Not Just Another Body Part

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Frank Talk About Breasts and Breast Cancer

Where breast cancer is concerned, every woman’s viewpoint is unique.

And in each individual patient, we’ll never know what that viewpoint is until we ask.

Last week’s blog highlighted the importance of discussing sexual function within the context of breast cancer treatment, not only when a patient expresses concern. A brief recap: 60% of women hope you’ll introduce the topic of sexuality, but the talk takes place just 23% of the time.

Today, we’ll explore sexuality and breast cancer beyond the clinically sterile word, function. Because, as you well know, if you live in the Western world in the 21st century, breasts are not just functional body parts that happen to be a cancer site. Complex doesn’t even begin to describe the role they play in terms of a woman’s sexuality, sexual self-image, and sexual relationships.

Sexuality potentially suffers from many aspects of breast cancer treatment, and that may arise from pain, hormonal changes, relationship upheaval, and a realigning of life priorities following an unexpected and frightening major life event.

When discussing sexuality is taboo, as it all-too-often is, none of these issues come to the fore.

And neither do breasts. Specifically, what they mean to a woman facing tough decisions about treatment alternatives, reconstruction options, and behind-closed-doors scenes that will play out when she’s standing alone before the mirror or sharing an intimate moment with a sexual partner.

In speaking with several survivors, dabbling in the sparse literature on the topic, and eavesdropping on virtual conversations online, I am reminded that today’s women of all ages face complex pressures (cancer-imposed, self-imposed, partner-imposed, and society-imposed) when making cancer-related decisions about their breasts.

Can a woman be a card-carrying feminist and still yearn for a restoration of the beauty as well as the sexual function of her breasts, or the "fetishized sexual objects that men have turned them into" – as one blog poster put it?

Listen to one survivor posting on a British online bulletin board for women, as she asks that very question:

I am and have always been a feminist, raised in a feminist household, raising my [daughter] in a feminist household. Part of my feminist beliefs have always included a firm stance that we as women are more than our biology, are more than our physicality and are more than the way we look. Ergo I have always thought I would shun breast augmentation – presenting oneself as "well-groomed" to the patriarchal world being one thing, cosmetic surgery designed to hyper-sexualise my being another entirely. (note, I judge not those who chose these things, just have always believed they aren’t for me). I now find myself having to think about what I to do in the event of double mastectomy. It seems I am somewhat more attached to my breasts than I thought I was! It seems that my feminine persona is more wrapped up with them than I realized – and I somehow can’t help feeling like I would be less of a woman, or maybe just less of me without them, and its making me really sad trying to imagine dressing differently, having sex differently, etc. And think that I want the reconstruction. But then the "head" part of me thinks that I’m falling into the trap of defining myself by the way I look, all of the things that I’ve spent my life arguing against. Which quite frankly is making my head explode with confusion. Not sure if its even relevant but I have medium-large breasts, I don’t dress to emphasise them, but neither will I apologise for them or dress to hide them – they are there and they are part of me, and if a man thinks that I should hide them away in case he’s tempted to stare at them then that’s his issue not mine. So, what would you do, then? Is this a feminist issue? Am I betraying my principles? It’s not really any better than a boob-job, is it? Or am I just getting myself twisted up over nothing at all?

Answers poured in to the confused poster on the Mumsnet site, with most respondents warmly reassuring "TheBossofMe" that reconstruction was not incompatible with feminist ideology, and that she should do whatever she could to help herself heal.

One poster, for example, responded:

My mother had a single and no reconstruction – I don’t think it was that available then and she always had issues with it – it’s much harder to cope with one in terms of dressing etc. She used to cry when she saw her special bras hanging on the line. Please don’t worry about the decision from a feminist/non-feminist pov – it’s all about how you feel and what will make you feel whole and come to terms with the whole thing.

 

 

Others admitted their bias leaning in the other direction, noting complications and mixed results of reconstruction surgery, or mentioning fashion alternatives – "flowing tops or layered tops on top of one another ... interesting scarves and fashionable shawls" that de-emphasize the shape of breasts for women who require mastectomy but choose not to have reconstruction or to use prostheses.

Wanting to further explore the issue of breasts, sexuality, and breast cancer, I spoke with a beautiful young cancer survivor who expressed her tremendous gratitude to an ob.gyn. who openly and in a matter-of-fact way discussed her breasts, sexual relationship, and yes, sexual function in a way her oncologists never had, since she had felt caught unprepared for the catastrophic hit that her sexual relationship, as well as her body, had taken during her cancer battle.

I spoke to another survivor – this one middle-aged – who was stunned into silence when a physician casually noted that she needn’t worry about ever replacing the breast implants she would receive during reconstruction, as is periodically necessary. When that day came she would be in her 70s, he mused, and the implants would simply be removed, since she "wouldn’t be needing" her breasts anymore.

It was against this backdrop that I read the study "Pink Ribbon Pin-Ups: photographing femininity after breast cancer" in the journal Culture, Health & Sexuality (2012;14:753-66).

Author Kaitlyn Regehr described her controversial project, which raised money for the Canadian Breast Cancer Foundation, as a reaction to gallery portraits and coffee table books depicting "haunting" visages of women’s scarred, postmastectomy chests, bald heads, and gauntly disfigured bodies.

A self-described "burlesque expert and television personality," Ms. Regehr recalls her encounter with a breast cancer survivor who had been asked to participate in a "rather provocative photo shoot in which she would be photographed without her wig."

The woman, she said, mentioned feeling like a "victim on display," leading Ms. Regehr to contemplate that "voyeurs of ... cancer" objectify women in a manner no less objectionable than the male-centered cheesecake photography and pin-up photography popularized from 1915 through World War II.

Today’s version of pin-up art is created according to the healthy whims and fantasies of women themselves "for the purposes of personal empowerment and sexual exploration," according to Ms. Regehr.

She invited survivors to apply to be calendar models and set about creating the first in a series of "Pink Ribbon Pin-Ups" in which women would choose how they would be seen, sexually, post-cancer.

Among the first 14 participants, none chose to highlight the scars of their cancer by posing without a wig or prosthetic breasts. Some said frankly that that they had decided to participate as a gift to a significant other, or as a means of reclaiming sexual self-confidence. One young woman described her marriage post-cancer as "predominantly nonsexual" and said she wanted to give her husband the pin-up photo for Christmas. Another survivor, dying of her cancer, was thrilled by the idea that she would be "Miss March" – her husband’s birthday month.

Were the images self-objectifying, or "subscribing to the feminine ideal as defined by the male gaze"? Ms. Regehr asks.

Later in the article she provides her own answer, drawn from the definition of individualized sexual empowerment: "Each woman has the right, and should have the opportunities, to explore and express her post-cancer body."

I’ve encountered women whose empowerment came from saying "no" to any further medical or surgical treatment than was necessary to control their breast cancer. Women whose feminine sense of self never centered on their breasts and who were happy to leave the world of bras behind. Women who were delighted or disappointed by their breast reconstruction or by the appearance of their breast conservation surgery.

In other words, it’s complicated.

And we’ll never understand how it is for a particular woman until we frankly discuss breasts in the context of breast cancer – not just how they appear, clothed or unclothed, but what meaning they hold for her sexuality and sense of self.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist. Visit the Views section at www.oncologyreport.com to see what is new in Vitality Signs.

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Frank Talk About Breasts and Breast Cancer
Frank Talk About Breasts and Breast Cancer

Where breast cancer is concerned, every woman’s viewpoint is unique.

And in each individual patient, we’ll never know what that viewpoint is until we ask.

Last week’s blog highlighted the importance of discussing sexual function within the context of breast cancer treatment, not only when a patient expresses concern. A brief recap: 60% of women hope you’ll introduce the topic of sexuality, but the talk takes place just 23% of the time.

Today, we’ll explore sexuality and breast cancer beyond the clinically sterile word, function. Because, as you well know, if you live in the Western world in the 21st century, breasts are not just functional body parts that happen to be a cancer site. Complex doesn’t even begin to describe the role they play in terms of a woman’s sexuality, sexual self-image, and sexual relationships.

Sexuality potentially suffers from many aspects of breast cancer treatment, and that may arise from pain, hormonal changes, relationship upheaval, and a realigning of life priorities following an unexpected and frightening major life event.

When discussing sexuality is taboo, as it all-too-often is, none of these issues come to the fore.

And neither do breasts. Specifically, what they mean to a woman facing tough decisions about treatment alternatives, reconstruction options, and behind-closed-doors scenes that will play out when she’s standing alone before the mirror or sharing an intimate moment with a sexual partner.

In speaking with several survivors, dabbling in the sparse literature on the topic, and eavesdropping on virtual conversations online, I am reminded that today’s women of all ages face complex pressures (cancer-imposed, self-imposed, partner-imposed, and society-imposed) when making cancer-related decisions about their breasts.

Can a woman be a card-carrying feminist and still yearn for a restoration of the beauty as well as the sexual function of her breasts, or the "fetishized sexual objects that men have turned them into" – as one blog poster put it?

Listen to one survivor posting on a British online bulletin board for women, as she asks that very question:

I am and have always been a feminist, raised in a feminist household, raising my [daughter] in a feminist household. Part of my feminist beliefs have always included a firm stance that we as women are more than our biology, are more than our physicality and are more than the way we look. Ergo I have always thought I would shun breast augmentation – presenting oneself as "well-groomed" to the patriarchal world being one thing, cosmetic surgery designed to hyper-sexualise my being another entirely. (note, I judge not those who chose these things, just have always believed they aren’t for me). I now find myself having to think about what I to do in the event of double mastectomy. It seems I am somewhat more attached to my breasts than I thought I was! It seems that my feminine persona is more wrapped up with them than I realized – and I somehow can’t help feeling like I would be less of a woman, or maybe just less of me without them, and its making me really sad trying to imagine dressing differently, having sex differently, etc. And think that I want the reconstruction. But then the "head" part of me thinks that I’m falling into the trap of defining myself by the way I look, all of the things that I’ve spent my life arguing against. Which quite frankly is making my head explode with confusion. Not sure if its even relevant but I have medium-large breasts, I don’t dress to emphasise them, but neither will I apologise for them or dress to hide them – they are there and they are part of me, and if a man thinks that I should hide them away in case he’s tempted to stare at them then that’s his issue not mine. So, what would you do, then? Is this a feminist issue? Am I betraying my principles? It’s not really any better than a boob-job, is it? Or am I just getting myself twisted up over nothing at all?

Answers poured in to the confused poster on the Mumsnet site, with most respondents warmly reassuring "TheBossofMe" that reconstruction was not incompatible with feminist ideology, and that she should do whatever she could to help herself heal.

One poster, for example, responded:

My mother had a single and no reconstruction – I don’t think it was that available then and she always had issues with it – it’s much harder to cope with one in terms of dressing etc. She used to cry when she saw her special bras hanging on the line. Please don’t worry about the decision from a feminist/non-feminist pov – it’s all about how you feel and what will make you feel whole and come to terms with the whole thing.

 

 

Others admitted their bias leaning in the other direction, noting complications and mixed results of reconstruction surgery, or mentioning fashion alternatives – "flowing tops or layered tops on top of one another ... interesting scarves and fashionable shawls" that de-emphasize the shape of breasts for women who require mastectomy but choose not to have reconstruction or to use prostheses.

Wanting to further explore the issue of breasts, sexuality, and breast cancer, I spoke with a beautiful young cancer survivor who expressed her tremendous gratitude to an ob.gyn. who openly and in a matter-of-fact way discussed her breasts, sexual relationship, and yes, sexual function in a way her oncologists never had, since she had felt caught unprepared for the catastrophic hit that her sexual relationship, as well as her body, had taken during her cancer battle.

I spoke to another survivor – this one middle-aged – who was stunned into silence when a physician casually noted that she needn’t worry about ever replacing the breast implants she would receive during reconstruction, as is periodically necessary. When that day came she would be in her 70s, he mused, and the implants would simply be removed, since she "wouldn’t be needing" her breasts anymore.

It was against this backdrop that I read the study "Pink Ribbon Pin-Ups: photographing femininity after breast cancer" in the journal Culture, Health & Sexuality (2012;14:753-66).

Author Kaitlyn Regehr described her controversial project, which raised money for the Canadian Breast Cancer Foundation, as a reaction to gallery portraits and coffee table books depicting "haunting" visages of women’s scarred, postmastectomy chests, bald heads, and gauntly disfigured bodies.

A self-described "burlesque expert and television personality," Ms. Regehr recalls her encounter with a breast cancer survivor who had been asked to participate in a "rather provocative photo shoot in which she would be photographed without her wig."

The woman, she said, mentioned feeling like a "victim on display," leading Ms. Regehr to contemplate that "voyeurs of ... cancer" objectify women in a manner no less objectionable than the male-centered cheesecake photography and pin-up photography popularized from 1915 through World War II.

Today’s version of pin-up art is created according to the healthy whims and fantasies of women themselves "for the purposes of personal empowerment and sexual exploration," according to Ms. Regehr.

She invited survivors to apply to be calendar models and set about creating the first in a series of "Pink Ribbon Pin-Ups" in which women would choose how they would be seen, sexually, post-cancer.

Among the first 14 participants, none chose to highlight the scars of their cancer by posing without a wig or prosthetic breasts. Some said frankly that that they had decided to participate as a gift to a significant other, or as a means of reclaiming sexual self-confidence. One young woman described her marriage post-cancer as "predominantly nonsexual" and said she wanted to give her husband the pin-up photo for Christmas. Another survivor, dying of her cancer, was thrilled by the idea that she would be "Miss March" – her husband’s birthday month.

Were the images self-objectifying, or "subscribing to the feminine ideal as defined by the male gaze"? Ms. Regehr asks.

Later in the article she provides her own answer, drawn from the definition of individualized sexual empowerment: "Each woman has the right, and should have the opportunities, to explore and express her post-cancer body."

I’ve encountered women whose empowerment came from saying "no" to any further medical or surgical treatment than was necessary to control their breast cancer. Women whose feminine sense of self never centered on their breasts and who were happy to leave the world of bras behind. Women who were delighted or disappointed by their breast reconstruction or by the appearance of their breast conservation surgery.

In other words, it’s complicated.

And we’ll never understand how it is for a particular woman until we frankly discuss breasts in the context of breast cancer – not just how they appear, clothed or unclothed, but what meaning they hold for her sexuality and sense of self.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist. Visit the Views section at www.oncologyreport.com to see what is new in Vitality Signs.

Where breast cancer is concerned, every woman’s viewpoint is unique.

And in each individual patient, we’ll never know what that viewpoint is until we ask.

Last week’s blog highlighted the importance of discussing sexual function within the context of breast cancer treatment, not only when a patient expresses concern. A brief recap: 60% of women hope you’ll introduce the topic of sexuality, but the talk takes place just 23% of the time.

Today, we’ll explore sexuality and breast cancer beyond the clinically sterile word, function. Because, as you well know, if you live in the Western world in the 21st century, breasts are not just functional body parts that happen to be a cancer site. Complex doesn’t even begin to describe the role they play in terms of a woman’s sexuality, sexual self-image, and sexual relationships.

Sexuality potentially suffers from many aspects of breast cancer treatment, and that may arise from pain, hormonal changes, relationship upheaval, and a realigning of life priorities following an unexpected and frightening major life event.

When discussing sexuality is taboo, as it all-too-often is, none of these issues come to the fore.

And neither do breasts. Specifically, what they mean to a woman facing tough decisions about treatment alternatives, reconstruction options, and behind-closed-doors scenes that will play out when she’s standing alone before the mirror or sharing an intimate moment with a sexual partner.

In speaking with several survivors, dabbling in the sparse literature on the topic, and eavesdropping on virtual conversations online, I am reminded that today’s women of all ages face complex pressures (cancer-imposed, self-imposed, partner-imposed, and society-imposed) when making cancer-related decisions about their breasts.

Can a woman be a card-carrying feminist and still yearn for a restoration of the beauty as well as the sexual function of her breasts, or the "fetishized sexual objects that men have turned them into" – as one blog poster put it?

Listen to one survivor posting on a British online bulletin board for women, as she asks that very question:

I am and have always been a feminist, raised in a feminist household, raising my [daughter] in a feminist household. Part of my feminist beliefs have always included a firm stance that we as women are more than our biology, are more than our physicality and are more than the way we look. Ergo I have always thought I would shun breast augmentation – presenting oneself as "well-groomed" to the patriarchal world being one thing, cosmetic surgery designed to hyper-sexualise my being another entirely. (note, I judge not those who chose these things, just have always believed they aren’t for me). I now find myself having to think about what I to do in the event of double mastectomy. It seems I am somewhat more attached to my breasts than I thought I was! It seems that my feminine persona is more wrapped up with them than I realized – and I somehow can’t help feeling like I would be less of a woman, or maybe just less of me without them, and its making me really sad trying to imagine dressing differently, having sex differently, etc. And think that I want the reconstruction. But then the "head" part of me thinks that I’m falling into the trap of defining myself by the way I look, all of the things that I’ve spent my life arguing against. Which quite frankly is making my head explode with confusion. Not sure if its even relevant but I have medium-large breasts, I don’t dress to emphasise them, but neither will I apologise for them or dress to hide them – they are there and they are part of me, and if a man thinks that I should hide them away in case he’s tempted to stare at them then that’s his issue not mine. So, what would you do, then? Is this a feminist issue? Am I betraying my principles? It’s not really any better than a boob-job, is it? Or am I just getting myself twisted up over nothing at all?

Answers poured in to the confused poster on the Mumsnet site, with most respondents warmly reassuring "TheBossofMe" that reconstruction was not incompatible with feminist ideology, and that she should do whatever she could to help herself heal.

One poster, for example, responded:

My mother had a single and no reconstruction – I don’t think it was that available then and she always had issues with it – it’s much harder to cope with one in terms of dressing etc. She used to cry when she saw her special bras hanging on the line. Please don’t worry about the decision from a feminist/non-feminist pov – it’s all about how you feel and what will make you feel whole and come to terms with the whole thing.

 

 

Others admitted their bias leaning in the other direction, noting complications and mixed results of reconstruction surgery, or mentioning fashion alternatives – "flowing tops or layered tops on top of one another ... interesting scarves and fashionable shawls" that de-emphasize the shape of breasts for women who require mastectomy but choose not to have reconstruction or to use prostheses.

Wanting to further explore the issue of breasts, sexuality, and breast cancer, I spoke with a beautiful young cancer survivor who expressed her tremendous gratitude to an ob.gyn. who openly and in a matter-of-fact way discussed her breasts, sexual relationship, and yes, sexual function in a way her oncologists never had, since she had felt caught unprepared for the catastrophic hit that her sexual relationship, as well as her body, had taken during her cancer battle.

I spoke to another survivor – this one middle-aged – who was stunned into silence when a physician casually noted that she needn’t worry about ever replacing the breast implants she would receive during reconstruction, as is periodically necessary. When that day came she would be in her 70s, he mused, and the implants would simply be removed, since she "wouldn’t be needing" her breasts anymore.

It was against this backdrop that I read the study "Pink Ribbon Pin-Ups: photographing femininity after breast cancer" in the journal Culture, Health & Sexuality (2012;14:753-66).

Author Kaitlyn Regehr described her controversial project, which raised money for the Canadian Breast Cancer Foundation, as a reaction to gallery portraits and coffee table books depicting "haunting" visages of women’s scarred, postmastectomy chests, bald heads, and gauntly disfigured bodies.

A self-described "burlesque expert and television personality," Ms. Regehr recalls her encounter with a breast cancer survivor who had been asked to participate in a "rather provocative photo shoot in which she would be photographed without her wig."

The woman, she said, mentioned feeling like a "victim on display," leading Ms. Regehr to contemplate that "voyeurs of ... cancer" objectify women in a manner no less objectionable than the male-centered cheesecake photography and pin-up photography popularized from 1915 through World War II.

Today’s version of pin-up art is created according to the healthy whims and fantasies of women themselves "for the purposes of personal empowerment and sexual exploration," according to Ms. Regehr.

She invited survivors to apply to be calendar models and set about creating the first in a series of "Pink Ribbon Pin-Ups" in which women would choose how they would be seen, sexually, post-cancer.

Among the first 14 participants, none chose to highlight the scars of their cancer by posing without a wig or prosthetic breasts. Some said frankly that that they had decided to participate as a gift to a significant other, or as a means of reclaiming sexual self-confidence. One young woman described her marriage post-cancer as "predominantly nonsexual" and said she wanted to give her husband the pin-up photo for Christmas. Another survivor, dying of her cancer, was thrilled by the idea that she would be "Miss March" – her husband’s birthday month.

Were the images self-objectifying, or "subscribing to the feminine ideal as defined by the male gaze"? Ms. Regehr asks.

Later in the article she provides her own answer, drawn from the definition of individualized sexual empowerment: "Each woman has the right, and should have the opportunities, to explore and express her post-cancer body."

I’ve encountered women whose empowerment came from saying "no" to any further medical or surgical treatment than was necessary to control their breast cancer. Women whose feminine sense of self never centered on their breasts and who were happy to leave the world of bras behind. Women who were delighted or disappointed by their breast reconstruction or by the appearance of their breast conservation surgery.

In other words, it’s complicated.

And we’ll never understand how it is for a particular woman until we frankly discuss breasts in the context of breast cancer – not just how they appear, clothed or unclothed, but what meaning they hold for her sexuality and sense of self.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist. Visit the Views section at www.oncologyreport.com to see what is new in Vitality Signs.

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The Cure Is Here, Once Again: Walking the Tightrope Between Hype and Hope

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The Cure Is Here, Once Again: Walking the Tightrope Between Hype and Hope

Recent headlines heralding recent findings of four main breast cancer genetic subtypes brought back bittersweet memories for Sharon Batt, of Halifax, Nova Scotia, who was interviewed by Canada’s CBC News.

When she was first diagnosed with breast cancer 24 years ago, she was one of those to hang her hopes on every promising headline.

"I clipped these stories out and hung on to them, reread them, looking for some clues that something sudden and dramatic was going to happen that would change the reality that my physicians were trying to present me with," she recalled in the interview.

No miracle cure has kept Ms. Batt alive, but alive she is, counseling others to read headlines with a realistic sense of what’s available today.

The CBC story went on to quote oncology experts who put the findings into perspective as yes, they were scientifically meaningful – but important only within the context of science’s timetable and not the breakneck bench-to-bedside pace envisioned by patients.

To be sure, findings published online by Nature on Sept. 23 were "electrifying," as the respected New York Times science writer, Gina Kolata, put it, because being able to categorize breast cancer into genetic subtypes holds the potential for tailoring treatment and streamlining research.

But even the Times, with its conservative headline, "Study Divides Breast Cancer into Four Genetic Types," ran a poignant picture of Elizabeth Stark, Ph.D., a breast cancer patient of one of the study researchers, hugging her small daughter, which clearly implied that the discovery plus quick action in the clinic could mean all the difference to Dr. Stark.

In contrast to that message was the ultra-clear comment from Karuna Jaggar, executive director of the advocacy group, Breast Cancer Action: "‘There are a lot of steps that turn basic science into clinically meaningful results, ... It is the ‘stay tuned’ story.’ "

Dr. Stark is a 48-year-old Pfizer biochemist with the basal-type breast cancer that under the new classification system is considered genetically more similar to ovarian cancer than to the other forms of breast cancer, and aggressive. After three rounds of chemotherapy, surgery, and radiation in 4 years, her disease is described as "stable," Ms. Kolata wrote, and she knows "it will take time for the explosion of genetic data to produce new treatments that might help her."

But Dr. Stark has the last word: " ‘In 10 years it will be different,’ she said, adding emphatically, ‘I know I will be here in 10 years.’ "

Other news outlets danced a similar two-step in covering the Nature study, juggling optimistic, but science-based reporting with the "human angle," as editors always demand. (I know of what I speak, having covered science and medicine for general news organizations and independent newspapers for physicians for more than 25 years.)

Here is a sampling of the headlines your patients may have read:

• Breast Cancer Breakthrough to Bring Better Treatments (Fox News)

• Gene Clues Offer New Hope for Treating Breast Cancer (MSNBC)

• Breakthrough in Search for Breast Cancer Cure (New York Post)

• Breaking the Breast Cancer Code (Baltimore Sun)

• Scientists Parse Genes of Breast Cancer’s Four Major Types (NPR)

• Breast Cancer Genetics: Study Dubbed ‘Giant Step’ (CBS News

• Genetics to Determine Cancer Treatments (Los Angeles Times)

The Denver Post, which republished Ms. Kolata’s study, tagged it with a new headline: "Breast cancer research: New genetic study reveals ‘road map’ for a possible cure."

In the clinic, you’re sure to be asked which genetic categories typify your patients’ breast cancer, and how soon that knowledge will lead to cures. Once again, you’ll have to don your scientist’s hat, explain the findings, explain the implications, and explain that science, unlike headline writing, can be a painstakingly complex process that puts a premium on getting it right in the end.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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Recent headlines heralding recent findings of four main breast cancer genetic subtypes brought back bittersweet memories for Sharon Batt, of Halifax, Nova Scotia, who was interviewed by Canada’s CBC News.

When she was first diagnosed with breast cancer 24 years ago, she was one of those to hang her hopes on every promising headline.

"I clipped these stories out and hung on to them, reread them, looking for some clues that something sudden and dramatic was going to happen that would change the reality that my physicians were trying to present me with," she recalled in the interview.

No miracle cure has kept Ms. Batt alive, but alive she is, counseling others to read headlines with a realistic sense of what’s available today.

The CBC story went on to quote oncology experts who put the findings into perspective as yes, they were scientifically meaningful – but important only within the context of science’s timetable and not the breakneck bench-to-bedside pace envisioned by patients.

To be sure, findings published online by Nature on Sept. 23 were "electrifying," as the respected New York Times science writer, Gina Kolata, put it, because being able to categorize breast cancer into genetic subtypes holds the potential for tailoring treatment and streamlining research.

But even the Times, with its conservative headline, "Study Divides Breast Cancer into Four Genetic Types," ran a poignant picture of Elizabeth Stark, Ph.D., a breast cancer patient of one of the study researchers, hugging her small daughter, which clearly implied that the discovery plus quick action in the clinic could mean all the difference to Dr. Stark.

In contrast to that message was the ultra-clear comment from Karuna Jaggar, executive director of the advocacy group, Breast Cancer Action: "‘There are a lot of steps that turn basic science into clinically meaningful results, ... It is the ‘stay tuned’ story.’ "

Dr. Stark is a 48-year-old Pfizer biochemist with the basal-type breast cancer that under the new classification system is considered genetically more similar to ovarian cancer than to the other forms of breast cancer, and aggressive. After three rounds of chemotherapy, surgery, and radiation in 4 years, her disease is described as "stable," Ms. Kolata wrote, and she knows "it will take time for the explosion of genetic data to produce new treatments that might help her."

But Dr. Stark has the last word: " ‘In 10 years it will be different,’ she said, adding emphatically, ‘I know I will be here in 10 years.’ "

Other news outlets danced a similar two-step in covering the Nature study, juggling optimistic, but science-based reporting with the "human angle," as editors always demand. (I know of what I speak, having covered science and medicine for general news organizations and independent newspapers for physicians for more than 25 years.)

Here is a sampling of the headlines your patients may have read:

• Breast Cancer Breakthrough to Bring Better Treatments (Fox News)

• Gene Clues Offer New Hope for Treating Breast Cancer (MSNBC)

• Breakthrough in Search for Breast Cancer Cure (New York Post)

• Breaking the Breast Cancer Code (Baltimore Sun)

• Scientists Parse Genes of Breast Cancer’s Four Major Types (NPR)

• Breast Cancer Genetics: Study Dubbed ‘Giant Step’ (CBS News

• Genetics to Determine Cancer Treatments (Los Angeles Times)

The Denver Post, which republished Ms. Kolata’s study, tagged it with a new headline: "Breast cancer research: New genetic study reveals ‘road map’ for a possible cure."

In the clinic, you’re sure to be asked which genetic categories typify your patients’ breast cancer, and how soon that knowledge will lead to cures. Once again, you’ll have to don your scientist’s hat, explain the findings, explain the implications, and explain that science, unlike headline writing, can be a painstakingly complex process that puts a premium on getting it right in the end.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

Recent headlines heralding recent findings of four main breast cancer genetic subtypes brought back bittersweet memories for Sharon Batt, of Halifax, Nova Scotia, who was interviewed by Canada’s CBC News.

When she was first diagnosed with breast cancer 24 years ago, she was one of those to hang her hopes on every promising headline.

"I clipped these stories out and hung on to them, reread them, looking for some clues that something sudden and dramatic was going to happen that would change the reality that my physicians were trying to present me with," she recalled in the interview.

No miracle cure has kept Ms. Batt alive, but alive she is, counseling others to read headlines with a realistic sense of what’s available today.

The CBC story went on to quote oncology experts who put the findings into perspective as yes, they were scientifically meaningful – but important only within the context of science’s timetable and not the breakneck bench-to-bedside pace envisioned by patients.

To be sure, findings published online by Nature on Sept. 23 were "electrifying," as the respected New York Times science writer, Gina Kolata, put it, because being able to categorize breast cancer into genetic subtypes holds the potential for tailoring treatment and streamlining research.

But even the Times, with its conservative headline, "Study Divides Breast Cancer into Four Genetic Types," ran a poignant picture of Elizabeth Stark, Ph.D., a breast cancer patient of one of the study researchers, hugging her small daughter, which clearly implied that the discovery plus quick action in the clinic could mean all the difference to Dr. Stark.

In contrast to that message was the ultra-clear comment from Karuna Jaggar, executive director of the advocacy group, Breast Cancer Action: "‘There are a lot of steps that turn basic science into clinically meaningful results, ... It is the ‘stay tuned’ story.’ "

Dr. Stark is a 48-year-old Pfizer biochemist with the basal-type breast cancer that under the new classification system is considered genetically more similar to ovarian cancer than to the other forms of breast cancer, and aggressive. After three rounds of chemotherapy, surgery, and radiation in 4 years, her disease is described as "stable," Ms. Kolata wrote, and she knows "it will take time for the explosion of genetic data to produce new treatments that might help her."

But Dr. Stark has the last word: " ‘In 10 years it will be different,’ she said, adding emphatically, ‘I know I will be here in 10 years.’ "

Other news outlets danced a similar two-step in covering the Nature study, juggling optimistic, but science-based reporting with the "human angle," as editors always demand. (I know of what I speak, having covered science and medicine for general news organizations and independent newspapers for physicians for more than 25 years.)

Here is a sampling of the headlines your patients may have read:

• Breast Cancer Breakthrough to Bring Better Treatments (Fox News)

• Gene Clues Offer New Hope for Treating Breast Cancer (MSNBC)

• Breakthrough in Search for Breast Cancer Cure (New York Post)

• Breaking the Breast Cancer Code (Baltimore Sun)

• Scientists Parse Genes of Breast Cancer’s Four Major Types (NPR)

• Breast Cancer Genetics: Study Dubbed ‘Giant Step’ (CBS News

• Genetics to Determine Cancer Treatments (Los Angeles Times)

The Denver Post, which republished Ms. Kolata’s study, tagged it with a new headline: "Breast cancer research: New genetic study reveals ‘road map’ for a possible cure."

In the clinic, you’re sure to be asked which genetic categories typify your patients’ breast cancer, and how soon that knowledge will lead to cures. Once again, you’ll have to don your scientist’s hat, explain the findings, explain the implications, and explain that science, unlike headline writing, can be a painstakingly complex process that puts a premium on getting it right in the end.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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Grief -- The Long and the Short of It

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Should you refer surviving family members for therapy? Probably not.

The scientific debunking of false beliefs is as relevant today as it was when skeptics took a good look at bloodletting, alchemy, and the balancing of the four humors in the pursuit of good health.

In 1986, after all, Dr. Barry Marshall’s hypothesis that Helicobacter pylori, and not stress, might cause peptic ulcers was deemed "rubbish" – but science prevailed. In 2005, he and his colleague Robin Warren shared the Nobel Prize.

The social sciences, too, depend on science to sort out presumptions from facts.

A prime example was the DARE (Drug Abuse Resistance Education) program widely implemented in schools beginning in the early 1980s. To many, it made sense that police-led drug education and character promotion activities would help vulnerable children "Just Say No" to drugs. But when the program was subjected to well-designed trials, it was determined to be ineffective in preventing drug use and found to have, in some populations, a "boomerang effect" that escalated drug use among children who had participated.

In psychology, as in medicine, the aim is to "do no harm."

That’s why I bring to your attention to a recent article (Curr. Opin. Psychiatry 2012;25:46-51) entitled "Recent trends in the treatment of prolonged grief."

If you think back to a time in your life when you experienced acute grief, you can imagine why it has been assumed that pretty much everyone could benefit from psychotherapy to get them through this profoundly emotional and sometimes physically debilitating experience. Extreme grief can leave people reeling, disoriented, sleepless, and dysregulated. It can make a previously emotionally stable person feel detached and numb or frighteningly out of control.

Now focus your memory on the weeks and months following your acute loss. Chances are that your sleep, appetite, concentration, and mood eventually returned to normal as your exquisitely intense grief reaction subsided into a quieter, more reflective form of longing and sadness.

It turns out, as Dr. Anthony D. Mancini and his associates note in their review, that 50%-60% of people "are resilient and cope remarkably well with loss and would obviously not require professional intervention."

Another 10%-20% come to grips with their grief more slowly, but eventually come to a state of homeostasis on their own timetable.

That leaves a subset of individuals whose symptoms escalate and then persist, perhaps even for years, compromising their function and well-being. People suffering this enduring, complicated grief remain an open and jagged emotional wound. They may become depressed, hopeless, bitter, detached, or wholly focused on their loss.

They need treatment, and benefit from it, just as the small percentage of people who fail to recover after a brush with life-threatening trauma fare better if they receive exposure-based therapy for posttraumatic stress disorder.

Recent meta-analyses of grief therapy for adults conclude that overall effect sizes are vanishingly small to nonexistent when therapy is universally applied.

"By far the most benefit was evidenced in indicated interventions that specifically targeted persons with high levels of distress," the authors wrote. "Curiously, however, even indicated interventions produced effect sizes that were markedly lower than typically found for psychotherapy."

Results were similar in children, although intervening early with grieving children improved efficacy.

So what’s the worst thing that could happen if people not at risk for complicated grief are referred for unnecessary therapy?

Doing harm, of course.

The possibility of introducing iatrogenic pathology is still unresolved, but Dr. Mancini and his associates noted that "grief treatments for unproblematic grief reactions" were included in a review of "potentially harmful" psychological interventions (Perspect. Psychol. Sci. 2007;2:53-70).

Soberingly, there’s a precedent. A specific intervention aimed at preventing PTSD, critical incident stress management, has been shown to interfere with natural recovery.

In a way, it all makes evolutionary sense.

Human life through the ages has been marked by horrific trauma and agonizing sorrow, just as it has been punctuated by moments of ecstatic joy.

Coping well would clearly be a selection-worthy trait in such a context.

The authors recommend that grief therapy be "reserved for children and adults with marked and persistent distress following a loss. The longstanding assumption that grief therapy is appropriate for all grievers is no longer tenable."

When grievers screened for high levels of distress receive exposure-based therapy and the opportunity to cognitively process emotional reactions, there is benefit, several recent studies show. Not surprisingly, antidepressant therapy targeted specifically to grievers suffering symptoms of depression seems to be appropriate as well, since it seems to facilitate participation in recovery.

Specific data are not available to guide in the selection of survivors most at risk for complicated grief, but I think judgment is key.

 

 

As a physician, you have seen (and experienced) much grief.

If you detect levels of distress disproportional to the norm, or worry specifically about survivors with pre-existing mental health conditions or a history of many traumas and losses, it would seem reasonable to pay attention and to follow up. Perhaps, like the majority of people coping with loss, they will draw on social supports and inner reserves and heal just fine.

If their distress is extreme and persistent, evidence suggests it would be wise to refer them for psychosocial help in moving on.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Should you refer surviving family members for therapy? Probably not.
Should you refer surviving family members for therapy? Probably not.

The scientific debunking of false beliefs is as relevant today as it was when skeptics took a good look at bloodletting, alchemy, and the balancing of the four humors in the pursuit of good health.

In 1986, after all, Dr. Barry Marshall’s hypothesis that Helicobacter pylori, and not stress, might cause peptic ulcers was deemed "rubbish" – but science prevailed. In 2005, he and his colleague Robin Warren shared the Nobel Prize.

The social sciences, too, depend on science to sort out presumptions from facts.

A prime example was the DARE (Drug Abuse Resistance Education) program widely implemented in schools beginning in the early 1980s. To many, it made sense that police-led drug education and character promotion activities would help vulnerable children "Just Say No" to drugs. But when the program was subjected to well-designed trials, it was determined to be ineffective in preventing drug use and found to have, in some populations, a "boomerang effect" that escalated drug use among children who had participated.

In psychology, as in medicine, the aim is to "do no harm."

That’s why I bring to your attention to a recent article (Curr. Opin. Psychiatry 2012;25:46-51) entitled "Recent trends in the treatment of prolonged grief."

If you think back to a time in your life when you experienced acute grief, you can imagine why it has been assumed that pretty much everyone could benefit from psychotherapy to get them through this profoundly emotional and sometimes physically debilitating experience. Extreme grief can leave people reeling, disoriented, sleepless, and dysregulated. It can make a previously emotionally stable person feel detached and numb or frighteningly out of control.

Now focus your memory on the weeks and months following your acute loss. Chances are that your sleep, appetite, concentration, and mood eventually returned to normal as your exquisitely intense grief reaction subsided into a quieter, more reflective form of longing and sadness.

It turns out, as Dr. Anthony D. Mancini and his associates note in their review, that 50%-60% of people "are resilient and cope remarkably well with loss and would obviously not require professional intervention."

Another 10%-20% come to grips with their grief more slowly, but eventually come to a state of homeostasis on their own timetable.

That leaves a subset of individuals whose symptoms escalate and then persist, perhaps even for years, compromising their function and well-being. People suffering this enduring, complicated grief remain an open and jagged emotional wound. They may become depressed, hopeless, bitter, detached, or wholly focused on their loss.

They need treatment, and benefit from it, just as the small percentage of people who fail to recover after a brush with life-threatening trauma fare better if they receive exposure-based therapy for posttraumatic stress disorder.

Recent meta-analyses of grief therapy for adults conclude that overall effect sizes are vanishingly small to nonexistent when therapy is universally applied.

"By far the most benefit was evidenced in indicated interventions that specifically targeted persons with high levels of distress," the authors wrote. "Curiously, however, even indicated interventions produced effect sizes that were markedly lower than typically found for psychotherapy."

Results were similar in children, although intervening early with grieving children improved efficacy.

So what’s the worst thing that could happen if people not at risk for complicated grief are referred for unnecessary therapy?

Doing harm, of course.

The possibility of introducing iatrogenic pathology is still unresolved, but Dr. Mancini and his associates noted that "grief treatments for unproblematic grief reactions" were included in a review of "potentially harmful" psychological interventions (Perspect. Psychol. Sci. 2007;2:53-70).

Soberingly, there’s a precedent. A specific intervention aimed at preventing PTSD, critical incident stress management, has been shown to interfere with natural recovery.

In a way, it all makes evolutionary sense.

Human life through the ages has been marked by horrific trauma and agonizing sorrow, just as it has been punctuated by moments of ecstatic joy.

Coping well would clearly be a selection-worthy trait in such a context.

The authors recommend that grief therapy be "reserved for children and adults with marked and persistent distress following a loss. The longstanding assumption that grief therapy is appropriate for all grievers is no longer tenable."

When grievers screened for high levels of distress receive exposure-based therapy and the opportunity to cognitively process emotional reactions, there is benefit, several recent studies show. Not surprisingly, antidepressant therapy targeted specifically to grievers suffering symptoms of depression seems to be appropriate as well, since it seems to facilitate participation in recovery.

Specific data are not available to guide in the selection of survivors most at risk for complicated grief, but I think judgment is key.

 

 

As a physician, you have seen (and experienced) much grief.

If you detect levels of distress disproportional to the norm, or worry specifically about survivors with pre-existing mental health conditions or a history of many traumas and losses, it would seem reasonable to pay attention and to follow up. Perhaps, like the majority of people coping with loss, they will draw on social supports and inner reserves and heal just fine.

If their distress is extreme and persistent, evidence suggests it would be wise to refer them for psychosocial help in moving on.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

The scientific debunking of false beliefs is as relevant today as it was when skeptics took a good look at bloodletting, alchemy, and the balancing of the four humors in the pursuit of good health.

In 1986, after all, Dr. Barry Marshall’s hypothesis that Helicobacter pylori, and not stress, might cause peptic ulcers was deemed "rubbish" – but science prevailed. In 2005, he and his colleague Robin Warren shared the Nobel Prize.

The social sciences, too, depend on science to sort out presumptions from facts.

A prime example was the DARE (Drug Abuse Resistance Education) program widely implemented in schools beginning in the early 1980s. To many, it made sense that police-led drug education and character promotion activities would help vulnerable children "Just Say No" to drugs. But when the program was subjected to well-designed trials, it was determined to be ineffective in preventing drug use and found to have, in some populations, a "boomerang effect" that escalated drug use among children who had participated.

In psychology, as in medicine, the aim is to "do no harm."

That’s why I bring to your attention to a recent article (Curr. Opin. Psychiatry 2012;25:46-51) entitled "Recent trends in the treatment of prolonged grief."

If you think back to a time in your life when you experienced acute grief, you can imagine why it has been assumed that pretty much everyone could benefit from psychotherapy to get them through this profoundly emotional and sometimes physically debilitating experience. Extreme grief can leave people reeling, disoriented, sleepless, and dysregulated. It can make a previously emotionally stable person feel detached and numb or frighteningly out of control.

Now focus your memory on the weeks and months following your acute loss. Chances are that your sleep, appetite, concentration, and mood eventually returned to normal as your exquisitely intense grief reaction subsided into a quieter, more reflective form of longing and sadness.

It turns out, as Dr. Anthony D. Mancini and his associates note in their review, that 50%-60% of people "are resilient and cope remarkably well with loss and would obviously not require professional intervention."

Another 10%-20% come to grips with their grief more slowly, but eventually come to a state of homeostasis on their own timetable.

That leaves a subset of individuals whose symptoms escalate and then persist, perhaps even for years, compromising their function and well-being. People suffering this enduring, complicated grief remain an open and jagged emotional wound. They may become depressed, hopeless, bitter, detached, or wholly focused on their loss.

They need treatment, and benefit from it, just as the small percentage of people who fail to recover after a brush with life-threatening trauma fare better if they receive exposure-based therapy for posttraumatic stress disorder.

Recent meta-analyses of grief therapy for adults conclude that overall effect sizes are vanishingly small to nonexistent when therapy is universally applied.

"By far the most benefit was evidenced in indicated interventions that specifically targeted persons with high levels of distress," the authors wrote. "Curiously, however, even indicated interventions produced effect sizes that were markedly lower than typically found for psychotherapy."

Results were similar in children, although intervening early with grieving children improved efficacy.

So what’s the worst thing that could happen if people not at risk for complicated grief are referred for unnecessary therapy?

Doing harm, of course.

The possibility of introducing iatrogenic pathology is still unresolved, but Dr. Mancini and his associates noted that "grief treatments for unproblematic grief reactions" were included in a review of "potentially harmful" psychological interventions (Perspect. Psychol. Sci. 2007;2:53-70).

Soberingly, there’s a precedent. A specific intervention aimed at preventing PTSD, critical incident stress management, has been shown to interfere with natural recovery.

In a way, it all makes evolutionary sense.

Human life through the ages has been marked by horrific trauma and agonizing sorrow, just as it has been punctuated by moments of ecstatic joy.

Coping well would clearly be a selection-worthy trait in such a context.

The authors recommend that grief therapy be "reserved for children and adults with marked and persistent distress following a loss. The longstanding assumption that grief therapy is appropriate for all grievers is no longer tenable."

When grievers screened for high levels of distress receive exposure-based therapy and the opportunity to cognitively process emotional reactions, there is benefit, several recent studies show. Not surprisingly, antidepressant therapy targeted specifically to grievers suffering symptoms of depression seems to be appropriate as well, since it seems to facilitate participation in recovery.

Specific data are not available to guide in the selection of survivors most at risk for complicated grief, but I think judgment is key.

 

 

As a physician, you have seen (and experienced) much grief.

If you detect levels of distress disproportional to the norm, or worry specifically about survivors with pre-existing mental health conditions or a history of many traumas and losses, it would seem reasonable to pay attention and to follow up. Perhaps, like the majority of people coping with loss, they will draw on social supports and inner reserves and heal just fine.

If their distress is extreme and persistent, evidence suggests it would be wise to refer them for psychosocial help in moving on.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Is Anyone Listening?

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Let’s picture a couple you’re seeing in your oncology practice. Susan is 52; Mike’s 54. They’re well educated, employed, and making a comfortable income. They’ve been married a long while; in fact, they recently celebrated their 25th anniversary.

About a month ago, Sue underwent surgery for early-stage breast cancer.

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Social constraint may be a major problem for a patient's adjustment to cancer and for how the marriage will adapt to this major life challenge.    

They may seem to you to be doing okay as a couple, especially considering the physical and emotional adjustments they’ve had to make since the diagnosis, but if it were possible to order the equivalent of an fMRI or PET scan of your patient’s emotions, you would see that not all is well. In the report’s social-cognitive processing section, the diagnosis would be "Socially constrained."

What it means in a nutshell is that Sue doesn’t feel that she can openly share her thoughts or feelings about her cancer – or really, even about the more mundane events in her life – with Mike.

And that could be a major problem for her adjustment to cancer and for how the marriage will adapt to this major life challenge.

A recent study (J. Fam. Psychology 2012: 26:661-7) examined the concept of social constraints in 45 newly diagnosed breast cancer patients and their spouses or significant others, beginning about a month after surgery. They defined social constraints as "the extent to which the patient perceived that her spouse avoided, rebuffed, or appeared disinterested in the patient’s attempt to share or discuss her cancer-related concerns."

An example, taken from one questionnaire utilized in the study: "How often did your spouse change the subject when you tried to discuss your illness?"

The authors, led by Elizabeth C. Pasipanodya of the University of Delaware, emphasized that social constraints are in the eye of the beholder and don’t necessarily reflect "objective signs of negativity, disinterest, or withdrawal."

In other words, if Sue perceives that Mike doesn’t want to hear about her symptoms or concerns, she’ll respond in a socially constrained way, keeping those feelings to herself, regardless of how Mike truly feels.

Indeed, in the study, the authors found no correlation between patients’ and spouses’ perceptions of social constraint in their relationships, even though they were in agreement, on average, about the quality of their marriages.

Associations with social constraint were powerful.

While female partners shared the "best event of the day" with their spouses 86% of the time, high patient-reported social constraint made that positive conversation 71% less likely (P less than .001). Not surprisingly, perhaps, the effect lost significance when investigators controlled for patient-reported marital quality.

Patients’ self-reported "worst event of the day" was shared with spouses 78% of the time but was also significantly (P less than .001) less likely to be shared among patients with high levels of social constraint. This time, the significance held, even when controlling for patient-reported marital quality.

Finally, when a cancer-related event was the "worst event of the day," patients shared the experience with a spouse 71% of the time, but significantly less so in the context of social constraint (P less than .03). Marital quality mediated the significance.

Among patients, self-reported social constraint was significantly associated with daily negative affect and lower self-esteem, intimacy, and marital happiness.

Past research demonstrates an association between social constraints and negative emotional and health outcomes in bereavement and diabetes. Among amputees, social constraint predicts depressive symptoms and posttraumatic stress disorder. Among cancer patients in previous studies, it is linked with intrusive thoughts and depressive symptoms.

In the Delaware study, "the patient’s perceptions seem to matter more than what the partner says he is doing," the authors concluded.

"Given that the promotion of relationship enhancement is a predominant intervention approach for couples at the early stages of cancer, our results suggest that social constraints should also be considered as a possible target of intervention separate from improving overall marital quality," Ms. Pasipanodya and her associates said.

As an oncologist, you have much to consider as you meet with a couple a month after breast cancer surgery, and social constraint in the relationship may be better addressed by the mental health professionals associated with your practice.

But it would be helpful to keep an eye out for signs of constraint, to enable you to connect at-risk couples with help early on in their cancer experience.

When Susan describes her side effects and concerns, is Mike, by chance, averting his gaze?

 

 

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Let’s picture a couple you’re seeing in your oncology practice. Susan is 52; Mike’s 54. They’re well educated, employed, and making a comfortable income. They’ve been married a long while; in fact, they recently celebrated their 25th anniversary.

About a month ago, Sue underwent surgery for early-stage breast cancer.

Photo AbleStock.com
Social constraint may be a major problem for a patient's adjustment to cancer and for how the marriage will adapt to this major life challenge.    

They may seem to you to be doing okay as a couple, especially considering the physical and emotional adjustments they’ve had to make since the diagnosis, but if it were possible to order the equivalent of an fMRI or PET scan of your patient’s emotions, you would see that not all is well. In the report’s social-cognitive processing section, the diagnosis would be "Socially constrained."

What it means in a nutshell is that Sue doesn’t feel that she can openly share her thoughts or feelings about her cancer – or really, even about the more mundane events in her life – with Mike.

And that could be a major problem for her adjustment to cancer and for how the marriage will adapt to this major life challenge.

A recent study (J. Fam. Psychology 2012: 26:661-7) examined the concept of social constraints in 45 newly diagnosed breast cancer patients and their spouses or significant others, beginning about a month after surgery. They defined social constraints as "the extent to which the patient perceived that her spouse avoided, rebuffed, or appeared disinterested in the patient’s attempt to share or discuss her cancer-related concerns."

An example, taken from one questionnaire utilized in the study: "How often did your spouse change the subject when you tried to discuss your illness?"

The authors, led by Elizabeth C. Pasipanodya of the University of Delaware, emphasized that social constraints are in the eye of the beholder and don’t necessarily reflect "objective signs of negativity, disinterest, or withdrawal."

In other words, if Sue perceives that Mike doesn’t want to hear about her symptoms or concerns, she’ll respond in a socially constrained way, keeping those feelings to herself, regardless of how Mike truly feels.

Indeed, in the study, the authors found no correlation between patients’ and spouses’ perceptions of social constraint in their relationships, even though they were in agreement, on average, about the quality of their marriages.

Associations with social constraint were powerful.

While female partners shared the "best event of the day" with their spouses 86% of the time, high patient-reported social constraint made that positive conversation 71% less likely (P less than .001). Not surprisingly, perhaps, the effect lost significance when investigators controlled for patient-reported marital quality.

Patients’ self-reported "worst event of the day" was shared with spouses 78% of the time but was also significantly (P less than .001) less likely to be shared among patients with high levels of social constraint. This time, the significance held, even when controlling for patient-reported marital quality.

Finally, when a cancer-related event was the "worst event of the day," patients shared the experience with a spouse 71% of the time, but significantly less so in the context of social constraint (P less than .03). Marital quality mediated the significance.

Among patients, self-reported social constraint was significantly associated with daily negative affect and lower self-esteem, intimacy, and marital happiness.

Past research demonstrates an association between social constraints and negative emotional and health outcomes in bereavement and diabetes. Among amputees, social constraint predicts depressive symptoms and posttraumatic stress disorder. Among cancer patients in previous studies, it is linked with intrusive thoughts and depressive symptoms.

In the Delaware study, "the patient’s perceptions seem to matter more than what the partner says he is doing," the authors concluded.

"Given that the promotion of relationship enhancement is a predominant intervention approach for couples at the early stages of cancer, our results suggest that social constraints should also be considered as a possible target of intervention separate from improving overall marital quality," Ms. Pasipanodya and her associates said.

As an oncologist, you have much to consider as you meet with a couple a month after breast cancer surgery, and social constraint in the relationship may be better addressed by the mental health professionals associated with your practice.

But it would be helpful to keep an eye out for signs of constraint, to enable you to connect at-risk couples with help early on in their cancer experience.

When Susan describes her side effects and concerns, is Mike, by chance, averting his gaze?

 

 

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

Let’s picture a couple you’re seeing in your oncology practice. Susan is 52; Mike’s 54. They’re well educated, employed, and making a comfortable income. They’ve been married a long while; in fact, they recently celebrated their 25th anniversary.

About a month ago, Sue underwent surgery for early-stage breast cancer.

Photo AbleStock.com
Social constraint may be a major problem for a patient's adjustment to cancer and for how the marriage will adapt to this major life challenge.    

They may seem to you to be doing okay as a couple, especially considering the physical and emotional adjustments they’ve had to make since the diagnosis, but if it were possible to order the equivalent of an fMRI or PET scan of your patient’s emotions, you would see that not all is well. In the report’s social-cognitive processing section, the diagnosis would be "Socially constrained."

What it means in a nutshell is that Sue doesn’t feel that she can openly share her thoughts or feelings about her cancer – or really, even about the more mundane events in her life – with Mike.

And that could be a major problem for her adjustment to cancer and for how the marriage will adapt to this major life challenge.

A recent study (J. Fam. Psychology 2012: 26:661-7) examined the concept of social constraints in 45 newly diagnosed breast cancer patients and their spouses or significant others, beginning about a month after surgery. They defined social constraints as "the extent to which the patient perceived that her spouse avoided, rebuffed, or appeared disinterested in the patient’s attempt to share or discuss her cancer-related concerns."

An example, taken from one questionnaire utilized in the study: "How often did your spouse change the subject when you tried to discuss your illness?"

The authors, led by Elizabeth C. Pasipanodya of the University of Delaware, emphasized that social constraints are in the eye of the beholder and don’t necessarily reflect "objective signs of negativity, disinterest, or withdrawal."

In other words, if Sue perceives that Mike doesn’t want to hear about her symptoms or concerns, she’ll respond in a socially constrained way, keeping those feelings to herself, regardless of how Mike truly feels.

Indeed, in the study, the authors found no correlation between patients’ and spouses’ perceptions of social constraint in their relationships, even though they were in agreement, on average, about the quality of their marriages.

Associations with social constraint were powerful.

While female partners shared the "best event of the day" with their spouses 86% of the time, high patient-reported social constraint made that positive conversation 71% less likely (P less than .001). Not surprisingly, perhaps, the effect lost significance when investigators controlled for patient-reported marital quality.

Patients’ self-reported "worst event of the day" was shared with spouses 78% of the time but was also significantly (P less than .001) less likely to be shared among patients with high levels of social constraint. This time, the significance held, even when controlling for patient-reported marital quality.

Finally, when a cancer-related event was the "worst event of the day," patients shared the experience with a spouse 71% of the time, but significantly less so in the context of social constraint (P less than .03). Marital quality mediated the significance.

Among patients, self-reported social constraint was significantly associated with daily negative affect and lower self-esteem, intimacy, and marital happiness.

Past research demonstrates an association between social constraints and negative emotional and health outcomes in bereavement and diabetes. Among amputees, social constraint predicts depressive symptoms and posttraumatic stress disorder. Among cancer patients in previous studies, it is linked with intrusive thoughts and depressive symptoms.

In the Delaware study, "the patient’s perceptions seem to matter more than what the partner says he is doing," the authors concluded.

"Given that the promotion of relationship enhancement is a predominant intervention approach for couples at the early stages of cancer, our results suggest that social constraints should also be considered as a possible target of intervention separate from improving overall marital quality," Ms. Pasipanodya and her associates said.

As an oncologist, you have much to consider as you meet with a couple a month after breast cancer surgery, and social constraint in the relationship may be better addressed by the mental health professionals associated with your practice.

But it would be helpful to keep an eye out for signs of constraint, to enable you to connect at-risk couples with help early on in their cancer experience.

When Susan describes her side effects and concerns, is Mike, by chance, averting his gaze?

 

 

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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No Time to Waste

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Avoidant Coping Style Scrambles Circadian Rhythms in Breast Cancer Patients

Even in the earliest days following a diagnosis of breast cancer, maladaptive coping styles are associated with a disruption in circadian rhythms – which are proven in metastatic disease to be a prognostic indicator of mortality.

The surprising finding, reported in the journal Annals of Behavioral Medicine (2012;44:10-20), holds potentially profound implications for the timing and tailoring of psychological interventions in newly diagnosed patients.

"Given that circadian cycles regulate tumor growth, we need greater understanding of possible psychosocial effects in cancer-related circadian disruption," concluded the study’s authors, led by Dr. Eric Dedert of Duke University Medical Center and the Veterans Affairs Medical Center in Durham, N.C.

The fact that circadian disruption was significant in a subset of patients a mean 19 days after diagnosis suggests that there may be no time to waste in identifying and treating potentially maladaptive coping responses that could impact not only their adjustment, but also their prognosis.

The study followed 57 women (mean age, 52 years) scheduled for breast cancer surgery, 54 of whom had just received a primary diagnosis and 3 who were facing surgery for recurrent disease. Psychological coping was measured in these patients, along with salivary cortisol and rest/activity circadian rhythms for 4 days.

Those with intrusive thoughts related to their diagnosis and avoidant coping styles (denial, self-distraction, and behavioral disengagement) were statistically more likely to demonstrate uneven rest/activity circadian rhythms and daytime sedentariness.

"In this newly diagnosed sample, intrusion-related inactivity during the daytime might be an indication that patients were seeking emotional numbness by disengaging from their environments and remaining sedentary," the authors noted.

"As indicated in the avoidance literature, this disengagement has the paradoxical effect of increasing distress."

The study has limitations, of course: a small sample size, a cross-sectional design, and the possibility that patients inclined to enroll might represent a biased sample in terms of coping styles. Of note, however, was the authors’ anecdotal report that some who refused to participate appeared to be "feeling overwhelmed with diagnosis and surgery planning," suggesting that the study may have underestimated the early impact of coping style on circadian rhythms.

The authors offered a comprehensive overview of a growing literature documenting intriguing (and ominous) associations among circadian rhythm disruption and physical, emotional, and social functioning in cancer patients, as well as tumor progression and mortality.

It’s a complex web that obviously needs much more elaboration before cause-and-effect conclusions might be drawn, but for now, the findings in early breast cancer patients certainly warrant paying close attention to coping from Day 1.

The study was funded by the University of Louisville (Ky.) Intramural Research Incentive Grant for Research on Women. The investigators reported no conflicts of interest.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Avoidant Coping Style Scrambles Circadian Rhythms in Breast Cancer Patients
Avoidant Coping Style Scrambles Circadian Rhythms in Breast Cancer Patients

Even in the earliest days following a diagnosis of breast cancer, maladaptive coping styles are associated with a disruption in circadian rhythms – which are proven in metastatic disease to be a prognostic indicator of mortality.

The surprising finding, reported in the journal Annals of Behavioral Medicine (2012;44:10-20), holds potentially profound implications for the timing and tailoring of psychological interventions in newly diagnosed patients.

"Given that circadian cycles regulate tumor growth, we need greater understanding of possible psychosocial effects in cancer-related circadian disruption," concluded the study’s authors, led by Dr. Eric Dedert of Duke University Medical Center and the Veterans Affairs Medical Center in Durham, N.C.

The fact that circadian disruption was significant in a subset of patients a mean 19 days after diagnosis suggests that there may be no time to waste in identifying and treating potentially maladaptive coping responses that could impact not only their adjustment, but also their prognosis.

The study followed 57 women (mean age, 52 years) scheduled for breast cancer surgery, 54 of whom had just received a primary diagnosis and 3 who were facing surgery for recurrent disease. Psychological coping was measured in these patients, along with salivary cortisol and rest/activity circadian rhythms for 4 days.

Those with intrusive thoughts related to their diagnosis and avoidant coping styles (denial, self-distraction, and behavioral disengagement) were statistically more likely to demonstrate uneven rest/activity circadian rhythms and daytime sedentariness.

"In this newly diagnosed sample, intrusion-related inactivity during the daytime might be an indication that patients were seeking emotional numbness by disengaging from their environments and remaining sedentary," the authors noted.

"As indicated in the avoidance literature, this disengagement has the paradoxical effect of increasing distress."

The study has limitations, of course: a small sample size, a cross-sectional design, and the possibility that patients inclined to enroll might represent a biased sample in terms of coping styles. Of note, however, was the authors’ anecdotal report that some who refused to participate appeared to be "feeling overwhelmed with diagnosis and surgery planning," suggesting that the study may have underestimated the early impact of coping style on circadian rhythms.

The authors offered a comprehensive overview of a growing literature documenting intriguing (and ominous) associations among circadian rhythm disruption and physical, emotional, and social functioning in cancer patients, as well as tumor progression and mortality.

It’s a complex web that obviously needs much more elaboration before cause-and-effect conclusions might be drawn, but for now, the findings in early breast cancer patients certainly warrant paying close attention to coping from Day 1.

The study was funded by the University of Louisville (Ky.) Intramural Research Incentive Grant for Research on Women. The investigators reported no conflicts of interest.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

Even in the earliest days following a diagnosis of breast cancer, maladaptive coping styles are associated with a disruption in circadian rhythms – which are proven in metastatic disease to be a prognostic indicator of mortality.

The surprising finding, reported in the journal Annals of Behavioral Medicine (2012;44:10-20), holds potentially profound implications for the timing and tailoring of psychological interventions in newly diagnosed patients.

"Given that circadian cycles regulate tumor growth, we need greater understanding of possible psychosocial effects in cancer-related circadian disruption," concluded the study’s authors, led by Dr. Eric Dedert of Duke University Medical Center and the Veterans Affairs Medical Center in Durham, N.C.

The fact that circadian disruption was significant in a subset of patients a mean 19 days after diagnosis suggests that there may be no time to waste in identifying and treating potentially maladaptive coping responses that could impact not only their adjustment, but also their prognosis.

The study followed 57 women (mean age, 52 years) scheduled for breast cancer surgery, 54 of whom had just received a primary diagnosis and 3 who were facing surgery for recurrent disease. Psychological coping was measured in these patients, along with salivary cortisol and rest/activity circadian rhythms for 4 days.

Those with intrusive thoughts related to their diagnosis and avoidant coping styles (denial, self-distraction, and behavioral disengagement) were statistically more likely to demonstrate uneven rest/activity circadian rhythms and daytime sedentariness.

"In this newly diagnosed sample, intrusion-related inactivity during the daytime might be an indication that patients were seeking emotional numbness by disengaging from their environments and remaining sedentary," the authors noted.

"As indicated in the avoidance literature, this disengagement has the paradoxical effect of increasing distress."

The study has limitations, of course: a small sample size, a cross-sectional design, and the possibility that patients inclined to enroll might represent a biased sample in terms of coping styles. Of note, however, was the authors’ anecdotal report that some who refused to participate appeared to be "feeling overwhelmed with diagnosis and surgery planning," suggesting that the study may have underestimated the early impact of coping style on circadian rhythms.

The authors offered a comprehensive overview of a growing literature documenting intriguing (and ominous) associations among circadian rhythm disruption and physical, emotional, and social functioning in cancer patients, as well as tumor progression and mortality.

It’s a complex web that obviously needs much more elaboration before cause-and-effect conclusions might be drawn, but for now, the findings in early breast cancer patients certainly warrant paying close attention to coping from Day 1.

The study was funded by the University of Louisville (Ky.) Intramural Research Incentive Grant for Research on Women. The investigators reported no conflicts of interest.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Will They Still Give Strong to Lance Armstrong's Cancer Charity?

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Athlete's downfall brings out critics, defenders, and surge in donations.

It only took a day.

On Aug. 16, seven-time Tour de France–winning cyclist Lance Armstrong became just cyclist Lance Armstrong by announcing he was giving up his fight to disprove doping charges leveled in what he contended was an unfair investigation by the U.S. Anti-Doping Agency.

By Aug. 17, on Amazon.com, the most recent reader review for "It’s Not About the Bike: My Journey Back to Life," Lance Armstrong’s inspirational story about recovering from metastatic testicular cancer, read, "It’s not about the bike, it’s about the EPO."

"Naive, but still heartbroken," posted one fan on San Francisco’s Storify social media website.

"Burned by another fraud masquerading as a hero," scoffed Yahoo sports columnist Les Carpenter.

Reader Tom Noll, posting a comment in response to a story in USA Today, wrote, "You are a disgrace to all competitive athletes, and will forever be synonymous with cheating, mr dopestrong."

But these were not cancer survivors, wearers of the yellow bracelet, participants in Armstrong’s fundraising rides, and in some cases, recipients of the largess of Armstrong’s nearly 15-year-old charity, which has grown to a staff of 88 and annual revenues of roughly $50 million.

For the most part, cancer survivors would hear none of it.

In the wake of Armstrong’s announcement, donations soared, according to the Lance Armstrong Foundation at livestrong.org (not to be confused with livestrong.com, the Armstrong-approved fitness and vitamin site that shares the name). In just one day, $174,000 poured in, compared with $3,000 on an average day at the Austin, Tex.–based headquarters.

Money wasn’t the only symbol of impassioned support for Armstrong. Survivors took to the airwaves, to Facebook, and to blogs to defend a hero who inspired them through their struggles with chemotherapy, radiation, despair, and frayed hopes and dreams.

In response to a friend’s Facebook posting, one wrote, "... You should side with Lance. As a person who’s had cancer ... winning any bicycle race, let alone the Tour de France 7, 7, 7 times ... I am so angry and upset by this that I think I need another day to respond. I am so saddened by our country’s need to build someone up and tear them down. This is sick behavior. I probably have the chemo present in MY blood after 7 years."

Came one response, "Even if he IS guilty, it looks like they were ALL doping."

Then, meekly, another, "I want to side with him too, but if someone were making false accusations about me, I would fight to the death."

Social psychologists have an array of explanations (backed up by confirmatory data) for why we, as human beings, hold even more tightly to our beliefs about people, once they are challenged. We also harbor favorable biases about celebrities of all sorts, and unconsciously believe that a person we admire for one trait (good looks, for example, or, ahem, undeniable athletic prowess) must also be smart and honorable.

In the case of cancer patients, who felt befriended by Armstrong and inspired by his amazing story, the loyalty will likely hold strong, which makes the specter of betrayal – if it is so – particularly sad.

Of course, I have no way of knowing that Lance Armstrong doped to win, but I did cringe at the recollection, in a scathing profile in February’s Outside Magazine, of a 2009 Nike ad featuring Armstrong saying, "They say I’m arrogant ... a doper ... washed up ... a fraud." Following images of cancer patients struggling to regain their strength, he adds, referring to his critics: "I’m not back on my bike for them."

The Outside piece’s central theme is that Armstrong’s money-making enterprises are fuzzily distinguished from his nonprofit foundation, which has ceased funding basic cancer research.

Fair enough, but the foundation does do genuine good, from offering financial counseling, clinical trial referrals, fertility preservation awareness, support for young adults and survivors of all ages, YMCA-linked exercise programs, anti-stigma campaigns, and psychosocial support to direct monetary support for patients.

It prides itself on spending 82 cents of every dollar on programs, and the website Charity Navigator gives it a rating of 63 points out of 70, 4 stars. (By way of comparison, the American Cancer Society receives 2.)

I do hope that cancer survivors don’t suffer in the long run, once the fireworks die down and sponsors quietly consider how closely they want to be tied to an athlete celebrity stripped of his ribbons and authenticity. Forbes.com reported that he personally stands to lose at least $7 million in prize money he must return and perhaps $50 million in product endorsements over time.

 

 

And that’s just the sports money.

It seems likely that charitable enthusiasm may wane as well, as the reality sets in that Lance Armstrong, the invincible hero, was always just a man, and one who many must conclude compromised his ethics (and ironically, the sanctity of his cancer-free body) to win.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Athlete's downfall brings out critics, defenders, and surge in donations.
Athlete's downfall brings out critics, defenders, and surge in donations.

It only took a day.

On Aug. 16, seven-time Tour de France–winning cyclist Lance Armstrong became just cyclist Lance Armstrong by announcing he was giving up his fight to disprove doping charges leveled in what he contended was an unfair investigation by the U.S. Anti-Doping Agency.

By Aug. 17, on Amazon.com, the most recent reader review for "It’s Not About the Bike: My Journey Back to Life," Lance Armstrong’s inspirational story about recovering from metastatic testicular cancer, read, "It’s not about the bike, it’s about the EPO."

"Naive, but still heartbroken," posted one fan on San Francisco’s Storify social media website.

"Burned by another fraud masquerading as a hero," scoffed Yahoo sports columnist Les Carpenter.

Reader Tom Noll, posting a comment in response to a story in USA Today, wrote, "You are a disgrace to all competitive athletes, and will forever be synonymous with cheating, mr dopestrong."

But these were not cancer survivors, wearers of the yellow bracelet, participants in Armstrong’s fundraising rides, and in some cases, recipients of the largess of Armstrong’s nearly 15-year-old charity, which has grown to a staff of 88 and annual revenues of roughly $50 million.

For the most part, cancer survivors would hear none of it.

In the wake of Armstrong’s announcement, donations soared, according to the Lance Armstrong Foundation at livestrong.org (not to be confused with livestrong.com, the Armstrong-approved fitness and vitamin site that shares the name). In just one day, $174,000 poured in, compared with $3,000 on an average day at the Austin, Tex.–based headquarters.

Money wasn’t the only symbol of impassioned support for Armstrong. Survivors took to the airwaves, to Facebook, and to blogs to defend a hero who inspired them through their struggles with chemotherapy, radiation, despair, and frayed hopes and dreams.

In response to a friend’s Facebook posting, one wrote, "... You should side with Lance. As a person who’s had cancer ... winning any bicycle race, let alone the Tour de France 7, 7, 7 times ... I am so angry and upset by this that I think I need another day to respond. I am so saddened by our country’s need to build someone up and tear them down. This is sick behavior. I probably have the chemo present in MY blood after 7 years."

Came one response, "Even if he IS guilty, it looks like they were ALL doping."

Then, meekly, another, "I want to side with him too, but if someone were making false accusations about me, I would fight to the death."

Social psychologists have an array of explanations (backed up by confirmatory data) for why we, as human beings, hold even more tightly to our beliefs about people, once they are challenged. We also harbor favorable biases about celebrities of all sorts, and unconsciously believe that a person we admire for one trait (good looks, for example, or, ahem, undeniable athletic prowess) must also be smart and honorable.

In the case of cancer patients, who felt befriended by Armstrong and inspired by his amazing story, the loyalty will likely hold strong, which makes the specter of betrayal – if it is so – particularly sad.

Of course, I have no way of knowing that Lance Armstrong doped to win, but I did cringe at the recollection, in a scathing profile in February’s Outside Magazine, of a 2009 Nike ad featuring Armstrong saying, "They say I’m arrogant ... a doper ... washed up ... a fraud." Following images of cancer patients struggling to regain their strength, he adds, referring to his critics: "I’m not back on my bike for them."

The Outside piece’s central theme is that Armstrong’s money-making enterprises are fuzzily distinguished from his nonprofit foundation, which has ceased funding basic cancer research.

Fair enough, but the foundation does do genuine good, from offering financial counseling, clinical trial referrals, fertility preservation awareness, support for young adults and survivors of all ages, YMCA-linked exercise programs, anti-stigma campaigns, and psychosocial support to direct monetary support for patients.

It prides itself on spending 82 cents of every dollar on programs, and the website Charity Navigator gives it a rating of 63 points out of 70, 4 stars. (By way of comparison, the American Cancer Society receives 2.)

I do hope that cancer survivors don’t suffer in the long run, once the fireworks die down and sponsors quietly consider how closely they want to be tied to an athlete celebrity stripped of his ribbons and authenticity. Forbes.com reported that he personally stands to lose at least $7 million in prize money he must return and perhaps $50 million in product endorsements over time.

 

 

And that’s just the sports money.

It seems likely that charitable enthusiasm may wane as well, as the reality sets in that Lance Armstrong, the invincible hero, was always just a man, and one who many must conclude compromised his ethics (and ironically, the sanctity of his cancer-free body) to win.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

It only took a day.

On Aug. 16, seven-time Tour de France–winning cyclist Lance Armstrong became just cyclist Lance Armstrong by announcing he was giving up his fight to disprove doping charges leveled in what he contended was an unfair investigation by the U.S. Anti-Doping Agency.

By Aug. 17, on Amazon.com, the most recent reader review for "It’s Not About the Bike: My Journey Back to Life," Lance Armstrong’s inspirational story about recovering from metastatic testicular cancer, read, "It’s not about the bike, it’s about the EPO."

"Naive, but still heartbroken," posted one fan on San Francisco’s Storify social media website.

"Burned by another fraud masquerading as a hero," scoffed Yahoo sports columnist Les Carpenter.

Reader Tom Noll, posting a comment in response to a story in USA Today, wrote, "You are a disgrace to all competitive athletes, and will forever be synonymous with cheating, mr dopestrong."

But these were not cancer survivors, wearers of the yellow bracelet, participants in Armstrong’s fundraising rides, and in some cases, recipients of the largess of Armstrong’s nearly 15-year-old charity, which has grown to a staff of 88 and annual revenues of roughly $50 million.

For the most part, cancer survivors would hear none of it.

In the wake of Armstrong’s announcement, donations soared, according to the Lance Armstrong Foundation at livestrong.org (not to be confused with livestrong.com, the Armstrong-approved fitness and vitamin site that shares the name). In just one day, $174,000 poured in, compared with $3,000 on an average day at the Austin, Tex.–based headquarters.

Money wasn’t the only symbol of impassioned support for Armstrong. Survivors took to the airwaves, to Facebook, and to blogs to defend a hero who inspired them through their struggles with chemotherapy, radiation, despair, and frayed hopes and dreams.

In response to a friend’s Facebook posting, one wrote, "... You should side with Lance. As a person who’s had cancer ... winning any bicycle race, let alone the Tour de France 7, 7, 7 times ... I am so angry and upset by this that I think I need another day to respond. I am so saddened by our country’s need to build someone up and tear them down. This is sick behavior. I probably have the chemo present in MY blood after 7 years."

Came one response, "Even if he IS guilty, it looks like they were ALL doping."

Then, meekly, another, "I want to side with him too, but if someone were making false accusations about me, I would fight to the death."

Social psychologists have an array of explanations (backed up by confirmatory data) for why we, as human beings, hold even more tightly to our beliefs about people, once they are challenged. We also harbor favorable biases about celebrities of all sorts, and unconsciously believe that a person we admire for one trait (good looks, for example, or, ahem, undeniable athletic prowess) must also be smart and honorable.

In the case of cancer patients, who felt befriended by Armstrong and inspired by his amazing story, the loyalty will likely hold strong, which makes the specter of betrayal – if it is so – particularly sad.

Of course, I have no way of knowing that Lance Armstrong doped to win, but I did cringe at the recollection, in a scathing profile in February’s Outside Magazine, of a 2009 Nike ad featuring Armstrong saying, "They say I’m arrogant ... a doper ... washed up ... a fraud." Following images of cancer patients struggling to regain their strength, he adds, referring to his critics: "I’m not back on my bike for them."

The Outside piece’s central theme is that Armstrong’s money-making enterprises are fuzzily distinguished from his nonprofit foundation, which has ceased funding basic cancer research.

Fair enough, but the foundation does do genuine good, from offering financial counseling, clinical trial referrals, fertility preservation awareness, support for young adults and survivors of all ages, YMCA-linked exercise programs, anti-stigma campaigns, and psychosocial support to direct monetary support for patients.

It prides itself on spending 82 cents of every dollar on programs, and the website Charity Navigator gives it a rating of 63 points out of 70, 4 stars. (By way of comparison, the American Cancer Society receives 2.)

I do hope that cancer survivors don’t suffer in the long run, once the fireworks die down and sponsors quietly consider how closely they want to be tied to an athlete celebrity stripped of his ribbons and authenticity. Forbes.com reported that he personally stands to lose at least $7 million in prize money he must return and perhaps $50 million in product endorsements over time.

 

 

And that’s just the sports money.

It seems likely that charitable enthusiasm may wane as well, as the reality sets in that Lance Armstrong, the invincible hero, was always just a man, and one who many must conclude compromised his ethics (and ironically, the sanctity of his cancer-free body) to win.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Lurching Painfully Toward Meaningful Palliative Care

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Lurching Painfully Toward Meaningful Palliative Care

The history of palliative care in the United States could hardly be characterized as pain free. In the roughly 30 years since its introduction at a handful of U.S. institutions, it has been underfunded, ill focused, and widely misunderstood, not only by the patients whom it is intended to help, but also by the professionals who would seemingly be in the best position to relieve their suffering.

Although most cancer hospitals now host inpatient consultative palliative care teams, for example, they are summoned, on average, a week before a patient’s death, according to a recent survey (JAMA 2010:303:1054-61). That’s hardly aligned with the concept of integrating palliation – attention to relieving pain and suffering – from the day a patient is diagnosed with a serious disease.

Instead, the term palliative care remains, for many, confused with hospice care and is relegated to the same taboo topic list.

In fact, the survey published in JAMA demonstrated that few cancer centers specifically integrate palliation in outpatient clinics throughout a patient’s treatment course, or make it the focus of training and research.

Is it time to do just that?

A provisional clinical opinion issued earlier this year by the American Society of Clinical Oncology (ASCO) highlighted "strong evidence" of a survival benefit for patients with metastatic non-small cell lung cancer who received palliative care at the time of initial diagnosis, based on a powerful and widely publicized phase III randomized controlled trial (J. Clin. Oncol. 2012:30:880-7).

ASCO’s expert consensus panel overrode the reservations of the Supportive and Palliative Care Editorial Board of the National Cancer Institute’s Physician Data Query cancer database, and argued that palliative care should be considered "early in the course of illness for any [emphasis added] patient with metastatic cancer and/or high symptom burden."

To be sure, the evidence is scanty for just how that objective should be carried out.

And no wonder, considering that less than 1% of the National Institutes of Health budget is devoted to palliative care, despite the potential of such care to improve quality of life, to reduce undignified and futile interventions, to save billions of dollars, and perhaps even to extend overall survival (not to mention survival days that are worth living).

Still, the ASCO panel bravely provided a thoughtful and practical "working list of components" to be considered and studied, which included "a frank discussion of the prognosis (with a reasonable forecast of survival) and curability; explicit discussion of the medically appropriate goals of treatment; use of a standardized symptom assessment tool ... with symptom management based on the answers; screening for distress ... psychosocial assessment and support; and involvement of hospice early in the remaining lifetime of patients with a life-ending illness..."

Although I welcome this list, I wonder why the same approach should not be extended to all patients who are diagnosed with cancer and other life-threatening or life-altering diseases, and not only to those with metastatic cancer.

Evidently, some patients agree, including blogger Hollye Jacobs, a registered nurse who was recently diagnosed with breast cancer and who specifically sought out a palliative care specialist when she assembled her oncology treatment team.

"Whoa. Whoa. Whoa," she wrote to followers of her blog, The Silver Pen. "Are you wondering, ‘Why palliative care?’ Most people hear the phrase ‘palliative care’ and think ‘buy the plot ... she must be dying.’

"We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief," she wrote.

Ms. Jacobs, who broadly defined symptomatic relief to include fatigue, anxiety, shortness of breath, depression, nausea, and constipation, also turned to a palliative care specialist to coordinate her care and help her maintain a clear focus on the quality of her life.

In a recent letter to the editor in the Journal of Clinical Oncology, three medical oncologists argue that the best primary palliative care providers are oncologists like themselves. The creation of a new consultative specialty in palliation, they worry, might compromise the physician-patient relationship and have an unintended "fragmenting effect ... [potentially] increasing the complexity of care and, in some health care environments, actually increasing costs" (J. Clin. Oncol. 2012:30:2801-2).

"In a disease such as ovarian cancer, in which relapsed patients can live for years, and lung cancer, which has an improved survival with newer therapeutics, the physician-patient relationship is a rich and dynamic one because both the doctor and patient confront the trauma of multiple episodes of disease progression and the difficult decision to stop chemotherapy and transition to hospice care," wrote Dr. Mark A. Hoffman of Long Island Jewish Medical Center, and his associates.

 

 

"Overdelegating palliative care ... would deprive us of the opportunity to participate in the richest dimensions of the care of our patients," they continued.

What a refreshing position, and one that I think offers promise as a launching pad for discussion.

Informed by research, we’ll discover over time how best to deliver palliative care, when, and by whom. The important thing is that it happens, and soon, before more patients needlessly suffer in a blind and sometimes futile pursuit of "the cure."

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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The history of palliative care in the United States could hardly be characterized as pain free. In the roughly 30 years since its introduction at a handful of U.S. institutions, it has been underfunded, ill focused, and widely misunderstood, not only by the patients whom it is intended to help, but also by the professionals who would seemingly be in the best position to relieve their suffering.

Although most cancer hospitals now host inpatient consultative palliative care teams, for example, they are summoned, on average, a week before a patient’s death, according to a recent survey (JAMA 2010:303:1054-61). That’s hardly aligned with the concept of integrating palliation – attention to relieving pain and suffering – from the day a patient is diagnosed with a serious disease.

Instead, the term palliative care remains, for many, confused with hospice care and is relegated to the same taboo topic list.

In fact, the survey published in JAMA demonstrated that few cancer centers specifically integrate palliation in outpatient clinics throughout a patient’s treatment course, or make it the focus of training and research.

Is it time to do just that?

A provisional clinical opinion issued earlier this year by the American Society of Clinical Oncology (ASCO) highlighted "strong evidence" of a survival benefit for patients with metastatic non-small cell lung cancer who received palliative care at the time of initial diagnosis, based on a powerful and widely publicized phase III randomized controlled trial (J. Clin. Oncol. 2012:30:880-7).

ASCO’s expert consensus panel overrode the reservations of the Supportive and Palliative Care Editorial Board of the National Cancer Institute’s Physician Data Query cancer database, and argued that palliative care should be considered "early in the course of illness for any [emphasis added] patient with metastatic cancer and/or high symptom burden."

To be sure, the evidence is scanty for just how that objective should be carried out.

And no wonder, considering that less than 1% of the National Institutes of Health budget is devoted to palliative care, despite the potential of such care to improve quality of life, to reduce undignified and futile interventions, to save billions of dollars, and perhaps even to extend overall survival (not to mention survival days that are worth living).

Still, the ASCO panel bravely provided a thoughtful and practical "working list of components" to be considered and studied, which included "a frank discussion of the prognosis (with a reasonable forecast of survival) and curability; explicit discussion of the medically appropriate goals of treatment; use of a standardized symptom assessment tool ... with symptom management based on the answers; screening for distress ... psychosocial assessment and support; and involvement of hospice early in the remaining lifetime of patients with a life-ending illness..."

Although I welcome this list, I wonder why the same approach should not be extended to all patients who are diagnosed with cancer and other life-threatening or life-altering diseases, and not only to those with metastatic cancer.

Evidently, some patients agree, including blogger Hollye Jacobs, a registered nurse who was recently diagnosed with breast cancer and who specifically sought out a palliative care specialist when she assembled her oncology treatment team.

"Whoa. Whoa. Whoa," she wrote to followers of her blog, The Silver Pen. "Are you wondering, ‘Why palliative care?’ Most people hear the phrase ‘palliative care’ and think ‘buy the plot ... she must be dying.’

"We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief," she wrote.

Ms. Jacobs, who broadly defined symptomatic relief to include fatigue, anxiety, shortness of breath, depression, nausea, and constipation, also turned to a palliative care specialist to coordinate her care and help her maintain a clear focus on the quality of her life.

In a recent letter to the editor in the Journal of Clinical Oncology, three medical oncologists argue that the best primary palliative care providers are oncologists like themselves. The creation of a new consultative specialty in palliation, they worry, might compromise the physician-patient relationship and have an unintended "fragmenting effect ... [potentially] increasing the complexity of care and, in some health care environments, actually increasing costs" (J. Clin. Oncol. 2012:30:2801-2).

"In a disease such as ovarian cancer, in which relapsed patients can live for years, and lung cancer, which has an improved survival with newer therapeutics, the physician-patient relationship is a rich and dynamic one because both the doctor and patient confront the trauma of multiple episodes of disease progression and the difficult decision to stop chemotherapy and transition to hospice care," wrote Dr. Mark A. Hoffman of Long Island Jewish Medical Center, and his associates.

 

 

"Overdelegating palliative care ... would deprive us of the opportunity to participate in the richest dimensions of the care of our patients," they continued.

What a refreshing position, and one that I think offers promise as a launching pad for discussion.

Informed by research, we’ll discover over time how best to deliver palliative care, when, and by whom. The important thing is that it happens, and soon, before more patients needlessly suffer in a blind and sometimes futile pursuit of "the cure."

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

The history of palliative care in the United States could hardly be characterized as pain free. In the roughly 30 years since its introduction at a handful of U.S. institutions, it has been underfunded, ill focused, and widely misunderstood, not only by the patients whom it is intended to help, but also by the professionals who would seemingly be in the best position to relieve their suffering.

Although most cancer hospitals now host inpatient consultative palliative care teams, for example, they are summoned, on average, a week before a patient’s death, according to a recent survey (JAMA 2010:303:1054-61). That’s hardly aligned with the concept of integrating palliation – attention to relieving pain and suffering – from the day a patient is diagnosed with a serious disease.

Instead, the term palliative care remains, for many, confused with hospice care and is relegated to the same taboo topic list.

In fact, the survey published in JAMA demonstrated that few cancer centers specifically integrate palliation in outpatient clinics throughout a patient’s treatment course, or make it the focus of training and research.

Is it time to do just that?

A provisional clinical opinion issued earlier this year by the American Society of Clinical Oncology (ASCO) highlighted "strong evidence" of a survival benefit for patients with metastatic non-small cell lung cancer who received palliative care at the time of initial diagnosis, based on a powerful and widely publicized phase III randomized controlled trial (J. Clin. Oncol. 2012:30:880-7).

ASCO’s expert consensus panel overrode the reservations of the Supportive and Palliative Care Editorial Board of the National Cancer Institute’s Physician Data Query cancer database, and argued that palliative care should be considered "early in the course of illness for any [emphasis added] patient with metastatic cancer and/or high symptom burden."

To be sure, the evidence is scanty for just how that objective should be carried out.

And no wonder, considering that less than 1% of the National Institutes of Health budget is devoted to palliative care, despite the potential of such care to improve quality of life, to reduce undignified and futile interventions, to save billions of dollars, and perhaps even to extend overall survival (not to mention survival days that are worth living).

Still, the ASCO panel bravely provided a thoughtful and practical "working list of components" to be considered and studied, which included "a frank discussion of the prognosis (with a reasonable forecast of survival) and curability; explicit discussion of the medically appropriate goals of treatment; use of a standardized symptom assessment tool ... with symptom management based on the answers; screening for distress ... psychosocial assessment and support; and involvement of hospice early in the remaining lifetime of patients with a life-ending illness..."

Although I welcome this list, I wonder why the same approach should not be extended to all patients who are diagnosed with cancer and other life-threatening or life-altering diseases, and not only to those with metastatic cancer.

Evidently, some patients agree, including blogger Hollye Jacobs, a registered nurse who was recently diagnosed with breast cancer and who specifically sought out a palliative care specialist when she assembled her oncology treatment team.

"Whoa. Whoa. Whoa," she wrote to followers of her blog, The Silver Pen. "Are you wondering, ‘Why palliative care?’ Most people hear the phrase ‘palliative care’ and think ‘buy the plot ... she must be dying.’

"We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief," she wrote.

Ms. Jacobs, who broadly defined symptomatic relief to include fatigue, anxiety, shortness of breath, depression, nausea, and constipation, also turned to a palliative care specialist to coordinate her care and help her maintain a clear focus on the quality of her life.

In a recent letter to the editor in the Journal of Clinical Oncology, three medical oncologists argue that the best primary palliative care providers are oncologists like themselves. The creation of a new consultative specialty in palliation, they worry, might compromise the physician-patient relationship and have an unintended "fragmenting effect ... [potentially] increasing the complexity of care and, in some health care environments, actually increasing costs" (J. Clin. Oncol. 2012:30:2801-2).

"In a disease such as ovarian cancer, in which relapsed patients can live for years, and lung cancer, which has an improved survival with newer therapeutics, the physician-patient relationship is a rich and dynamic one because both the doctor and patient confront the trauma of multiple episodes of disease progression and the difficult decision to stop chemotherapy and transition to hospice care," wrote Dr. Mark A. Hoffman of Long Island Jewish Medical Center, and his associates.

 

 

"Overdelegating palliative care ... would deprive us of the opportunity to participate in the richest dimensions of the care of our patients," they continued.

What a refreshing position, and one that I think offers promise as a launching pad for discussion.

Informed by research, we’ll discover over time how best to deliver palliative care, when, and by whom. The important thing is that it happens, and soon, before more patients needlessly suffer in a blind and sometimes futile pursuit of "the cure."

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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Cultivate 'Distress Tolerance' for Early-Stage Prostate Cancer

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Strategy reduces anxiety in the guy who just can’t say no to aggressive treatments.

Final results of the PIVOT trial offered no dramatic surprises, but reassuring confirmation of the increasingly accepted belief that watchful waiting is the best approach for low-risk prostate cancer. (N. Engl. J. Med. 2012; 367:203-213).

A thoughtful accompanying editorial offered perspective on this and other recent trials that suggest widespread use of aggressive treatments following detection of prostate cancer by PSA screening offer a "marginal benefit on the lifespan but at a considerable cost." Surgery and other radical procedures should be reserved for high grade "cancers that matter" – those most likely to be lethal, argue Dr. Ian M. Thompson Jr. of the University of Texas Health Science Center in San Antonio, and Catherine M. Tangen, Dr.P.H., of the Fred Hutchinson Cancer Research Center in Seattle.

Unfortunately, the findings will not put to rest the anxiety inherent in men who will be faced with decisions about whether to opt first for PSA screening, then for biopsies based on screening, and then for an array of possible treatments based on biopsy results. For many of those men, it will be hard to just say no.

Dr. Durado Brookes, director of prostate and colorectal cancer programs for the American Cancer Society, was quoted by the Los Angeles Times as saying, "When most men are told they have prostate cancer, their immediate thought is, ‘Oh my God, I’m going to die,’ and their immediate next step is, ‘Let’s do something about this.’ "

Action, rather than deliberation, is certainly the go-to position for most American men. For those who struggle with anxiety, knowledge that a cancer lies within their bodies may seem even more excruciating than going through with procedures that they might not actually need, and that may cause them harm.

In counseling anxious patients, psychologists focus on cultivating "distress tolerance." Patients learn to recognize physical and emotional signs of exaggerated panic, and to develop coping skills that essentially tell the brain’s deep fear center, the amygdala, to "chill out," as they logically contemplate the true scope of a perceived threat.

It takes practice, and patients often resist talking about or even thinking about the looming objects of their distress. But exposure to the threat, scientists have found, is key. And the good news is, cognitive and behavioral therapy for anxiety is quite successful for most patients, even using short-term interventions.

Talking to men with low-risk prostate cancer about the wise option of "watchful waiting" takes special skill, to convey the facts while competing with the hair-on-fire amygdala-fueled rants going on inside his head and the adamant opinions of his sister-in-law, neighbor, and the guy on his bowling team that he needs to get to surgery, and pronto, since "watchful waiting" is just part of the conspiracy to ration care.

What I think will help is to review with such patients the evolution of your own thinking about treatment of early-stage prostate cancer, explaining what research and clinical experiences led you to offer the advice you do.

Provide links to web sites or summaries that clearly summarize the latest research, and offer, if you can, a follow-up appointment to discuss what your patient has read.

Finally, tell the patient you care about him personally: his goals, his relationships and sexuality, and the quality of his life, as well as his lifespan. Let him know that you consider it a relief that he doesn’t require radical treatment because he doesn’t have what Dr. Thompson and Dr. Tangen would consider a "cancer that matters." Because he does matter, very much.

Your patients can tolerate the distress of "watchful waiting." It’ll get easier for them over time, as they live their lives well.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Strategy reduces anxiety in the guy who just can’t say no to aggressive treatments.
Strategy reduces anxiety in the guy who just can’t say no to aggressive treatments.

Final results of the PIVOT trial offered no dramatic surprises, but reassuring confirmation of the increasingly accepted belief that watchful waiting is the best approach for low-risk prostate cancer. (N. Engl. J. Med. 2012; 367:203-213).

A thoughtful accompanying editorial offered perspective on this and other recent trials that suggest widespread use of aggressive treatments following detection of prostate cancer by PSA screening offer a "marginal benefit on the lifespan but at a considerable cost." Surgery and other radical procedures should be reserved for high grade "cancers that matter" – those most likely to be lethal, argue Dr. Ian M. Thompson Jr. of the University of Texas Health Science Center in San Antonio, and Catherine M. Tangen, Dr.P.H., of the Fred Hutchinson Cancer Research Center in Seattle.

Unfortunately, the findings will not put to rest the anxiety inherent in men who will be faced with decisions about whether to opt first for PSA screening, then for biopsies based on screening, and then for an array of possible treatments based on biopsy results. For many of those men, it will be hard to just say no.

Dr. Durado Brookes, director of prostate and colorectal cancer programs for the American Cancer Society, was quoted by the Los Angeles Times as saying, "When most men are told they have prostate cancer, their immediate thought is, ‘Oh my God, I’m going to die,’ and their immediate next step is, ‘Let’s do something about this.’ "

Action, rather than deliberation, is certainly the go-to position for most American men. For those who struggle with anxiety, knowledge that a cancer lies within their bodies may seem even more excruciating than going through with procedures that they might not actually need, and that may cause them harm.

In counseling anxious patients, psychologists focus on cultivating "distress tolerance." Patients learn to recognize physical and emotional signs of exaggerated panic, and to develop coping skills that essentially tell the brain’s deep fear center, the amygdala, to "chill out," as they logically contemplate the true scope of a perceived threat.

It takes practice, and patients often resist talking about or even thinking about the looming objects of their distress. But exposure to the threat, scientists have found, is key. And the good news is, cognitive and behavioral therapy for anxiety is quite successful for most patients, even using short-term interventions.

Talking to men with low-risk prostate cancer about the wise option of "watchful waiting" takes special skill, to convey the facts while competing with the hair-on-fire amygdala-fueled rants going on inside his head and the adamant opinions of his sister-in-law, neighbor, and the guy on his bowling team that he needs to get to surgery, and pronto, since "watchful waiting" is just part of the conspiracy to ration care.

What I think will help is to review with such patients the evolution of your own thinking about treatment of early-stage prostate cancer, explaining what research and clinical experiences led you to offer the advice you do.

Provide links to web sites or summaries that clearly summarize the latest research, and offer, if you can, a follow-up appointment to discuss what your patient has read.

Finally, tell the patient you care about him personally: his goals, his relationships and sexuality, and the quality of his life, as well as his lifespan. Let him know that you consider it a relief that he doesn’t require radical treatment because he doesn’t have what Dr. Thompson and Dr. Tangen would consider a "cancer that matters." Because he does matter, very much.

Your patients can tolerate the distress of "watchful waiting." It’ll get easier for them over time, as they live their lives well.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

Final results of the PIVOT trial offered no dramatic surprises, but reassuring confirmation of the increasingly accepted belief that watchful waiting is the best approach for low-risk prostate cancer. (N. Engl. J. Med. 2012; 367:203-213).

A thoughtful accompanying editorial offered perspective on this and other recent trials that suggest widespread use of aggressive treatments following detection of prostate cancer by PSA screening offer a "marginal benefit on the lifespan but at a considerable cost." Surgery and other radical procedures should be reserved for high grade "cancers that matter" – those most likely to be lethal, argue Dr. Ian M. Thompson Jr. of the University of Texas Health Science Center in San Antonio, and Catherine M. Tangen, Dr.P.H., of the Fred Hutchinson Cancer Research Center in Seattle.

Unfortunately, the findings will not put to rest the anxiety inherent in men who will be faced with decisions about whether to opt first for PSA screening, then for biopsies based on screening, and then for an array of possible treatments based on biopsy results. For many of those men, it will be hard to just say no.

Dr. Durado Brookes, director of prostate and colorectal cancer programs for the American Cancer Society, was quoted by the Los Angeles Times as saying, "When most men are told they have prostate cancer, their immediate thought is, ‘Oh my God, I’m going to die,’ and their immediate next step is, ‘Let’s do something about this.’ "

Action, rather than deliberation, is certainly the go-to position for most American men. For those who struggle with anxiety, knowledge that a cancer lies within their bodies may seem even more excruciating than going through with procedures that they might not actually need, and that may cause them harm.

In counseling anxious patients, psychologists focus on cultivating "distress tolerance." Patients learn to recognize physical and emotional signs of exaggerated panic, and to develop coping skills that essentially tell the brain’s deep fear center, the amygdala, to "chill out," as they logically contemplate the true scope of a perceived threat.

It takes practice, and patients often resist talking about or even thinking about the looming objects of their distress. But exposure to the threat, scientists have found, is key. And the good news is, cognitive and behavioral therapy for anxiety is quite successful for most patients, even using short-term interventions.

Talking to men with low-risk prostate cancer about the wise option of "watchful waiting" takes special skill, to convey the facts while competing with the hair-on-fire amygdala-fueled rants going on inside his head and the adamant opinions of his sister-in-law, neighbor, and the guy on his bowling team that he needs to get to surgery, and pronto, since "watchful waiting" is just part of the conspiracy to ration care.

What I think will help is to review with such patients the evolution of your own thinking about treatment of early-stage prostate cancer, explaining what research and clinical experiences led you to offer the advice you do.

Provide links to web sites or summaries that clearly summarize the latest research, and offer, if you can, a follow-up appointment to discuss what your patient has read.

Finally, tell the patient you care about him personally: his goals, his relationships and sexuality, and the quality of his life, as well as his lifespan. Let him know that you consider it a relief that he doesn’t require radical treatment because he doesn’t have what Dr. Thompson and Dr. Tangen would consider a "cancer that matters." Because he does matter, very much.

Your patients can tolerate the distress of "watchful waiting." It’ll get easier for them over time, as they live their lives well.

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

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Name That Rose: A Guide to Mental Health Professionals

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Oncologists, perhaps, are all-too-familiar with Professional Title Confusion, the disorder that leads people to ask about molting at cocktail (cockatiel?) parties when they assume the practitioner is an ornithologist.

Pity the poor anesthesiologists, who, it’s been said, are mistaken not only for anesthetists, but aestheticians as well. Or gynecologists, who must have to explain that they explore neither family trees nor sedimentary rock.

In the world of mental health, Professional Title Confusion is rampant, and getting more confusing with the dawning of the age of life coaches, psychic counselors, and aromatherapists.

The most common mix-up among patients (but few physicians) is the distinction between a psychiatrist (an MD who can prescribe medications) and a psychologist, who provides psychotherapy. Licensed clinical psychologists possess doctoral degrees: either a PhD (generally a degree emphasizing research and clinical practice) or a PsyD (a "practitioner/scholar" degree emphasizing counseling).

Psychologists see patients with serious mental illness as well as individuals, couples, and families facing adjustment challenges. They conduct psychological testing. As in medicine, some specialize (i.e., neuropsychologists, health psychologists, and forensic psychologists). Their postgraduate training generally lasts 6-8 years, including a yearlong internship and almost always, a dissertation.

Educational or school psychologists, on the other hand, may or may not have doctoral degrees, but are licensed to provide specialized care within the school setting, including testing for learning disabilities.

Here’s a quick primer on the other mental health specialists you may encounter in your practice setting (or in the ads of your local independent newspaper.)

LCSW: Licensed clinical social workers, like psychologists, receive training in family dynamics and psychotherapy, but they also have a special expertise in advocacy and identification of community resources for patients. They possess at least a master’s degree (MSW) and have done extensive field work prior to being licensed by their respective states. Some have a doctoral degree (PhD or DSW) and conduct research. In the field of oncology, LCSWs are often core members of the psychosocial team.

MFT: Marriage and Family Therapists are also sometimes called LMFTs (Licensed Marriage and Family Therapists) or MFCCs (Marriage, Family, and Child Counselors). They possess master’s degrees in counseling, have done training in the field, and are licensed by their respective states.

Psychiatric Nurse/Psychiatric–Mental Health Nurse: These are registered nurses who specialize in psychiatric illness. Advanced practice registered nurses who are PMH APRNs possess master’s or doctorate degrees and have more autonomy, in some cases prescribing medications.

Counselor or psychotherapist: Although they imply legitimacy, these are generic terms that describe what a person does, rather than his or her credentials.

Psychoanalyst: This term describes a person who approaches psychotherapy based on theoretical principles first outlined by Sigmund Freud, generally after receiving highly specialized training in the method. It is not a licensing term, but an approach, and does not indicate whether or not the psychoanalyst is a psychologist, psychiatrist, or other mental health professional.

Child life specialist: These behavior specialists with training in child development and family dynamics during illness are likely to be found in hospital settings. They generally hold bachelor’s or master’s degrees and may provide support during procedures or work with families in meeting specific targeted goals. They are not licensed at the state level, but many are certified by the Child Life Council, a nonprofit organization.

Art therapist, music therapist, poetry therapist, dance therapist: These alternative therapists may come from any of the fields listed above, or from the artistic disciplines themselves. They do not hold licenses in these areas, but each field of specialty has one or more organizations that outline training standards and certification.

Life coach: This is a person who helps people achieve personal goals. No licensure is required but independent organizations may recommend training or provide certification.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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Oncologists, perhaps, are all-too-familiar with Professional Title Confusion, the disorder that leads people to ask about molting at cocktail (cockatiel?) parties when they assume the practitioner is an ornithologist.

Pity the poor anesthesiologists, who, it’s been said, are mistaken not only for anesthetists, but aestheticians as well. Or gynecologists, who must have to explain that they explore neither family trees nor sedimentary rock.

In the world of mental health, Professional Title Confusion is rampant, and getting more confusing with the dawning of the age of life coaches, psychic counselors, and aromatherapists.

The most common mix-up among patients (but few physicians) is the distinction between a psychiatrist (an MD who can prescribe medications) and a psychologist, who provides psychotherapy. Licensed clinical psychologists possess doctoral degrees: either a PhD (generally a degree emphasizing research and clinical practice) or a PsyD (a "practitioner/scholar" degree emphasizing counseling).

Psychologists see patients with serious mental illness as well as individuals, couples, and families facing adjustment challenges. They conduct psychological testing. As in medicine, some specialize (i.e., neuropsychologists, health psychologists, and forensic psychologists). Their postgraduate training generally lasts 6-8 years, including a yearlong internship and almost always, a dissertation.

Educational or school psychologists, on the other hand, may or may not have doctoral degrees, but are licensed to provide specialized care within the school setting, including testing for learning disabilities.

Here’s a quick primer on the other mental health specialists you may encounter in your practice setting (or in the ads of your local independent newspaper.)

LCSW: Licensed clinical social workers, like psychologists, receive training in family dynamics and psychotherapy, but they also have a special expertise in advocacy and identification of community resources for patients. They possess at least a master’s degree (MSW) and have done extensive field work prior to being licensed by their respective states. Some have a doctoral degree (PhD or DSW) and conduct research. In the field of oncology, LCSWs are often core members of the psychosocial team.

MFT: Marriage and Family Therapists are also sometimes called LMFTs (Licensed Marriage and Family Therapists) or MFCCs (Marriage, Family, and Child Counselors). They possess master’s degrees in counseling, have done training in the field, and are licensed by their respective states.

Psychiatric Nurse/Psychiatric–Mental Health Nurse: These are registered nurses who specialize in psychiatric illness. Advanced practice registered nurses who are PMH APRNs possess master’s or doctorate degrees and have more autonomy, in some cases prescribing medications.

Counselor or psychotherapist: Although they imply legitimacy, these are generic terms that describe what a person does, rather than his or her credentials.

Psychoanalyst: This term describes a person who approaches psychotherapy based on theoretical principles first outlined by Sigmund Freud, generally after receiving highly specialized training in the method. It is not a licensing term, but an approach, and does not indicate whether or not the psychoanalyst is a psychologist, psychiatrist, or other mental health professional.

Child life specialist: These behavior specialists with training in child development and family dynamics during illness are likely to be found in hospital settings. They generally hold bachelor’s or master’s degrees and may provide support during procedures or work with families in meeting specific targeted goals. They are not licensed at the state level, but many are certified by the Child Life Council, a nonprofit organization.

Art therapist, music therapist, poetry therapist, dance therapist: These alternative therapists may come from any of the fields listed above, or from the artistic disciplines themselves. They do not hold licenses in these areas, but each field of specialty has one or more organizations that outline training standards and certification.

Life coach: This is a person who helps people achieve personal goals. No licensure is required but independent organizations may recommend training or provide certification.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

Oncologists, perhaps, are all-too-familiar with Professional Title Confusion, the disorder that leads people to ask about molting at cocktail (cockatiel?) parties when they assume the practitioner is an ornithologist.

Pity the poor anesthesiologists, who, it’s been said, are mistaken not only for anesthetists, but aestheticians as well. Or gynecologists, who must have to explain that they explore neither family trees nor sedimentary rock.

In the world of mental health, Professional Title Confusion is rampant, and getting more confusing with the dawning of the age of life coaches, psychic counselors, and aromatherapists.

The most common mix-up among patients (but few physicians) is the distinction between a psychiatrist (an MD who can prescribe medications) and a psychologist, who provides psychotherapy. Licensed clinical psychologists possess doctoral degrees: either a PhD (generally a degree emphasizing research and clinical practice) or a PsyD (a "practitioner/scholar" degree emphasizing counseling).

Psychologists see patients with serious mental illness as well as individuals, couples, and families facing adjustment challenges. They conduct psychological testing. As in medicine, some specialize (i.e., neuropsychologists, health psychologists, and forensic psychologists). Their postgraduate training generally lasts 6-8 years, including a yearlong internship and almost always, a dissertation.

Educational or school psychologists, on the other hand, may or may not have doctoral degrees, but are licensed to provide specialized care within the school setting, including testing for learning disabilities.

Here’s a quick primer on the other mental health specialists you may encounter in your practice setting (or in the ads of your local independent newspaper.)

LCSW: Licensed clinical social workers, like psychologists, receive training in family dynamics and psychotherapy, but they also have a special expertise in advocacy and identification of community resources for patients. They possess at least a master’s degree (MSW) and have done extensive field work prior to being licensed by their respective states. Some have a doctoral degree (PhD or DSW) and conduct research. In the field of oncology, LCSWs are often core members of the psychosocial team.

MFT: Marriage and Family Therapists are also sometimes called LMFTs (Licensed Marriage and Family Therapists) or MFCCs (Marriage, Family, and Child Counselors). They possess master’s degrees in counseling, have done training in the field, and are licensed by their respective states.

Psychiatric Nurse/Psychiatric–Mental Health Nurse: These are registered nurses who specialize in psychiatric illness. Advanced practice registered nurses who are PMH APRNs possess master’s or doctorate degrees and have more autonomy, in some cases prescribing medications.

Counselor or psychotherapist: Although they imply legitimacy, these are generic terms that describe what a person does, rather than his or her credentials.

Psychoanalyst: This term describes a person who approaches psychotherapy based on theoretical principles first outlined by Sigmund Freud, generally after receiving highly specialized training in the method. It is not a licensing term, but an approach, and does not indicate whether or not the psychoanalyst is a psychologist, psychiatrist, or other mental health professional.

Child life specialist: These behavior specialists with training in child development and family dynamics during illness are likely to be found in hospital settings. They generally hold bachelor’s or master’s degrees and may provide support during procedures or work with families in meeting specific targeted goals. They are not licensed at the state level, but many are certified by the Child Life Council, a nonprofit organization.

Art therapist, music therapist, poetry therapist, dance therapist: These alternative therapists may come from any of the fields listed above, or from the artistic disciplines themselves. They do not hold licenses in these areas, but each field of specialty has one or more organizations that outline training standards and certification.

Life coach: This is a person who helps people achieve personal goals. No licensure is required but independent organizations may recommend training or provide certification.

Dr. Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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BRCA1/2: When to Tell the Kids

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During this dawning of the genetic age, the question "What do we tell the kids?" has taken on added significance.

Families debate whether to learn their genetic risk for serious diseases, and whether to share that knowledge with their children, once they know. Should Huntington’s disease, amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease), or BRCA1/2 test results remain a family secret?

The issue is infused with ethical, medical, practical, and personal ramifications, with no one "right" answer for any disease, family, or individual child.

A new study published in the journal Cancer adds context to the question, accounting for the largest (253 parents of 505 children) cohort to date of parents who underwent testing to see whether they carried the BRCA1/2 gene, and who agreed to speak to researchers about whether and when they shared their test results. (Cancer 2012;118:3417-25)

Many of the findings are not surprising.

Most (66%) children were informed of the result of their parents’ tests.

Girls were more likely to learn these results than were boys, and older children more likely than younger children to be given this information. Interestingly, favorable results were more likely to be shared with offspring, suggesting that parents may have wanted to alleviate their children’s concerns about an illness that may have hung over the family like a sense of doom.

The mean age at parental disclosure was 17 years.

Importantly, though, more than 20% of offspring less than 10 years old also learned the result of the test, with this group more likely than other children to be perceived by their parents as distressed (defined as upset, scared, avoidant, or fatalistic), confused, or inquisitive.

When ethicists and parents ponder the potential benefits of sharing health risk information with children, a key question is whether they are likely to be able to gain something from the knowledge: an insight into their own health, for example, or a sense of relief about their future.

In the case of diseases caused by known genetic mutations, preimplantation genetic diagnosis might prevent children from passing on an inherited illness to their own offspring. The authors discuss how effective communication of hereditary risk, properly timed, might represent a "teachable moment" about healthy lifestyle choices.

Certainly, these are worthy considerations and would encourage most parents to open the pages of the family’s health history to adolescents.

Where I think clinicians might pause in recommending full and complete disclosure of risk information is with younger children, those under-10-year-olds who sound troubled and puzzled about what they heard.

Yes, small children should know when mom, dad, or a grandparent has a disease that explains tangible changes like hair loss, fatigue, or a hospital stay. But a small child can’t fathom genetics or abstract risk, nor should he or she be expected to make lifestyle choices accordingly.

Far more reasonable, I think, is to suggest that genetic test results be shared at a developmentally appropriate age, ideally adolescence, within the context of learning about other risks to health that they can understand and actually do something about.

Betsy Bates Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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During this dawning of the genetic age, the question "What do we tell the kids?" has taken on added significance.

Families debate whether to learn their genetic risk for serious diseases, and whether to share that knowledge with their children, once they know. Should Huntington’s disease, amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease), or BRCA1/2 test results remain a family secret?

The issue is infused with ethical, medical, practical, and personal ramifications, with no one "right" answer for any disease, family, or individual child.

A new study published in the journal Cancer adds context to the question, accounting for the largest (253 parents of 505 children) cohort to date of parents who underwent testing to see whether they carried the BRCA1/2 gene, and who agreed to speak to researchers about whether and when they shared their test results. (Cancer 2012;118:3417-25)

Many of the findings are not surprising.

Most (66%) children were informed of the result of their parents’ tests.

Girls were more likely to learn these results than were boys, and older children more likely than younger children to be given this information. Interestingly, favorable results were more likely to be shared with offspring, suggesting that parents may have wanted to alleviate their children’s concerns about an illness that may have hung over the family like a sense of doom.

The mean age at parental disclosure was 17 years.

Importantly, though, more than 20% of offspring less than 10 years old also learned the result of the test, with this group more likely than other children to be perceived by their parents as distressed (defined as upset, scared, avoidant, or fatalistic), confused, or inquisitive.

When ethicists and parents ponder the potential benefits of sharing health risk information with children, a key question is whether they are likely to be able to gain something from the knowledge: an insight into their own health, for example, or a sense of relief about their future.

In the case of diseases caused by known genetic mutations, preimplantation genetic diagnosis might prevent children from passing on an inherited illness to their own offspring. The authors discuss how effective communication of hereditary risk, properly timed, might represent a "teachable moment" about healthy lifestyle choices.

Certainly, these are worthy considerations and would encourage most parents to open the pages of the family’s health history to adolescents.

Where I think clinicians might pause in recommending full and complete disclosure of risk information is with younger children, those under-10-year-olds who sound troubled and puzzled about what they heard.

Yes, small children should know when mom, dad, or a grandparent has a disease that explains tangible changes like hair loss, fatigue, or a hospital stay. But a small child can’t fathom genetics or abstract risk, nor should he or she be expected to make lifestyle choices accordingly.

Far more reasonable, I think, is to suggest that genetic test results be shared at a developmentally appropriate age, ideally adolescence, within the context of learning about other risks to health that they can understand and actually do something about.

Betsy Bates Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

During this dawning of the genetic age, the question "What do we tell the kids?" has taken on added significance.

Families debate whether to learn their genetic risk for serious diseases, and whether to share that knowledge with their children, once they know. Should Huntington’s disease, amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease), or BRCA1/2 test results remain a family secret?

The issue is infused with ethical, medical, practical, and personal ramifications, with no one "right" answer for any disease, family, or individual child.

A new study published in the journal Cancer adds context to the question, accounting for the largest (253 parents of 505 children) cohort to date of parents who underwent testing to see whether they carried the BRCA1/2 gene, and who agreed to speak to researchers about whether and when they shared their test results. (Cancer 2012;118:3417-25)

Many of the findings are not surprising.

Most (66%) children were informed of the result of their parents’ tests.

Girls were more likely to learn these results than were boys, and older children more likely than younger children to be given this information. Interestingly, favorable results were more likely to be shared with offspring, suggesting that parents may have wanted to alleviate their children’s concerns about an illness that may have hung over the family like a sense of doom.

The mean age at parental disclosure was 17 years.

Importantly, though, more than 20% of offspring less than 10 years old also learned the result of the test, with this group more likely than other children to be perceived by their parents as distressed (defined as upset, scared, avoidant, or fatalistic), confused, or inquisitive.

When ethicists and parents ponder the potential benefits of sharing health risk information with children, a key question is whether they are likely to be able to gain something from the knowledge: an insight into their own health, for example, or a sense of relief about their future.

In the case of diseases caused by known genetic mutations, preimplantation genetic diagnosis might prevent children from passing on an inherited illness to their own offspring. The authors discuss how effective communication of hereditary risk, properly timed, might represent a "teachable moment" about healthy lifestyle choices.

Certainly, these are worthy considerations and would encourage most parents to open the pages of the family’s health history to adolescents.

Where I think clinicians might pause in recommending full and complete disclosure of risk information is with younger children, those under-10-year-olds who sound troubled and puzzled about what they heard.

Yes, small children should know when mom, dad, or a grandparent has a disease that explains tangible changes like hair loss, fatigue, or a hospital stay. But a small child can’t fathom genetics or abstract risk, nor should he or she be expected to make lifestyle choices accordingly.

Far more reasonable, I think, is to suggest that genetic test results be shared at a developmentally appropriate age, ideally adolescence, within the context of learning about other risks to health that they can understand and actually do something about.

Betsy Bates Freed is a clinical psychologist in Santa Barbara, Calif., and a medical journalist.

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