User login
Papillary thyroid cancer is widely known as the “good cancer.” This term has been around for years and is used ubiquitously. Some think it’s “appropriate” because the cancer is highly treatable and has good survival rates. Yet, recent research, provider experiences, and patient feedback suggest the term should no longer be used.
Papillary is the most common type of thyroid cancer, comprising about 70%-80% of all thyroid cancers. It tends to grow slowly and “has a generally excellent outlook, even if there is spread to the lymph nodes,” according to the American Thyroid Association.
This “excellent outlook” can prompt a physician to call it a “good” cancer.
“There is often a perception that a patient is diagnosed, treated, and then once treatment is complete, gets to go back to their ‘normal’ lives,” said Fiona Schulte, PhD, RPsych, of the University of Calgary, Alberta, Canada.
“The surgery and other treatments thyroid patients may require are not benign and leave patients with many long-term challenging consequences,” she said in an interview. “For many, treatment is just the beginning of a long journey of dealing with multiple late effects.”
Misguided ‘Support’
“I do believe the doctor’s intention is to bring comfort to the patient by saying they have a very curable disease,” Miranda Fidler-Benaoudia, MD, of the University of Calgary, said in an interview. Fidler-Benaoudia is the principal author of a recent survey/interview study of early-onset thyroid cancer survivors, titled “No such thing as a good cancer.” Despite the doctor’s intention, her team found that “for the majority of individuals interviewed, the response was actually quite negative.”
“Specifically,” she said, “thyroid cancer patients felt that the use of the term ‘good cancer’ minimized their diagnosis and experience, often making them feel like their struggles with the diagnosis and its treatment were not justified. While they were indeed cancer patients, they did not feel they could claim to be one because their prognosis was very positive or they didn’t have more intensive therapies like radiotherapy or chemotherapy.”
These feelings were echoed in a recent Moffitt Center article. When Emma Stevens learned she had thyroid cancer at age 19, she said she heard the same statements repeatedly, including: “At least it’s only thyroid cancer.” “It’s the good cancer, and easy to deal with.”
“These are such weird things to say to me,” said Stevens, now 26. “I know they didn’t have any ill will and they couldn’t see how such statements could be upsetting. It’s been my goal to shed some light on how what they see as encouraging thoughts can upset someone like me.”
In an article on the appropriateness of the term “good cancer,” Reese W. Randle, MD, now at Wake Forest University School of Medicine, Winston-Salem, North Carolina, and colleagues wrote, “Patients with papillary thyroid cancer commonly confront the perception that their malignancy is ‘good,’ but the favorable prognosis and treatability of the disease do not comprehensively represent their cancer fight.”
“The ‘good cancer’ perception is at the root of many mixed and confusing emotions,” they continued. “Clinicians emphasize optimistic outcomes, hoping to comfort, but they might inadvertently invalidate the impact thyroid cancer has on patients’ lives.”
Life-Altering
“Having a diagnosis of thyroid cancer, even with usually a very good prognosis, can be life-altering, said Caitlin P. McMullen, MD, a head and neck cancer specialist at Moffitt Cancer Center, Tampa, Florida.
Most papillary thyroid cancers are cured with surgery alone, sometimes followed by radioactive iodine, she said in an interview. “The surgery involves removing half (lobectomy), or sometimes all (total thyroidectomy), of the thyroid gland.” Patients with lymph node involvement have a longer surgery that includes lymph node removal.
Many patients must also remain on medication permanently to replace their thyroid hormone, she continued. And, after treatment is complete, “patients require regular follow up with bloodwork and imaging for many years to ensure the cancer does not return.”
“Repeated visits, medications, and testing can also result in financial toxicities and repeated disruptions for patients,” she added. “These downstream effects of a thyroid cancer diagnosis can significantly alter a patient’s life.”
Kaniksha Desai, MD, Endocrinology Quality Director at Stanford University School of Medicine, Palo Alto, California, said in an interview that thyroid cancer treatments carry some risks that shouldn’t be overlooked and may affect recovery for years. These include:
- Recurrent laryngeal nerve damage: Thyroid surgery can lead to vocal cord paralysis, affecting speech and swallowing.
- Hypoparathyroidism: Postsurgical damage to the parathyroid glands can cause long-term calcium regulation problems resulting in pain and emergency department visits as well as lifelong supplementation with calcium and vitamin D.
- Radioactive iodine (RAI) treatment: RAI can have side effects such as dry mouth, tear duct obstruction, salivary gland dysfunction, and an increased risk of secondary cancers.
- Psychosocial Impact: Being told they have cancer can create significant psychological distress for patients, including fear of recurrence, body image concerns, and anxiety, all of which persist even with a “good prognosis.”
Fidler-Benaoudia’s studies focused specifically on the psychosocial impact on younger patients. “Facing a cancer diagnosis at a young age really forces the person to hit the ‘pause button’ – they may need to take a break from school or work, and it may impact their relationships with their family and friends.”
“Even if their cancer has a very high survival rate, when a young person receives a cancer diagnosis they are often facing their own immortality for the first time, which can be very distressing,” she said. Many of her study participants also struggled to maintain appropriate thyroid hormone levels with medication, which left them feeling tired, losing hair or gaining weight. The surgery itself “can leave a substantial scar on the throat that is visible unless purposefully covered with clothing or accessories,” she noted. “We found that this scar impacted quite a few survivors’ body image.”
Awareness, Education
Two recent studies pointed to the need for clinicians to be aware of their patients’ reactions to a thyroid diagnosis. Susan C. Pitt, MD, associate professor of surgery and director of the endocrine surgery health services research program at the University of Michigan, Ann Arbor, and colleagues reviewed the literature on patient perception of receiving a thyroid diagnosis and found, “Fear and worry about cancer in general and the possibility for recurrence contribute to lasting psychological distress and decreased quality of life. Patients’ perceptions of their diagnosis and resulting emotional reactions influence treatment decision making and have the potential to contribute to decisions that may over-treat a low-risk thyroid cancer.”
In another recent study, Pitt and colleagues assessed fear of thyroid cancer in the general US population and found that close to half of 1136 respondents to an online survey had high levels of thyroid cancer-specific fear, particularly women and those under age 40. “Because disease-specific fear is associated with overtreatment, targeted education about the seriousness, incidence, and risk factors for developing thyroid cancer may decrease public fear and possibly overtreatment related to ‘scared decision-making,’” the authors concluded.
McMullen added, “Taking the time to educate the patient on the diagnosis, prognosis, and treatments can provide reassurance without being dismissive. Most patients are very receptive and understanding once things are explained thoroughly and their questions are answered. We find that factual information can be even more reassuring for patients than saying, ‘This is a good cancer.’”
Desai advised, “Clinicians should acknowledge the spectrum of experiences patients may have.” They should provide empathy and reassurance as well as personalized discussions regarding prognosis and treatment options. In addition, “they should focus on survivorship care by addressing both the long-term and short-term effects on health and lifestyle that can occur post treatment,” as well as the possible need for mental health support.
“I heard many times in residency that, ‘if you had to have cancer, have thyroid cancer,’ ” Malini Gupta, MD, director of G2Endo Endocrinology & Metabolism, Memphis, Tennessee, and vice chair of the American Association of Clinical Endocrinology’s Disease State Networks, said in an interview.
“One should not want any cancer,” she said. “There are some very aggressive tumor markers in differentiated thyroid cancer that can have a worse prognosis. There are many aspects of thyroid cancer treatment that cause anxiety and a stress burden. Recovery varies from person to person.”
“There needs to be education across all sectors of healthcare, particularly in primary care,” she added. “I personally have medullary thyroid cancer that I found myself while fixing my ultrasound. There are many aspects to survivorship.”
Fidler-Benaoudia, Schulte, McMullen, and Desai declared no competing interests. Gupta is on the speaker bureau for Amgen (Tepezza) and IBSA (Tirosint) and is a creative consultant for AbbVie.
A version of this article first appeared on Medscape.com.
Papillary thyroid cancer is widely known as the “good cancer.” This term has been around for years and is used ubiquitously. Some think it’s “appropriate” because the cancer is highly treatable and has good survival rates. Yet, recent research, provider experiences, and patient feedback suggest the term should no longer be used.
Papillary is the most common type of thyroid cancer, comprising about 70%-80% of all thyroid cancers. It tends to grow slowly and “has a generally excellent outlook, even if there is spread to the lymph nodes,” according to the American Thyroid Association.
This “excellent outlook” can prompt a physician to call it a “good” cancer.
“There is often a perception that a patient is diagnosed, treated, and then once treatment is complete, gets to go back to their ‘normal’ lives,” said Fiona Schulte, PhD, RPsych, of the University of Calgary, Alberta, Canada.
“The surgery and other treatments thyroid patients may require are not benign and leave patients with many long-term challenging consequences,” she said in an interview. “For many, treatment is just the beginning of a long journey of dealing with multiple late effects.”
Misguided ‘Support’
“I do believe the doctor’s intention is to bring comfort to the patient by saying they have a very curable disease,” Miranda Fidler-Benaoudia, MD, of the University of Calgary, said in an interview. Fidler-Benaoudia is the principal author of a recent survey/interview study of early-onset thyroid cancer survivors, titled “No such thing as a good cancer.” Despite the doctor’s intention, her team found that “for the majority of individuals interviewed, the response was actually quite negative.”
“Specifically,” she said, “thyroid cancer patients felt that the use of the term ‘good cancer’ minimized their diagnosis and experience, often making them feel like their struggles with the diagnosis and its treatment were not justified. While they were indeed cancer patients, they did not feel they could claim to be one because their prognosis was very positive or they didn’t have more intensive therapies like radiotherapy or chemotherapy.”
These feelings were echoed in a recent Moffitt Center article. When Emma Stevens learned she had thyroid cancer at age 19, she said she heard the same statements repeatedly, including: “At least it’s only thyroid cancer.” “It’s the good cancer, and easy to deal with.”
“These are such weird things to say to me,” said Stevens, now 26. “I know they didn’t have any ill will and they couldn’t see how such statements could be upsetting. It’s been my goal to shed some light on how what they see as encouraging thoughts can upset someone like me.”
In an article on the appropriateness of the term “good cancer,” Reese W. Randle, MD, now at Wake Forest University School of Medicine, Winston-Salem, North Carolina, and colleagues wrote, “Patients with papillary thyroid cancer commonly confront the perception that their malignancy is ‘good,’ but the favorable prognosis and treatability of the disease do not comprehensively represent their cancer fight.”
“The ‘good cancer’ perception is at the root of many mixed and confusing emotions,” they continued. “Clinicians emphasize optimistic outcomes, hoping to comfort, but they might inadvertently invalidate the impact thyroid cancer has on patients’ lives.”
Life-Altering
“Having a diagnosis of thyroid cancer, even with usually a very good prognosis, can be life-altering, said Caitlin P. McMullen, MD, a head and neck cancer specialist at Moffitt Cancer Center, Tampa, Florida.
Most papillary thyroid cancers are cured with surgery alone, sometimes followed by radioactive iodine, she said in an interview. “The surgery involves removing half (lobectomy), or sometimes all (total thyroidectomy), of the thyroid gland.” Patients with lymph node involvement have a longer surgery that includes lymph node removal.
Many patients must also remain on medication permanently to replace their thyroid hormone, she continued. And, after treatment is complete, “patients require regular follow up with bloodwork and imaging for many years to ensure the cancer does not return.”
“Repeated visits, medications, and testing can also result in financial toxicities and repeated disruptions for patients,” she added. “These downstream effects of a thyroid cancer diagnosis can significantly alter a patient’s life.”
Kaniksha Desai, MD, Endocrinology Quality Director at Stanford University School of Medicine, Palo Alto, California, said in an interview that thyroid cancer treatments carry some risks that shouldn’t be overlooked and may affect recovery for years. These include:
- Recurrent laryngeal nerve damage: Thyroid surgery can lead to vocal cord paralysis, affecting speech and swallowing.
- Hypoparathyroidism: Postsurgical damage to the parathyroid glands can cause long-term calcium regulation problems resulting in pain and emergency department visits as well as lifelong supplementation with calcium and vitamin D.
- Radioactive iodine (RAI) treatment: RAI can have side effects such as dry mouth, tear duct obstruction, salivary gland dysfunction, and an increased risk of secondary cancers.
- Psychosocial Impact: Being told they have cancer can create significant psychological distress for patients, including fear of recurrence, body image concerns, and anxiety, all of which persist even with a “good prognosis.”
Fidler-Benaoudia’s studies focused specifically on the psychosocial impact on younger patients. “Facing a cancer diagnosis at a young age really forces the person to hit the ‘pause button’ – they may need to take a break from school or work, and it may impact their relationships with their family and friends.”
“Even if their cancer has a very high survival rate, when a young person receives a cancer diagnosis they are often facing their own immortality for the first time, which can be very distressing,” she said. Many of her study participants also struggled to maintain appropriate thyroid hormone levels with medication, which left them feeling tired, losing hair or gaining weight. The surgery itself “can leave a substantial scar on the throat that is visible unless purposefully covered with clothing or accessories,” she noted. “We found that this scar impacted quite a few survivors’ body image.”
Awareness, Education
Two recent studies pointed to the need for clinicians to be aware of their patients’ reactions to a thyroid diagnosis. Susan C. Pitt, MD, associate professor of surgery and director of the endocrine surgery health services research program at the University of Michigan, Ann Arbor, and colleagues reviewed the literature on patient perception of receiving a thyroid diagnosis and found, “Fear and worry about cancer in general and the possibility for recurrence contribute to lasting psychological distress and decreased quality of life. Patients’ perceptions of their diagnosis and resulting emotional reactions influence treatment decision making and have the potential to contribute to decisions that may over-treat a low-risk thyroid cancer.”
In another recent study, Pitt and colleagues assessed fear of thyroid cancer in the general US population and found that close to half of 1136 respondents to an online survey had high levels of thyroid cancer-specific fear, particularly women and those under age 40. “Because disease-specific fear is associated with overtreatment, targeted education about the seriousness, incidence, and risk factors for developing thyroid cancer may decrease public fear and possibly overtreatment related to ‘scared decision-making,’” the authors concluded.
McMullen added, “Taking the time to educate the patient on the diagnosis, prognosis, and treatments can provide reassurance without being dismissive. Most patients are very receptive and understanding once things are explained thoroughly and their questions are answered. We find that factual information can be even more reassuring for patients than saying, ‘This is a good cancer.’”
Desai advised, “Clinicians should acknowledge the spectrum of experiences patients may have.” They should provide empathy and reassurance as well as personalized discussions regarding prognosis and treatment options. In addition, “they should focus on survivorship care by addressing both the long-term and short-term effects on health and lifestyle that can occur post treatment,” as well as the possible need for mental health support.
“I heard many times in residency that, ‘if you had to have cancer, have thyroid cancer,’ ” Malini Gupta, MD, director of G2Endo Endocrinology & Metabolism, Memphis, Tennessee, and vice chair of the American Association of Clinical Endocrinology’s Disease State Networks, said in an interview.
“One should not want any cancer,” she said. “There are some very aggressive tumor markers in differentiated thyroid cancer that can have a worse prognosis. There are many aspects of thyroid cancer treatment that cause anxiety and a stress burden. Recovery varies from person to person.”
“There needs to be education across all sectors of healthcare, particularly in primary care,” she added. “I personally have medullary thyroid cancer that I found myself while fixing my ultrasound. There are many aspects to survivorship.”
Fidler-Benaoudia, Schulte, McMullen, and Desai declared no competing interests. Gupta is on the speaker bureau for Amgen (Tepezza) and IBSA (Tirosint) and is a creative consultant for AbbVie.
A version of this article first appeared on Medscape.com.
Papillary thyroid cancer is widely known as the “good cancer.” This term has been around for years and is used ubiquitously. Some think it’s “appropriate” because the cancer is highly treatable and has good survival rates. Yet, recent research, provider experiences, and patient feedback suggest the term should no longer be used.
Papillary is the most common type of thyroid cancer, comprising about 70%-80% of all thyroid cancers. It tends to grow slowly and “has a generally excellent outlook, even if there is spread to the lymph nodes,” according to the American Thyroid Association.
This “excellent outlook” can prompt a physician to call it a “good” cancer.
“There is often a perception that a patient is diagnosed, treated, and then once treatment is complete, gets to go back to their ‘normal’ lives,” said Fiona Schulte, PhD, RPsych, of the University of Calgary, Alberta, Canada.
“The surgery and other treatments thyroid patients may require are not benign and leave patients with many long-term challenging consequences,” she said in an interview. “For many, treatment is just the beginning of a long journey of dealing with multiple late effects.”
Misguided ‘Support’
“I do believe the doctor’s intention is to bring comfort to the patient by saying they have a very curable disease,” Miranda Fidler-Benaoudia, MD, of the University of Calgary, said in an interview. Fidler-Benaoudia is the principal author of a recent survey/interview study of early-onset thyroid cancer survivors, titled “No such thing as a good cancer.” Despite the doctor’s intention, her team found that “for the majority of individuals interviewed, the response was actually quite negative.”
“Specifically,” she said, “thyroid cancer patients felt that the use of the term ‘good cancer’ minimized their diagnosis and experience, often making them feel like their struggles with the diagnosis and its treatment were not justified. While they were indeed cancer patients, they did not feel they could claim to be one because their prognosis was very positive or they didn’t have more intensive therapies like radiotherapy or chemotherapy.”
These feelings were echoed in a recent Moffitt Center article. When Emma Stevens learned she had thyroid cancer at age 19, she said she heard the same statements repeatedly, including: “At least it’s only thyroid cancer.” “It’s the good cancer, and easy to deal with.”
“These are such weird things to say to me,” said Stevens, now 26. “I know they didn’t have any ill will and they couldn’t see how such statements could be upsetting. It’s been my goal to shed some light on how what they see as encouraging thoughts can upset someone like me.”
In an article on the appropriateness of the term “good cancer,” Reese W. Randle, MD, now at Wake Forest University School of Medicine, Winston-Salem, North Carolina, and colleagues wrote, “Patients with papillary thyroid cancer commonly confront the perception that their malignancy is ‘good,’ but the favorable prognosis and treatability of the disease do not comprehensively represent their cancer fight.”
“The ‘good cancer’ perception is at the root of many mixed and confusing emotions,” they continued. “Clinicians emphasize optimistic outcomes, hoping to comfort, but they might inadvertently invalidate the impact thyroid cancer has on patients’ lives.”
Life-Altering
“Having a diagnosis of thyroid cancer, even with usually a very good prognosis, can be life-altering, said Caitlin P. McMullen, MD, a head and neck cancer specialist at Moffitt Cancer Center, Tampa, Florida.
Most papillary thyroid cancers are cured with surgery alone, sometimes followed by radioactive iodine, she said in an interview. “The surgery involves removing half (lobectomy), or sometimes all (total thyroidectomy), of the thyroid gland.” Patients with lymph node involvement have a longer surgery that includes lymph node removal.
Many patients must also remain on medication permanently to replace their thyroid hormone, she continued. And, after treatment is complete, “patients require regular follow up with bloodwork and imaging for many years to ensure the cancer does not return.”
“Repeated visits, medications, and testing can also result in financial toxicities and repeated disruptions for patients,” she added. “These downstream effects of a thyroid cancer diagnosis can significantly alter a patient’s life.”
Kaniksha Desai, MD, Endocrinology Quality Director at Stanford University School of Medicine, Palo Alto, California, said in an interview that thyroid cancer treatments carry some risks that shouldn’t be overlooked and may affect recovery for years. These include:
- Recurrent laryngeal nerve damage: Thyroid surgery can lead to vocal cord paralysis, affecting speech and swallowing.
- Hypoparathyroidism: Postsurgical damage to the parathyroid glands can cause long-term calcium regulation problems resulting in pain and emergency department visits as well as lifelong supplementation with calcium and vitamin D.
- Radioactive iodine (RAI) treatment: RAI can have side effects such as dry mouth, tear duct obstruction, salivary gland dysfunction, and an increased risk of secondary cancers.
- Psychosocial Impact: Being told they have cancer can create significant psychological distress for patients, including fear of recurrence, body image concerns, and anxiety, all of which persist even with a “good prognosis.”
Fidler-Benaoudia’s studies focused specifically on the psychosocial impact on younger patients. “Facing a cancer diagnosis at a young age really forces the person to hit the ‘pause button’ – they may need to take a break from school or work, and it may impact their relationships with their family and friends.”
“Even if their cancer has a very high survival rate, when a young person receives a cancer diagnosis they are often facing their own immortality for the first time, which can be very distressing,” she said. Many of her study participants also struggled to maintain appropriate thyroid hormone levels with medication, which left them feeling tired, losing hair or gaining weight. The surgery itself “can leave a substantial scar on the throat that is visible unless purposefully covered with clothing or accessories,” she noted. “We found that this scar impacted quite a few survivors’ body image.”
Awareness, Education
Two recent studies pointed to the need for clinicians to be aware of their patients’ reactions to a thyroid diagnosis. Susan C. Pitt, MD, associate professor of surgery and director of the endocrine surgery health services research program at the University of Michigan, Ann Arbor, and colleagues reviewed the literature on patient perception of receiving a thyroid diagnosis and found, “Fear and worry about cancer in general and the possibility for recurrence contribute to lasting psychological distress and decreased quality of life. Patients’ perceptions of their diagnosis and resulting emotional reactions influence treatment decision making and have the potential to contribute to decisions that may over-treat a low-risk thyroid cancer.”
In another recent study, Pitt and colleagues assessed fear of thyroid cancer in the general US population and found that close to half of 1136 respondents to an online survey had high levels of thyroid cancer-specific fear, particularly women and those under age 40. “Because disease-specific fear is associated with overtreatment, targeted education about the seriousness, incidence, and risk factors for developing thyroid cancer may decrease public fear and possibly overtreatment related to ‘scared decision-making,’” the authors concluded.
McMullen added, “Taking the time to educate the patient on the diagnosis, prognosis, and treatments can provide reassurance without being dismissive. Most patients are very receptive and understanding once things are explained thoroughly and their questions are answered. We find that factual information can be even more reassuring for patients than saying, ‘This is a good cancer.’”
Desai advised, “Clinicians should acknowledge the spectrum of experiences patients may have.” They should provide empathy and reassurance as well as personalized discussions regarding prognosis and treatment options. In addition, “they should focus on survivorship care by addressing both the long-term and short-term effects on health and lifestyle that can occur post treatment,” as well as the possible need for mental health support.
“I heard many times in residency that, ‘if you had to have cancer, have thyroid cancer,’ ” Malini Gupta, MD, director of G2Endo Endocrinology & Metabolism, Memphis, Tennessee, and vice chair of the American Association of Clinical Endocrinology’s Disease State Networks, said in an interview.
“One should not want any cancer,” she said. “There are some very aggressive tumor markers in differentiated thyroid cancer that can have a worse prognosis. There are many aspects of thyroid cancer treatment that cause anxiety and a stress burden. Recovery varies from person to person.”
“There needs to be education across all sectors of healthcare, particularly in primary care,” she added. “I personally have medullary thyroid cancer that I found myself while fixing my ultrasound. There are many aspects to survivorship.”
Fidler-Benaoudia, Schulte, McMullen, and Desai declared no competing interests. Gupta is on the speaker bureau for Amgen (Tepezza) and IBSA (Tirosint) and is a creative consultant for AbbVie.
A version of this article first appeared on Medscape.com.