Thyroid Cancer Newly Diagnosed Archives

Personalized Treatment Approaches in Advanced Thyroid Cancer Management

July 8, 2024/in Thyroid Cancer, Thyroid Cancer Activated, Thyroid Cancer Activated Experts, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Programs, Thyroid Cancer Treatment & Clinical Trials, Thyroid Cancer Video ND, Thyroid Cancer Video TC /by Kara Rayburn

Personalized Treatment Approaches in Advanced Thyroid Cancer Management from Patient Empowerment Network on Vimeo.

How can advanced thyroid cancer be managed in a personalized way? Expert Dr. Megan Haymart from the University of Michigan discusses personalized treatment approaches and patient advice for optimal care, shared decision-making, and support programs.

[ACT]IVATION TIP

“…if your disease has progressed and you’ve seen an endocrinologist and maybe they don’t routinely give these targeted treatments, make sure you’re referred to an appropriate person who does. Two, I would encourage individuals to make sure that they had tumor sequencing, which means they can look at the tumor and see what is the mutation.”

Related Resources:

Emerging Advancements in Thyroid Cancer Treatment

Addressing Socioeconomic Disparities in Thyroid Cancer Care

Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement

Transcript:

Lisa Hatfield:

Dr. Haymart, can you discuss the role of personalized medicine in managing advanced thyroid cancer, particularly tailoring treatments based on individual patient characteristics?

Dr. Megan Haymart:

So advanced thyroid cancer, when I think of those words I’m specifically talking about patients who have distant metastasis that is progressing. So it’s not just that they have a small site of sort of cancer recurrence that’s sort of stable. This is disease that’s progressing. And the things that have really changed in the past five to 10 years is we have more targeted treatments for these individuals.

There have been more clinical trials that have been completed, and these trials have shown which patients might be appropriate candidates for these treatments. And so my activation tip for this question is if you have advanced thyroid cancer, if you have disease that’s progressing, it’s not treated with standard therapy.

One, make sure you see physicians who are capable of treating this disease. So even though I see 95 percent of all thyroid cancer patients, I’m an endocrinologist and I actually, I’m not the one who gives these targeted treatments to the 5 percent or less who have advanced disease, I would refer them to my medical oncology colleague. And so, if your disease has progressed and you’ve seen an endocrinologist and maybe they don’t routinely give these targeted treatments, make sure you’re referred to an appropriate person who does.

Two, I would encourage individuals to make sure that they had tumor sequencing, which means they can look at the tumor and see what is the mutation. And it’s possible that there’s either an already available drug or a clinical trial that’s targeted towards their specific tumor mutation.

Lisa Hatfield:

Dr. Haymart, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their thyroid cancer? And what role do patient navigators or support programs play in improving outcomes for disadvantaged patients navigating the complexities of thyroid cancer treatments?

Dr. Megan Haymart:

So a key thing here for thyroid cancer for 95 percent of patients is you have time on your side. So patients shouldn’t feel rushed to make a decision. So you have your clinic visit, you don’t need to make a decision on your treatment by the end of the visit. You can gather more information, so you can read more using reliable resources that your physician recommends. You can talk to your friends and family members. You can tell your healthcare provider, “You know, I appreciate the information that you gave me. I need more time to process this. I’ll be in touch with you.”

So patients don’t need to feel rushed during that decision-making process. It’s important that they know that for most of the time, for thyroid cancer, it’s preference sensitive decisions, meaning shared decision-making is totally appropriate. There’s no right or wrong answer in many of these scenarios.

And so the patients can really tailor it to them and what their priorities are. There’s been less data on patient navigators in the realm of thyroid cancer, but for other cancers, it’s been shown to be very useful and helpful, and patients have had positive responses to working with patient navigators. But if they aren’t available at your institution, don’t feel bad about bringing in a family member or a friend as an extra set of ears, and as someone that you can talk things over with later.

Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement

Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement from Patient Empowerment Network on Vimeo.

What are some ways that thyroid cancer care is being advanced? Expert Dr. Megan Haymart from the University of Michigan discusses updates in thyroid cancer guidelines, shared decision-making, and actionable patient advice for personalized treatment.

[ACT]IVATION TIP

“…patients should carefully ask the risks and benefits of each of the treatment options, so they can make a pro/con list for themself and really tailor it to what’s a priority to them.”

Related Resources:

Emerging Advancements in Thyroid Cancer Treatment

Addressing Socioeconomic Disparities in Thyroid Cancer Care

Personalized Treatment Approaches in Advanced Thyroid Cancer Management

Transcript:

Lisa Hatfield:

Dr. Haymart, with your involvement in creating thyroid carcinoma guidelines and your research on optimizing cancer care delivery, what recent advancements or changes in thyroid cancer management do you find most promising for improving patient outcomes?

Dr. Megan Haymart:

So I think there are a lot of exciting changes that are coming. But the one that I’m the most excited about with the guidelines is the guidelines are going to emphasize tailored care more and shared decision-making more. And so I think these are key. And so for a lot of thyroid cancer management, there is not one right or wrong treatment option. It depends a little bit on the patient and what their preferences are.

And so for preference sensitive decision-making, there’s going to be a lot more emphasis on including the patient in that decision-making. There’s no right or wrong choice. The patient can think about what concerns them the most and then prioritize things based on that.

So, for example, total thyroidectomy, which means removing all of the thyroid versus lobectomy, which removes half the thyroid. For some patients with low-risk disease, either option is okay. The benefit of doing a lobectomy is there’s less surgical risk, so less risk of voice problems, less risk of low calcium. The disadvantage is that sometimes there’s more follow-up needed, maybe more ultrasounds needed. You don’t know by blood work necessarily that all the cancer’s gone. So you get more information by doing the total thyroidectomy but the total thyroidectomy has more surgical risk.

So, for example, if someone is a singer and they really don’t want their voice to be damaged and they’re not that worried about cancer coming back, lobectomy might be the choice for them. If someone has a lot of anxiety about wanting to know that absolutely everything is gone and the idea that they might need more ultrasounds makes them anxious, maybe total thyroidectomy would be a better option for them.

And so moving forward, I think there’s going to be this emphasis on personalized care, shared decision making and sort of tailoring the care to the patient. And so my activation tip for this question is that patients should carefully ask the risks and benefits of each of the treatment options, so they can make a pro/con list for themself and really tailor it to what’s a priority to them.

Lisa Hatfield:

Okay. Thank you. And one follow-up question I have to that as a cancer patient myself is, whether a patient and their doctor chooses a more or less aggressive treatment with their thyroid cancer, what does the follow-up look like? Are labs and imaging done forever for that patient to make sure there’s not a recurrence or is it just for a certain period of time?

Dr. Megan Haymart:

So this is a great question. About, I don’t know, 10 years ago everybody was getting almost the same treatment, right? So we’ve started to tailor it more and there’s far more people getting lobectomy now than they were 10, 20 years ago. Which is great. The disadvantages, we don’t have as much long-term data on these individuals.

And so it’s a little hard to be conclusive about when is the right time to stop follow-up. The longer we get out, the more data we’ll have on how long we need to follow these patients who had lobectomy, but I think that’s an excellent question. It’s just the fact that there’s been a shift in management and we haven’t had time to catch up to like, how should surveillance or long-term survivorship care change.

Emerging Advancements in Thyroid Cancer Treatment

Emerging Advancements in Thyroid Cancer Treatment from Patient Empowerment Network on Vimeo.

What are the latest thyroid cancer treatment advancements? Expert Dr. Megan Haymart from the University of Michigan shares an overview of treatment updates along with proactive advice about actionable mutations for personalized thyroid cancer treatment.

[ACT]IVATION TIP

“…if you have high-risk advanced disease that’s progressing, I think it’s very important to ask your physician if they’ve done tumor sequencing to see if there’s any actionable mutations, because then you could have more targeted treatment.”

Related Resources:

Addressing Socioeconomic Disparities in Thyroid Cancer Care

Advancing Thyroid Cancer Care: Tailored Treatment and Patient Involvement

Personalized Treatment Approaches in Advanced Thyroid Cancer Management

Transcript:

Lisa Hatfield:

Dr. Haymart, new advancements in thyroid cancer treatment are emerging. What are some promising therapies on the horizon, and how might they benefit patients?

Dr. Megan Haymart:

So there’s a couple of exciting new treatment options that are available. So one is for high-risk patients who have advanced disease. So this will be a minority of all the patients I see. So it’s probably five to 10 percent that have high-risk advanced disease that’s progressing at most, probably closer to 5 percent. For these individuals, we now have targeted treatments where we can do molecular testing of the tumor, and try to identify the mutations and then give treatments that are targeted towards those mutations.

Not everybody needs this. So many of my patients do great with sort of the standard therapy of surgery, maybe surgery and radioactive iodine if they have papillary or follicular thyroid cancer, they had some lymph nodes involved, but there are some where they have distant metastasis, it’s aggressive, it appears to be growing. And so we do have new treatment options and there’s more and more trials and treatment options becoming available every day.

The other exciting thing that’s available now is there’s new treatment options for lymph node metastasis. So most of the time for lymph node metastasis, you’re going to have another surgery. You always want to see the surgeon first, but sometimes there’s patients who’ve had multiple neck surgeries. The surgeon can’t go back in, or it feels like it’s too high risk to go back in.

We now sometimes use percutaneous ethanol ablation. We’re starting to use radio frequency ablation to treat these isolated lymph node mets when surgery is no longer an option. And so I think that it’s exciting because we have opportunities for patients that we didn’t have in the past. And I think it’s just going to continue to improve in regards to use of these new therapies.

Lisa Hatfield:

Okay, thank you. And do you have any activation tips for that question?

Dr. Megan Haymart:

My activation tip for this question is specific to individuals with high-risk advanced disease that’s progressing, And so if you have high-risk advanced disease that’s progressing, I think it’s very important to ask your physician if they’ve done tumor sequencing to see if there’s any actionable mutations, because then you could have more targeted treatment. Some of these targeted treatments work better, some of them have lower side effects, and so it’s really an era of more tailored care, and this is an important question to ask.

Lisa Hatfield:

Dr. Haymart, how do genetic mutations and molecular markers influence treatment decisions in thyroid cancer and what personalized medicine approaches are being developed?

Dr. Megan Haymart:

So for patients with advanced disease, and it’s progressing, so they have distant metastasis, it’s growing. We can now test for mutations in the tumor to see if there’s any actionable mutations that patients can get targeted treatment. And so that wasn’t available in the past and it is now. And I think it’s really changed the way we take care of our advanced thyroid cancer patients. And my activation tip for this question is, if you have advanced progressing thyroid cancer, ask your doctor if your tumor has had sequencing to see if there’s an actionable mutation because there may be a targeted treatment that you’re a candidate for.

Understanding Thyroid Cancer Treatment Options and Follow-Up Care

Understanding Thyroid Cancer Treatment Options and Follow-Up Care from Patient Empowerment Network on Vimeo.

What’s key for thyroid cancer patients to know about treatment options and follow-up care? Expert Dr. Megan Haymart from the University of Michigan shares her expert knowledge about various treatment paths and proactive patient advice to ensure optimal care.

[ACT]IVATION TIP

“…it would be important to ask how many surgeries have you done in the past year? Typically high volume is considered more than 25, very high volume, some of the physicians, some of the surgeons will do 100 a year. So that’s very important to ask this and ask them what is their complication rate? What are the complications that we might see?”

Related Resources:

Thyroid Cancer Explained: Types, Staging, and Patient Communication

Overcoming Thyroid Cancer Care Barriers

Is There a Gender Disparity in Thyroid Cancer?

Transcript:

Lisa Hatfield:

Dr. Haymart, can you explain the typical treatment journey for someone newly diagnosed with thyroid cancer and what can patients expect in terms of surgery, radioactive iodine therapy, and follow-up care?

Dr. Megan Haymart:

So patients typically have a biopsy and that’s how they find out they have thyroid cancer. Afterwards, they’re most often referred to surgery and so when they meet with the surgeon, the surgeon might talk about one, not doing the surgery, so just following it. But we don’t do that as often, but sometimes with small cancers and depending on what else is going on in a patient’s life at the time. Two, they might offer lobectomy. So the thyroid is a butterfly-shaped gland in the neck. So they might talk about taking out half the thyroid, not the whole thyroid. Or they’ll talk about a total thyroidectomy, taking out the whole thyroid. They should talk about the risk and benefits of both of those.

After the surgical pathology is back if someone had a total thyroidectomy for papillary or follicular thyroid cancer, radioactive iodine is a treatment option. And again, it’s not recommended for everybody, but for some patients, the things within the pathology look higher risk. There might be lymph nodes involved or signs of invasion. Radioactive iodine is a treatment option.

And then long-term, most patients are followed with neck ultrasounds, with laboratory work. Sometimes if there’s more suspicion, they may have additional, a suspicion of recurrence, they may have additional imaging, but for the most part, it requires lab work and periodic neck ultrasound during follow-up.

And so when patients are sort of along this pathway, I think a couple of things are important to know. One, sometimes it doesn’t move super fast. So it’s pretty typical, like between diagnosis and meeting with the surgeon, it might be a month, and then surgery might be a month or so after that. Radioactive iodine might be a couple months after that. And so that first six months to a year can be very stressful for a patient. So I think that’s important to know.

And then two, I think it’s important to make sure that when you go along this process, you have physicians that you trust and that you can rely upon. So you can still talk with your PCP who you know quite well. You may now have an endocrinologist that you see, and this might be new for you. You may have a surgeon that you see, and this might be new for you. And so you want to ask them the questions that you have.

And my activation tip would be that you want to make sure that you have high volume and experienced specialists. So, for example for surgery, it would be important to ask how many surgeries have you done in the past year? Typically high volume is considered more than 25, very high volume, some of the physicians, some of the surgeons will do 100 a year. So that’s very important to ask this and ask them what is their complication rate? What are the complications that we might see?

And then similarly for the endocrinologist, you want to ask what proportion of your patient population are thyroid cancer patients? How comfortable are you following thyroid cancer patients long-term? And you may get varying answers. And so I think it’s important just to ask these questions so that you feel comfortable that you have experienced providers taking care of you.

Is There a Gender Disparity in Thyroid Cancer?

July 8, 2024/in Thyroid Cancer, Thyroid Cancer Access & Affordability, Thyroid Cancer Activated, Thyroid Cancer Activated Experts, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Programs, Thyroid Cancer Video AA, Thyroid Cancer Video ND /by Kara Rayburn

Is There a Gender Disparity in Thyroid Cancer? from Patient Empowerment Network on Vimeo.

Is there a thyroid cancer gender disparity? Expert Dr. Megan Haymart from the University of Michigan discusses the incidence rate of thyroid conditions and thyroid cancer in men versus women and proactive patient advice for those who feel dismissed or unsupported.

[ACT]IVATION TIP

“…if patients feel like they’re being dismissed, if they’re anxious, if they’re worried, if they’re stressed, if they feel like their questions aren’t being answered, you can always get a second opinion or see someone else.”

Related Resources:

Thyroid Cancer Explained: Types, Staging, and Patient Communication

Overcoming Thyroid Cancer Care Barriers

Understanding Thyroid Cancer Treatment Options and Follow-Up Care

Transcript:

Lisa Hatfield:

Dr. Haymart, how does the prevalence of thyroid cancer differ between men and women, and what factors contribute to this gender disparity?

Dr. Megan Haymart:

So about 70 to 75 percent of all thyroid cancer cases occur in women. And this is very similar to other endocrine diseases, especially other thyroid conditions. So hypothyroidism, hyperthyroidism, those are also more common in women. And so we think that the reason for this is probably multifactorial. So one, there’s probably something about thyroid conditions in a biologic level that differs between men and women.

We also think that there can be some screening bias, meaning that women are more likely to see doctors. They might be more likely to have neck ultrasounds. Some of these thyroid cancers that are picked up are really small and maybe shouldn’t have been picked up. And so I think it’s probably multifactorial.

Something that my patients sometimes tell me and I totally believe them, and I just want everyone to be aware because it’s a lot of females and it’s also very commonly young females. So thyroid cancer is the most common cancer in individuals aged 15 to 33. The median age of thyroid cancer patients is about 50. Sometimes patients feel that their worry and concern about their cancer is dismissed and so I want them to know that they’re not alone.

You know it’s very stressful especially for younger patients who are at a transition point in their life, related to college, related to starting new jobs, related to starting a family, all their friends are healthy and they get a cancer diagnosis, it can be very stressful and overwhelming. And so if you’re worried, if you’re stressed, that’s normal. Patients shouldn’t feel bad about that. No one should make them feel bad about it.

So even though most patients are going to do great with this cancer, it is still a cancer diagnosis. It does still impact patients’ lives and that word cancer can be very stressful. So I just don’t want patients to feel alone if they feel like they’re being dismissed or people don’t realize how stressful that diagnosis could be.

So my activation tip for this is if patients feel like they’re being dismissed, if they’re anxious, if they’re worried, if they’re stressed, if they feel like their questions aren’t being answered, you can always get a second opinion or see someone else. So that’s one thing. And my other activation tip for this is that if they feel like they’re not getting the answers or the support from their physician, there are other online resources that are available that can also help with worry and stress related to a cancer diagnosis.

Overcoming Thyroid Cancer Care Barriers

Overcoming Thyroid Cancer Care Barriers from Patient Empowerment Network on Vimeo.

What are some thyroid cancer barriers to care and treatment? Expert Dr. Megan Haymart from the University of Michigan discusses obstacles that disadvantaged patients may encounter and proactive patient advice to help ensure their best care.

[ACT]IVATION TIP

“…ask your surgeon, how many operations have you done within the past year? High volume surgeons typically do 25 or more. And so I think that’s really important because you’re going to have a lower risk of complications. And so I would encourage all patients to speak up and to make sure they ask these questions.”

Related Resources:

Thyroid Cancer Explained: Types, Staging, and Patient Communication

Is There a Gender Disparity in Thyroid Cancer?

Understanding Thyroid Cancer Treatment Options and Follow-Up Care

Transcript:

Lisa Hatfield:

Dr. Haymart, what are the current barriers that disadvantaged patient populations face in receiving a timely diagnosis and, even more important, treatment of their thyroid cancer?

Dr. Megan Haymart:

So there are disparities in the care of thyroid cancer patients from diagnosis to treatment and even survivorship. For diagnosis, we know that there are certain groups that are at higher risk for presenting with advanced stage disease, so especially minority populations, Black and Hispanic. We don’t know why that is. We don’t fully know why that is at least, but my activation tip for diagnosis would be that if you feel a lump in your neck that doesn’t go away after a few weeks, especially lower in your neck, talk to your doctor.

We also see disparities in treatment. And I think we know a little bit more about why those occur. So there’s been recent data by Dr. Chen, who works with my group, who found that when patients call to get into the clinic, if they don’t speak English as their primary language, if they speak Spanish or Mandarin, they may have difficulty getting into the clinic for a visit. And so we think there are language barriers that occur.

We also know that there’s differences in treatment based on what doctors patients are seeing. So if patients are seeing low volume surgeons who don’t do a lot of operations, they may not get the best treatment for them, which could lead to downstream consequences, including increased risk of recurrence or complications from the surgery itself.

And so my activation tip for this question is that if English is not your primary language and if you run into obstacles scheduling an appointment, if you have any family members or friends that speak English that you can pull in to help you, I think that’d be important. Hopefully, eventually the system will be better where that’s no longer an obstacle, but for now I think that’s important to know.

And then my other activation tip for this question is, you want to make sure you know who your surgeon is in regards to if they’re a high or low volume surgeon. That’s extremely tricky to know, even for me as a physician. I know thyroid cancer because I do thyroid cancer, but if you asked me about GI cancer, I wouldn’t know. And so you have to ask your surgeon, how many operations have you done within the past year? High volume surgeons typically do 25 or more. And so I think that’s really important because you’re going to have a lower risk of complications. And so I would encourage all patients to speak up and to make sure they ask these questions.

Lisa Hatfield:

Okay, thank you. Would it be appropriate for a patient to ask specifically how many of those surgeries that physician has done every year?

Dr. Megan Haymart:

Yeah, it’s totally appropriate to ask because you can’t find that information on the web. So unless you have a doctor colleague or a friend who knows thyroid well, and knows who those high volume surgeons are, they might be able to identify them. But otherwise, if you’re just referred to your local surgeon, I think it’s very appropriate to ask them, how many surgeries have you done in the past year? What are some of the complications that might happen? How often do you see that in your patient setting? I think those would be very appropriate questions.

Thyroid Cancer Explained: Types, Staging, and Patient Communication

July 8, 2024/in Thyroid Cancer, Thyroid Cancer Activated, Thyroid Cancer Activated Experts, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Programs, Thyroid Cancer Video ND /by Kara Rayburn

Thyroid Cancer Explained: Types, Staging, and Patient Communication from Patient Empowerment Network on Vimeo.

What’s vital for thyroid cancer patients to know about thyroid cancer types, staging, and patient communication? Expert Dr. Megan Haymart from the University of Michigan discusses different thyroid cancer types, how she approaches her patients with information, and proactive patient advice for optimal care.

[ACT]IVATION TIP

“…I recommend that patients know what type of thyroid cancer they have and the characteristics of it, including size and if there’s any high-risk features. And the reason I recommend this is because there’s a lot of information on the web, and sometimes you can be reading about a different type of thyroid cancer than what you had, and that might create a lot of worry and anxiety. And so I think the more you know that’s specific to your type of thyroid cancer, the more helpful it is for you.”

Related Resources:

Overcoming Thyroid Cancer Care Barriers

Is There a Gender Disparity in Thyroid Cancer?

Understanding Thyroid Cancer Treatment Options and Follow-Up Care

Transcript:

Lisa Hatfield:

Dr. Haymart, can you please explain what thyroid cancer is, including its types, staging, and how you typically describe it to your patients and their families to help them understand?

Dr. Megan Haymart:

Yes, so the thyroid is a butterfly-shaped gland in the lower neck, and on half the population thyroid nodules, which are lumps in the thyroid, about 5 percent of those are thyroid cancer, which means the cells are abnormal in those nodules. The most common type of thyroid cancer we see is papillary thyroid cancer. So out of every 10 patients I see, probably eight or nine will have papillary thyroid cancer, but we can also see follicular thyroid cancer and Hurthle cell cancer, in addition to medullary thyroid cancer, and then rarely anaplastic thyroid cancer.

So papillary and follicular thyroid cancer and a little bit of Hurthle cell cancer are treated very similarly. Medullary thyroid cancer comes from a different type of cells and has a little bit of a different treatment. And then anaplastic thyroid cancer, which is very rare, is very aggressive and also requires a little bit different type of treatment.

And so for my patients, what I try to talk about is what type of thyroid cancer they have and then what their pathology showed. So did it have any high-risk features? What was the size? And then we talk about how this affects the stage, and stage is standardly used to predict risk of death. For most of my patients, fortunately, risk of death is very, very low. So we also talk about risk of recurrence, which is the cancer coming back. And again, we use the pathology to help us talk about this in more depth.

And my or this question is I recommend that patients know what type of thyroid cancer they have and the characteristics of it, including size and if there’s any high-risk features. And the reason I recommend this is because there’s a lot of information on the web, and sometimes you can be reading about a different type of thyroid cancer than what you had, and that might create a lot of worry and anxiety. And so I think the more you know that’s specific to your type of thyroid cancer, the more helpful it is for you.

Thyroid Cancer Patient Profile: Beena Patel

May 18, 2023/in Patient Stories, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Blog TC, Thyroid Cancer Blog WN, Thyroid Cancer Blog WPS, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Treatment & Clinical Trials, Thyroid Cancer What's Next, Thyroid Cancer Whole Patient Support, Women Patient Stories /by Kara Rayburn

As Beena Patel shares the story of her thyroid cancer journey and path to becoming an integrative medicine professional personified, it becomes clear that she’s making a positive impact to many patients and to those seeking wellness. In her professional life, she works as an oncology physician assistant, holistic life & health coach, yoga teacher, and energy healer. Beena shares the initial feeling that sparked her passion for patient empowerment, “I felt like I’m meant to do this. And I had even more of a fire in me, like I’m going to help people, and I’m going to help cancer patients feel empowered over their care.”

Beena’s cancer journey began when she was 21 and in Montreal celebrating post-college accomplishments with a group of friends. They were mainly driving to festivities and eating a lot of food. She felt like she must have gained 5 pounds, but found that she had actually lost 5 pounds after she was back home. She was in physician assistant school at the time and told her doctor about her weight loss, which prompted her to check her neck and thyroid. Her doctor said her thyroid felt palpable and decided to do further hormone testing, radiological testing, and an ultrasound. Something abnormal was found in the testing, which was followed up with a biopsy that confirmed diagnosis of thyroid cancer. Beena was shocked with her diagnosis at such a young age and felt unsettled with the timing for it to happen when she had just started physician assistant training.

Traveling back and forth between her doctor’s office and the hospital felt overwhelming for Beena. “It was a lot for a young woman and a woman of color, to see not only how painful it is to go through any type of diagnosis, let alone cancer, and having to feel so alone throughout the process. Also seeing how people do pass you off when you’re a young woman of color, and I would say a woman of any age, but I think women who are younger, trying to navigate life, and figuring out your path. And then you get a diagnosis and you’re like, ‘No one understands me,’ so it was a lot to handle.”

Beena’s thyroid cancer treatment included a total thyroidectomy to remove her entire thyroid gland. Her care team also tested some lymph nodes at that time, but didn’t find anything concerning. “I didn’t get radioactive iodine, but then three years later, I did have a mild recurrence, so they did do radioactive iodine at that time.” Beena is now doing well and takes thyroid replacement therapy to maintain her metabolism and other thyroid-related processes.

Empowering herself has been a vital piece of Beena’s patient journey. She felt like her first doctor on her cancer journey wasn’t really listening to her, so she found a different doctor. “You have to find the right fit. It’s like dating. Don’t settle until you feel like you not only have the scientific background, but the right doctor who has clinical expertise, who you feel has clinical knowledge and compassion, as well as the time to spend with you and to educate you as a patient. Your doctor should make you feel seen, heard, and understood. It’s a relationship that you’re creating with this provider, so it’s very important to find a good fit.” She also feels patient resources like NIH.gov, clinicaltrials.gov, and the Patient Empowerment Network (PEN) website are valuable in the process of patient education and empowerment.

Beena had to start physician assistant school a second time after her cancer became too disruptive, and she felt she became empowered at that time. She went through a difficult breakup about 6 months earlier and was feeling disconnected from her body. Yoga and meditation helped her cope with stress, but she was looking for something deeper. She found a Reiki practitioner in New York City and received a treatment for the first time. “I just felt like I transcended everything that I’d gone through in the last decade. I just felt good and calm and at peace. And so when I felt that, I knew I had to share that with patients, I knew there was something deeper.” After she was at Columbia University Irving Cancer Research Center for a few months, Beena had already started doing patient consultations with integrative medicine, and her patients were very responsive to the consultations.

“Many patients aren’t aware of Reiki, or they don’t know that yoga is available to them, but I started doing consultations to educate them. They were willing to try something new, since we weren’t replacing the medication.” Beena realized that she had a gift with patients as she was able to bring peace when they were stressed or had a panicked look on their face. She also recalls during her cancer journey that a medical fellow actually lied to her about the diagnosis and seemed uncomfortable in telling Beena the actual diagnosis. “Some people don’t know how to be comfortable with emotions, because they weren’t taught emotional intelligence. And so I learned that when I would go into the room with a patient, I would hold it together even when I didn’t know what I was doing.”

Beena would request that someone else accompany her in the room, like another provider who was more experienced. She would maintain her calmness and return to her center, and she attributed that ability to her daily meditation practice. She would tell the patient to take a deep breath, and she could watch their heart rate decreasing in real time. The patients would become calmer. “So even if there was an emergency, I could hold it until the intensive care unit (ICU) or someone from another department came in to check on the patient, and it’s like we have that power to help people just by being emotionally and mentally balanced.” And when Beena went to Memorial Sloan Kettering Cancer Center, they were more supportive of integrative medicine. “Music therapists would come, and they had yoga nidra (yogic or psychic sleep) at nighttime and Reiki. They had a patient population that was more aware and educated about integrative medicine, so they would ask for it.”

Patients would request to do a technique like yoga or breath work before they went for radiation treatment in the hopes that it could eliminate the need for anxiety medication. “Sometimes it would work and other times it wouldn’t. Some would pass out at their radiation treatment. So we adjusted things to a combination of breath work and meditation and decreased the anxiety medication dosage. Patients loved having that ability to manage their care from an empowered standpoint.” Beena would also run the integrative medication combination by the care team to keep them informed about the patient.

Integrative medicine is at Beena’s core of medical values that use a mixture of Western and Eastern medicine techniques. She helps patients understand the energetic root of the issues that are happening in the body. “I do think in the future there could be more Eastern philosophies, I think we could get back to energy healing and understanding root causes, the ancient medicine that was passed on from our ancestors.”

Beena is grateful that she is feeling healthy and for the different ways that she’s able to help patients. As for her other advice for cancer patients, she recommends advocating for yourself for the sake of your health. “Be open to ask for support. It’s your body and your health. And be open to us for support, be open to ask when you don’t understand something, and let us know about any supplements that you take. If you feel like you don’t have a good relationship with your healthcare team, be willing to do empowered research and go to the person who you feel comfortable with and who you feel understands you.”

Navigating Thyroid Cancer: Tips from Someone Who’s Been There

November 30, 2022/in Carly Flumer, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed /by Carly Flumer

So you’ve been diagnosed with the “C” word, specifically thyroid cancer, and now you’re seeing a whole new care team. This usually includes an endocrinologist who specializes in disorders of the endocrine system, including the thyroid. As a patient who has been living with thyroid cancer on and off for the past 5 years, here is a non-exhaustive list of tips about treatment and how to manage, including questions to ask your care team and tips for your appointments as you go along your own cancer journey.

11 Tips for Navigating Thyroid Cancer

Have a good relationship with your endocrinologist, as they will be treating you for life.
Make sure your values, morals, and opinions are respected as part of the treatment process. The cure isn’t the only part of the cancer journey.
Ask about different treatment options (i.e. surgical removal).
Inquire about potential side effects of each treatment and how to mitigate them, especially if you undergo chemotherapy and/or radiation.
Ask for clarity on medical jargon, such as thyroid-specific blood tests.
Bring in a list of questions to each appointment.
If possible, have a caregiver, such as a family member or friend, come with you to each appointment as a second set of eyes and ears.
Join support groups that are available both online and in-person.
Utilize your patient portal, if you have one, for messaging your care team, renewing prescriptions, and viewing lab and ultrasound results.
If you end up having to take synthroid, keep a diary or log of how you feel at each dose to be able to report back to your care team.
Advocate for yourself if something doesn’t feel right.

As a patient in a new and very unique environment with a disease you never thought you would get, knowing how to navigate this beautiful, yet terrifying journey is hard. However, if you stick to your values, ask questions, create a strong relationship with your care team, and advocate for yourself, it’ll make the process a lot smoother.

Carly Flumer

Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer.

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different. And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers. As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions.

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have.

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today.

This program is supported by Blueprint Medicines, and through generous donations from people like you.

Patient Profile: Vanessa Steil

March 9, 2021/in Patient Stories, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed, Women Patient Stories /by PEN Editorial Staff

“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate.

When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and when are all precisely chronicled in her memory. Yet it took her reflecting on her story as a survivor to process just how crucial all of the details were. Now, she’s passionate and committed to helping others, and she has dedicated much of her time—and career— over the past eight years to doing just that.

It all started in March 2013 during a routine visit to the gynecologist. The doctor, who performed a neck check as part of the exam, felt a lump on the right side of Vanessa’s thyroid. “I was taken off guard by the whole thing,” she says. She tried to convince herself that the lump was nothing serious, but she followed the doctor’s advice for further testing, and a month later was diagnosed with papillary thyroid carcinoma: thyroid cancer. She was 26 years old. “My whole world changed with just three words. In an instant, I went from feeling like a normal person to having to absorb all this new medical jargon,” she says.

It was a difficult time for Vanessa. She was young, she didn’t know anyone else her age who had cancer, and she didn’t know anyone with thyroid cancer. While she had support from friends and family, at the end of the day she felt very much alone. As the weeks passed by and her mind raced on, she began to second-guess her diagnosis, question whether she should have surgery, and considered having another biopsy. “I had to work through the emotional aspects of my diagnosis, including coming to grips with the fact that I had thyroid cancer and the fear I felt about the outcome,” she explains. “You have to be in a positive place when you are going to have surgery.” Fortunately, her cancer was not overly aggressive, and she was able to delay the surgery until she felt more prepared.

By June 2013, she was ready for surgery and had a total thyroidectomy that included the removal of six lymph nodes, one of which was positive for cancer. The surgery was successful, and so far, she hasn’t required any radiation therapy, a common follow-up treatment post thyroid cancer. While in 2017 her antithyroglobulin levels, a marker that can be used to monitor a possible cancer recurrence in those with an autoimmune condition, went up and remained that way, she continues to be monitored. Her bloodwork and scans are done twice a year, and once a year she has a neck ultrasound; each time she experiences what survivors call “scanxiety” until she gets an all clear from the results.

When Vanessa was diagnosed, her endocrinologist gave her a key piece of advice that she didn’t completely understand at the time, but it stuck with her, and the meaning soon became clear. He told her, “Don’t turn this diagnosis into a research project.” As someone who is naturally curious and was eager to learn all she could about her disease, as soon as she was diagnosed, Vanessa took to “Dr. Google” looking for information and answers, but she wasn’t always finding helpful information. “While online, I was landing on horror stories,” she says, adding that while it is important to be knowledgeable about your disease, it is imperative to get accurate information and to be careful about choosing which sites or social media outlets to use as resources. “The Internet can be a scary rabbit hole, and it can cause unnecessary worry,” she says. “Finding a reputable site, like Patient Empowerment Network (PEN), that’s done a lot of the legwork for you and has comprehensive resources available is invaluable,” she says. Vanessa especially appreciates that PEN helps prepare patients for doctor visits by providing a list of questions to ask and offers relevant insight to caregivers, and survivors. “I was impressed with the PEN content, because it helps the patient from diagnosis to recovery,” she says. She also recommends sites that offer a sense of community where you can interact with other patients who have had similar experiences. “PEN builds community and empowers you to be your own advocate,” she says. “You have to know your body and speak up for yourself. That’s where the community aspect comes in. As a survivor, I try to provide that sense of community for others.”

After her surgery, Vanessa found a creative outlet that allows her to provide support for others and helped her through her own recovery. She created a lifestyle and wellness blog, Living in Steil (pronounced style), where she shares her personal journey and favorite resources as well as beauty, food, fitness, and health and wellness information. She says she was inspired to start the blog in February 2014, while recovering from surgery and trying to put the pieces of her life back together. “You don’t often process the emotional aspects of cancer until later,” she says. “It’s been cathartic to blog about my experience and have the site resonate with so many other patients and survivors.”

Her work as a blogger has led to many more opportunities to share her story including being asked to participate in a book, Tough: Women who Survived Cancer by Marquina Iliev-Piselli and collaborations with other advocacy groups in the healthcare space. In addition to her blog, Vanessa is a health coach and Board Certified Patient Advocate who also works for a pancreatic cancer foundation where she manages public relations and social media. She credits her diagnosis with helping her find her career niche and a meaningful role that allows her to make a difference in the lives of patients every day.

As far as her cancer is concerned, technically she is in remission, but says she is vigilant about staying on top of her health. “I have never taken my survivor status for granted,” she says. She continues to be her own advocate and has found that sometimes means she needs to find new doctors. If they are not listening to her or are not open to communication, she knows it’s time to move on. “It’s important to find a doctor who takes your concerns to heart,” she says.

Through Vanessa’s own experience with cancer, she’s learned a lot about advocating for herself and others. Vanessa has experienced firsthand what works and what doesn’t, and she is grateful to be able to share her knowledge. “If I can bridge the gap for people with a cancer diagnosis and make it easier for them to get the resources they need, then that is rewarding for me,” she says. “I had a difficult diagnosis, but I learned from my challenges and now I can share that knowledge with others. I can’t think of a better way to pay it forward than that.”

Read more about Vanessa and follow along with her journey at www.livinginsteil.com or on social media at @livinginsteil.

Thyroid Awareness: January and Beyond

February 4, 2021/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND /by Kara Rayburn

This post was originally published by Sharon O’Day on MedicareGuide on January 21, 2021 here.

Most people with thyroid disease don’t even know they have it. More than one in eight Americans will develop a thyroid condition during their lifetime, but up to 60% are unaware of it.¹

That’s because the symptoms — fatigue, depression, sleep disturbances and weight loss or gain, among others — could just as well be signs of other medical conditions and life stages.

That’s what makes Thyroid Awareness Month, which falls in January each year, so important. If both people and doctors think of thyroid problems more often, cases can be diagnosed earlier and the disease can be managed sooner.

What Is Thyroid Disease?

Thyroid disease is a medical condition that keeps your thyroid from producing the right amount of the hormones needed by your body’s systems to function. This small, butterfly-shaped gland at the lower front of your neck affects how well every cell, tissue and organ in your body works.

The cause of thyroid disease is unknown, but it can often be managed with medical attention. But first it has to be diagnosed through blood tests, imaging (scans or ultrasounds) and physical exams.

With hypothyroidism, the gland doesn’t make enough thyroid hormone and you can feel tired, gain weight and feel the cold more intensely.
On the flip side, when the gland produces too much hormone you can develop hyperthyroidism, leaving you feeling tired and nervous. You may also lose weight and find your heartbeat is rapid.

Graves’ disease is a specific form of hyperthyroidism, an autoimmune genetic disorder that affects about 1% of the U.S. population.²

Women are five to eight times more likely than men to be among the estimated 20 million Americans with a thyroid condition.³

Different types of benign (non-cancerous) growths and malignant (cancerous) tumors can develop in the thyroid gland. Thyroid nodules, for example, are common and usually benign; these lumps can be solid or filled with fluid. You should still seek immediate medical attention because, while most growths don’t turn out to be cancer, some do.⁴

What About Thyroid Cancer?

When the cells in the thyroid grow out of control, the disease can become thyroid cancer. In 2017, the latest year for Centers for Disease Control statistics, more than 33,000 women and nearly 12,000 men were diagnosed with thyroid cancer.⁵

Thyroid cancer has more specific symptoms than other forms of thyroid disease: a lump or swelling on the side of the neck, trouble or pain breathing or swallowing and a hoarse voice.⁶

What Are the Trends in Thyroid Cancer?

The yearly number of new thyroid cancer cases in the U.S. has grown steadily, from 18,000 in 1999 to a peak of 49,500 in 2015, with a small drop-off after that.⁷

In 2017, for every 100,000 Americans, 14 new thyroid cancer cases were reported and one person died.⁸

Scientists aren’t sure what causes thyroid cancer. But the risk factors include:⁹

Being female.
Being between the ages of 25 and 65.
Being exposed to radiation as a child.
Having a history of an enlarged thyroid.
Having a family history of thyroid disease.
Having certain genetic conditions, including familial medullary thyroid cancer (FMTC), multiple endocrine neoplasia type 2A syndrome (MEN2A) and multiple endocrine neoplasia type 2B syndrome (MEN2B).

Gender and Race

The chances of a thyroid cancer diagnosis are nearly three times higher for women than for men.¹⁰

But if you’re Black or American Indian/Alaska Native, you have about a 45% lower chance of being diagnosed with thyroid cancer than if you’re white, Asian/Pacific Islander or Hispanic.¹¹

Survival Studies

Three factors influence the five-year survival rate for thyroid cancer patients: gender, age and race.¹²

Survival rates are higher for women than for men: 98% versus 93.6%.
Survival drops as people age, from 99.4% for those under 45 to 86.1% for those over 75.
Survival is slightly lower for Blacks compared with whites and people of other races/ethnicities.

For women, thyroid cancer has the highest five-year survival rate of all cancers. For men, only prostate cancer and testicular cancer have higher survival rates.

Regional Glances

Across all ages, genders, races and ethnicities, the rate of new cancers is higher in the extended New England area and some western and midwest states, including Utah, Wyoming, North Dakota and Kansas.¹³

How You Can Raise Awareness About Thyroid Disease

Thyroid Awareness Month highlights the crucial role the thyroid plays in the ability of major organs to function. It aims for more people to get tested if they have unexplained symptoms like those mentioned above. And it promotes early treatment.

As with any type of cancer, greater awareness leads to earlier detection, which can save lives. A cancer stage is defined by whether cancer cells have been contained within the thyroid or traveled to other parts of the body, which influences your treatment options as well as the odds of recovery.¹⁴

If you want to participate in Thyroid Awareness Month, here are six simple ways to get involved:

Do a thyroid neck check. You’ll need a hand-held mirror and a glass of water. Tip your head back, take a sip of water and swallow. Using the mirror as you swallow, watch the lower front of your neck for any bulges or protrusions. If you see any, talk to your physician right away.

Encourage friends and family to get tested. Although symptoms are pretty general, if a loved one complains of feeling cold, not sleeping well or having trouble swallowing, ask them to do the at-home neck check and suggest they see their doctor.

If you can, donate. Even if thyroid disease hasn’t affected you directly, consider donating to:

- The American Thyroid Association (ATA): The ATA’s purpose is to improve the lives of those living with thyroid disease and cancer through research, awareness and education. Visit this link for donations.
- Thyroid Cancer Survivors’ Association (ThyCa): ThyCa provides education and comfort to all people diagnosed with thyroid cancer and their loved ones. Visit this link for donations.
- Thyroid, Head & Neck Cancer (THANC) Foundation: Apart from being a major fundraiser for thyroid, head and neck cancer research—like finding new treatments and better therapies—THANC focuses on community awareness and education, as well as patient outreach and support initiatives.

Share information online and off. ThyCa offers free materials to increase awareness of thyroid issues. Order some today and help spread the word.

Share Your Thyroid Story. Paloma Health developed a video campaign that invites people to share their thyroid story to help raise awareness for thyroid disease symptoms, risk factors and treatment options. According to the organization, when someone submits a story, they’re automatically entered for a chance to win a thyroid support bundle giveaway.

Use hashtags to raise awareness on social media. By using these designated hashtags from the ATA and ThyCA, your efforts to raise awareness will be multiplied:
- #thyroid #hypothyroidism #thyroidhealing #thyroidproblems #thyroiddisease #thyroidhealth #autoimmunedisease #hormones #hyperthyroidism #hypothyroidism #hashimotos #cancer #thyroidcancer #autoimmune #thyroidweightloss #covid #hashimotosdisease #thyroidwarrior #thyroidawareness #thyroidectomy #hypothyroid

Next Steps

January is Thyroid Awareness Month and September is Thyroid Cancer Awareness Month. But your efforts to raise awareness are needed year-round because most thyroid disease cases go undetected in their early stages.

Check yourself regularly with the swallow test. It only takes a minute or two. And stay vigilant when friends and family mention unexplained symptoms. If the signs fall in general categories such as fatigue, depression, sleep disturbances and weight loss or gain, encourage them to visit their doctor to have their thyroid checked.

Your efforts to promote Thyroid Awareness Month can help reduce the number of Americans who have a thyroid problem but don’t know and don’t get checked before a very treatable issue becomes much more serious.

American Thyroid Association. “General Information/Press Room.” thyroid.org (accessed December 18, 2020).
“General Information/Press Room.”
“General Information/Press Room.”
American Cancer Society. “What Is Thyroid Cancer?” cancer.org (accessed December 18, 2020).
Centers for Disease Control and Prevention. “United States Cancer Statistics: Data Visualizations.” gis.cdc.gov (accessed December 18, 2020).
Centers for Disease Control and Prevention. “Thyroid Cancer.” cdc.gov (accessed December 18, 2020).
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
National Cancer Institute. “Thyroid Cancer Treatment (Adult) (PDQ®)–Patient Version.” cancer.gov (accessed December 18, 2020).
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
“United States Cancer Statistics: Data Visualizations.”
“Trends in Thyroid Cancer Incidence and Mortality in the United States, 1974-2013.”

“Wait, There’s a Good Cancer?”

December 14, 2020/in Carly Flumer, Featured Network Manager, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed /by Carly Flumer

When the Luck of the Draw Leads to the Short End of the Stick

Cancer is one of the most feared diseases. Everyone is affected by it in some way, but no one really imagines getting it themselves. So imagine hearing that you got the “good” cancer, a commonly used term for thyroid cancer. That can’t be right. Cancer is cancer…isn’t it? But who are we, as patients, to question what our doctors tell us? They’re the ones who went to medical school and have years of training. But maybe thyroid cancer isn’t that bad?

That’s what I thought when I was told that my cancer was the “good” one by more than one doctor. In fact, one doctor told me that thyroid cancer was “the cancer to have if you had to get it.” I didn’t have any symptoms at the time, so I took these words, spoken to me by medical professionals, as truth. Unfortunately, I learned that there was no such thing as a “good” cancer once I began treatment.

While thyroid cancer is slow-growing, does have a very good prognosis, and can be easily treatable, no cancer is the same. For example, I had the papillary variant of thyroid cancer, a common diagnosis amongst most thyroid cancer patients. I underwent surgery to remove half of the thyroid with the tumor, but my treatment didn’t end there. It was discovered in the pathology report that I had metastasis that was not shown on the original ultrasound that showed the tumor in my thyroid. As a result, I had to undergo a second surgery for the removal of the remaining half of my thyroid. Additionally, I was told by my surgeon that, because of the metastasis, he didn’t know if cancer could be elsewhere in my body, and I would need to undergo oral radiation therapy. “Wasn’t this the ‘good’ cancer?” I thought over and over.

Furthermore, what doctors don’t explain, at least very well in my case, is what not having a thyroid is going to be like. I wasn’t aware of what a thyroid was nor its functions when I was told that it was harboring a tumor. Nor did I know until I had to be placed on a supplement, or rather a replacement, for my lack of thyroid. I learned quickly that the thyroid essentially interacts with every other system in the body through controlling metabolism, heart rate, temperature, energy level, etc. My body slowly adjusted to this new medication with a prescribed dose that was initially “simply a guess” based on my age, weight, and overall health. From there, my healthcare team and I adjust the dose based on how my body responds. If I think about this, especially as a woman, my body goes through many changes as I age, and I’m sure many of them are affected by a properly-functioning thyroid, which I no longer have. I’m not saying that I’m not eternally grateful for their actually being a supplement I can take to, quite literally, live, on a daily basis. What I am saying is that the stigma and the choice of words and phrases surrounding this cancer, perpetuated by medical professionals needs to stop. At the very least, they need to recognize thyroid cancer as a cancer, a diagnosis that inevitably impacts the life, good or bad, of every patient who has this terrible disease well into survivorship.

If you’re a thyroid cancer patient, whether newly-diagnosed, in treatment, no evidence of disease (NED), or anywhere in between, educate and advocate for yourselves. Find doctors who take the time to understand your wants and needs as an individual human being. Never think that your cancer is “less than,” because it matters.

Carly Flumer

Do You Need to See an Endocrinologist for Your Thyroid Disease?

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND, Thyroid Cancer Resource T, Thyroid Cancer Testing /by Kara Rayburn

This resources was originally published by the Verywell Health here.

In most cases, the diagnosis of a thyroid condition is made by a person’s primary care doctor, who may then refer you to an endocrinologist, a physician who treats hormone problems like thyroid disease and others. But that’s not always the case—or necessary. Sometimes, your general practitioner is comfortable managing your thyroid condition on his own, and this is perfectly sensible for certain thyroid diagnoses.

There are other healthcare practitioners, such as naturopaths and chiropractors, who also treat thyroid patients. While their expertise may be helpful as a complement to your thyroid care, it should not be a substitute for that of a primary care doctor or endocrinologist.

How to Work With Your Thyroid Medical Team

As managing thyroid disease can be challenging and is, in most cases, a lifelong commitment, it’s important to have the right team of professionals helping you along the way.

Thyroid Disease Doctor Discussion Guide

Get our printable guide for your next doctor’s appointment to help you ask the right questions.

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Primary Care Doctors

Your primary care doctor may be able to manage your thyroid disease, especially if you are diagnosed with hypothyroidism. This is because most primary care doctors are comfortable and trained to monitor thyroid stimulating hormone (TSH) levels and adjust thyroid hormone replacement medication accordingly

That said, there are some specific situations that warrant a referral to an endocrinologist.

If you are pregnant or planning pregnancy
A newborn or child with a thyroid condition
Presence of thyroid nodules or an enlarged thyroid gland (goiter)
Any type of hyperthyroidism, including Graves’ disease
Secondary hypothyroidism (if a pituitary problem is causing hypothyroidism)
Thyroid eye disease
Suspected thyroid cancer

Endocrinologists

An endocrinologist is a doctor who completes training in internal medicine (like a primary care physician) and then undergoes more training (usually two to three years) in the field of endocrinology.

Endocrinologists diagnose and treat hormonal imbalances, usually due to various gland conditions, such as:

Thyroid disorders
Diabetes
Osteoporosis and bone health
Adrenal disorders
Pituitary disorders
Menopause issues in women
Testosterone problems in men2

While primary care doctors can manage some endocrine conditions, like “textbook” hypothyroidism and diabetes, other conditions warrant the care of an endocrinologist, like pituitary or adrenal gland problems or hyperthyroidism.

Even if you have “textbook” hypothyroidism, do not be surprised if your primary care doctor refers you to an endocrinologist. This can be for a number of reasons—perhaps you have multiple other medical problems (making your case a complex one), or perhaps your doctor does not have a lot of experience treating patients with such a disorder.

Sometimes, primary care doctors simply want an “extra set of eyes” from an endocrinologist, whether that’s taking a second look at your diagnostic test results and/or modifying your treatment plan—all of this is OK, if not, a sign of good care.

Depending on your diagnosis and treatment plan, your endocrinologist may opt to manage your condition on his own, as in the case of Graves’ disease or monitoring thyroid nodules.

Alternatively, your endocrinologist may work alongside your primary care doctor to manage your condition. For example, your primary care doctor may refer you to an endocrinologist for an initial diagnosis of Hashimoto’s disease. Once your endocrinologist stabilizes your thyroid hormone replacement dose, your primary care doctor may then follow your TSH levels. You may then only see your endocrinologist if a problem arises, or once a year for a check-in.

Other Practitioners

Many thyroid patients look to seek out 360-treatment plan—that is, one that includes the expertise of practitioners of different disciplines and takes a “whole body” approach. Naturopaths and chiropractors are two professionals who are sometimes consulted.

If you consult with these or other practitioners, be sure that you only do so as an adjunct to your care by a primary care doctor or endocrinologist. He or she should also be aware of any treatments recommended by other clinicians.

Naturopathic Doctors

A licensed naturopathic doctor (ND) graduates from a four-year graduate level holistic medical school. Their approach to healthcare tends to be more integrative perhaps than traditional doctors in that NDs believe no part of your body operates in complete isolation from the rest of the system.3

So, for example, an ND may discuss the aspects of how nutrition affects thyroid disorders and make sure that you have a diet plan that works to support your thyroid health. In addition, by ordering labs and imaging tests, an ND may evaluate other hormones such as the sex hormone estrogen and cortisol (the “stress hormone” produced by your adrenals glands).

Complement to Your Thyroid Care

While an integrative approach to your thyroid health is appealing, NDs do not necessarily follow the guidelines recommended by professional societies like the American Thyroid Association (ATA) or the American Association of Clinical Endocrinologists (AACE).

For instance, for the treatment of hypothyroidism, many NDs prescribe desiccated thyroid hormone, which is derived from the dried thyroid glands of pigs or cows and provides both T4 (thyroxine) and triiodothyronine (T3). Alternative names include natural thyroid, thyroid extract, porcine thyroid, pig thyroid; brand names include Nature-throid and Armour Thyroid.

This type of thyroid hormone replacement medication provides a ratio of T4:T3 that is not natural to humans (4:1 instead of 16:1), which tends to produce some degree of hyperthyroidism. That is why most expert bodies (the AACE and ATA, for instance) do not recommend its usage, except for perhaps select patients. Instead, for the vast majority of patients, experts recommend sticking with levothyroxine alone (brand names: Synthroid, Levoxyl, and Tirosint).4

Lastly, some NDs practice botanical medicine, recommending herbs for the care of various medical problems. Taking herbs and supplements can be especially harmful to a person with thyroid disease as they may interfere with your medication and/or the functioning of your thyroid gland.

Chiropractors

According to the American Chiropractic Association, chiropractors are designated as “physician-level providers,” in the vast majority of states. While the doctor of chiropractic (DC) program is similar to the doctor of medicine (MD) program in the first two years, the programs diverge in the second half. During this time, the DC program focuses on diet, nutrition, and spinal manipulation, while the MD program emphasizes the study of pharmacology.5

Complement to Your Thyroid Care

While your chiropractor may have been the one to diagnose your thyroid disease (they can order laboratory tests and imaging studies, like a naturopath), once diagnosed, your chiropractor must refer you to a medical doctor for proper treatment—for instance, thyroid hormone replacement for hypothyroidism and either an anti-thyroid drug, surgery, or radioactive iodine ablation for hyperthyroidism.

Chiropractors can, however, provide supportive thyroid care, such as nutritional guidance or ways to ease musculoskeletal pain associated with the underlying thyroid disease (like carpal tunnel syndrome or joint aches).

Chiropractors are legally prohibited from prescribing thyroid medication, which means that they cannot treat or cure thyroid conditions.

A Word From Verywell

The decision to find a doctor for your thyroid care can be a challenging one, as the relationship is an intensely personal one, and it’s not easy to find the right match, particularly when you may be limited by geography and insurance.

Remain proactive in seeking out the right doctor-patient relationship. And keep a positive mindset, too. When you find that trusting, compassionate partnership, you will just know it.

Tests for Thyroid Cancer

September 2, 2020/in Thyroid Cancer, Thyroid Cancer Newly Diagnosed, Thyroid Cancer Resource ND, Thyroid Cancer Resource T, Thyroid Cancer Testing /by Kara Rayburn

This resources was originally published by the American Cancer Society here.

Thyroid cancer may be diagnosed after a person goes to a doctor because of symptoms, or it might be found during a routine physical exam or other tests. If there is a reason to suspect you might have thyroid cancer, your doctor will use one or more tests to confirm the diagnosis. If cancer is found, other tests might be done to find out more about the cancer.

Medical history and physical exam

If you have any signs or symptoms that suggest you might have thyroid cancer, your health care professional will want to know your complete medical history. You will be asked questions about your possible risk factors, symptoms, and any other health problems or concerns. If someone in your family has had thyroid cancer (especially medullary thyroid cancer) or tumors called pheochromocytomas, it is important to tell your doctor, as you might be at high risk for this disease.

Your doctor will examine you to get more information about possible signs of thyroid cancer and other health problems. During the exam, the doctor will pay special attention to the size and firmness of your thyroid and any enlarged lymph nodes in your neck.

Imaging tests

Imaging tests may be done for a number of reasons:

To help find suspicious areas that might be cancer
To learn how far cancer may have spread
To help determine if treatment is working

People who have or may have thyroid cancer will get one or more of these tests.

Ultrasound

Ultrasound uses sound waves to create images of parts of your body. You are not exposed to radiation during this test.

This test can help determine if a thyroid nodule is solid or filled with fluid. (Solid nodules are more likely to be cancerous.) It can also be used to check the number and size of thyroid nodules as well as help determine if any nearby lymph nodes are enlarged because the thyroid cancer has spread.

For thyroid nodules that are too small to feel, this test can be used to guide a biopsy needle into the nodule to get a sample. Even when a nodule is large enough to feel, most doctors prefer to use ultrasound to guide the needle.

Radioiodine scan

Radioiodine scans can be used to help determine if someone with a lump in the neck might have thyroid cancer. They are also often used in people who have already been diagnosed with differentiated (papillary, follicular, or Hürthle cell) thyroid cancer to help show if it has spread. Because medullary thyroid cancer cells do not absorb iodine, radioiodine scans are not used for this cancer.

For this test, a small amount of radioactive iodine (called I-131) is swallowed (usually as a pill) or injected into a vein. Over time, the iodine is absorbed by the thyroid gland (or thyroid cells anywhere in the body). A special camera is used several hours later to see where the radioactivity is.

For a thyroid scan, the camera is placed in front of your neck to measure the amount of radiation in the gland. Abnormal areas of the thyroid that have less radioactivity than the surrounding tissue are called cold nodules, and areas that take up more radiation are called hot nodules. Hot nodules usually are not cancerous, but cold nodules can be benign or cancerous. Because both benign and cancerous nodules can appear cold, this test by itself can’t diagnose thyroid cancer.

After surgery for thyroid cancer, whole-body radioiodine scans are useful to look for possible spread throughout the body. These scans become even more sensitive if the entire thyroid gland has been removed by surgery because more of the radioactive iodine is picked up by any remaining thyroid cancer cells.

Radioiodine scans work best if patients have high blood levels of thyroid-stimulating hormone (TSH, or thyrotropin). For people whose thyroid has been removed, TSH levels can be increased by stopping thyroid hormone pills for a few weeks before the test. This leads to low thyroid hormone levels (hypothyroidism) and causes the pituitary gland to release more TSH, which in turn stimulates any thyroid cancer cells to take up the radioactive iodine. A downside of this is that it can cause the symptoms of hypothyroidism, including tiredness, depression, weight gain, sleepiness, constipation, muscle aches, and reduced concentration. One way to raise TSH levels without withholding thyroid hormone is to give an injectable form of thyrotropin (Thyrogen) before the scan.

Because any iodine already in the body can affect this test, people are usually told to avoid foods or medicines that contain iodine for a few days before the scan.

Radioactive iodine can also be used to treat differentiated thyroid cancer, but it is given in much higher doses. This type of treatment is described in Radioactive iodine (radioiodine) therapy.

Chest x-ray

If you have been diagnosed with thyroid cancer (especially follicular thyroid cancer), a plain x-ray of your chest may be done to see if cancer has spread to your lungs.

Computed tomography (CT) scan

The CT scan is an x-ray test that makes detailed cross-sectional images of your body. It can help determine the location and size of thyroid cancers and whether they have spread to nearby areas, although ultrasound is usually the test of choice. A CT scan can also be used to look for spread into distant organs such as the lungs.

One problem using CT scans is that the CT contrast dye contains iodine, which interferes with radioiodine scans. For this reason, many doctors prefer MRI scans for differentiated thyroid cancer.

Magnetic resonance imaging (MRI) scan

MRI scans use magnets instead of radiation to create detailed cross-sectional images of your body. MRI can be used to look for cancer in the thyroid, or cancer that has spread to nearby or distant parts of the body. But ultrasound is usually the first choice for looking at the thyroid. MRI can provide very detailed images of soft tissues such as the thyroid gland. MRI scans are also very helpful in looking at the brain and spinal cord.

Positron emission tomography (PET) scan

A PET scan can be very useful if your thyroid cancer is one that doesn’t take up radioactive iodine. In this situation, the PET scan may be able to tell whether the cancer has spread.

Biopsy

The actual diagnosis of thyroid cancer is made with a biopsy, in which cells from the suspicious area are removed and looked at in the lab.

If your doctor thinks a biopsy is needed, the simplest way to find out if a thyroid lump or nodule is cancerous is with a fine needle aspiration (FNA) of the thyroid nodule. This type of biopsy can sometimes be done in your doctor’s office or clinic.

Before the biopsy, local anesthesia (numbing medicine) may be injected into the skin over the nodule, but in most cases an anesthetic is not needed. Your doctor will place a thin, hollow needle directly into the nodule to aspirate (take out) some cells and a few drops of fluid into a syringe. The doctor usually repeats this 2 or 3 more times, taking samples from several areas of the nodule. The biopsy samples are then sent to a lab, where they are looked at to see if the cells look cancerous or benign.

Bleeding at the biopsy site is very rare except in people with bleeding disorders. Be sure to tell your doctor if you have problems with bleeding or are taking medicines that could affect bleeding, such as aspirin or blood thinners.

This test is generally done on all thyroid nodules that are big enough to be felt. This means that they are larger than about 1 centimeter (about 1/2 inch) across. Doctors often use ultrasound to see the thyroid during the biopsy, which helps make sure they are getting samples from the right areas. This is especially helpful for smaller nodules. FNA biopsies can also be used to get samples of swollen lymph nodes in the neck to see if they contain cancer.

Sometimes an FNA biopsy will need to be repeated because the samples didn’t contain enough cells. Most FNA biopsies will show that the thyroid nodule is benign. Rarely, the biopsy may come back as benign even though cancer is present. Cancer is clearly diagnosed in only about 1 of every 20 FNA biopsies.

Sometimes the test results first come back as “suspicious” or “of undetermined significance” if FNA findings don’t show for sure if the nodule is either benign or malignant. If this happens, the doctor may order lab tests on the sample (see below).

If the diagnosis is not clear after an FNA biopsy, you might need a more involved biopsy to get a better sample, particularly if the doctor has reason to think the nodule may be cancer. This might include a core biopsy using a larger needle, a surgical “open” biopsy to remove the nodule, or a lobectomy (removal of half of the thyroid gland). Surgical biopsies and lobectomies are done in an operating room while you are under general anesthesia (in a deep sleep). A lobectomy can also be the main treatment for some early cancers, although for many cancers the rest of the thyroid will need to be removed as well (during an operation called a completion thyroidectomy).

Lab tests of biopsy (or other) samples

In some cases, doctors might use molecular tests to look for specific gene changes in the cancer cells. This might be done for different reasons:

If FNA biopsy results aren’t clear, the doctor might order lab tests on the samples to see if there are changes in the BRAF or RET/PTC genes. Finding one of these changes makes thyroid cancer much more likely.
For some types of thyroid cancer, molecular tests might be done to see if the cancer cells have changes in certain genes (such as the BRAF, RET/PTC, or NTRK genes), which could mean that certain targeted drugs might be helpful in treating the cancer.

These tests can be done on tissue taken during a biopsy or surgery for thyroid cancer. If the biopsy sample is too small and all the molecular tests can’t be done, the testing may also be done on blood that is taken from a vein, just like a regular blood draw.

Blood tests

Blood tests are not used to find thyroid cancer. But they can help show if your thyroid is working normally, which may help the doctor decide what other tests may be needed. They can also be used to monitor certain cancers.

Thyroid-stimulating hormone (TSH)

Tests of blood levels of thyroid-stimulating hormone (TSH or thyrotropin) may be used to check the overall activity of your thyroid gland. Levels of TSH, which is made by the pituitary gland, may be high if the thyroid is not making enough hormones. This information can be used to help choose which imaging tests (such as ultrasound or radioiodine scans) to use to look at a thyroid nodule. The TSH level is usually normal in thyroid cancer.

T3 and T4 (thyroid hormones)

These are the main hormones made by the thyroid gland. Levels of these hormones may also be measured to get a sense of thyroid gland function. The T3 and T4 levels are usually normal in thyroid cancer.

Thyroglobulin

Thyroglobulin is a protein made by the thyroid gland. Measuring the thyroglobulin level in the blood can’t be used to diagnose thyroid cancer, but it can be helpful after treatment. A common way to treat thyroid cancer is to remove most of the thyroid by surgery and then use radioactive iodine to destroy any remaining thyroid cells. These treatments should lead to a very low level of thyroglobulin in the blood within several weeks. If it is not low, this might mean that there are still thyroid cancer cells in the body. If the level rises again after being low, it is a sign that the cancer could be coming back.

Calcitonin

Calcitonin is a hormone that helps control how the body uses calcium. It is made by C cells in the thyroid, the cells that can develop into medullary thyroid cancer (MTC). If MTC is suspected or if you have a family history of the disease, blood tests of calcitonin levels can help look for MTC. This test is also used to look for the possible recurrence of MTC after treatment. Because calcitonin can affect blood calcium levels, these may be checked as well.

Carcinoembryonic antigen (CEA)

People with MTC often have high blood levels of a protein called carcinoembryonic antigen (CEA). Tests for CEA can help monitor this cancer.

Other blood tests

You might have other blood tests as well. For example, if you are scheduled for surgery, tests will be done to check your blood cell counts, to look for bleeding disorders, and to check your liver and kidney function.

Medullary thyroid carcinoma (MTC) can be caused by a genetic syndrome that also causes a tumor called pheochromocytoma. Pheochromocytomas can cause problems during surgery if the patient is under anesthesia (in a deep sleep). This is why patients with MTC who will have surgery are often tested to see if they have a pheochromocytoma as well. This can mean blood tests for epinephrine (adrenaline) and a related hormone called norepinephrine, and/or urine tests for their breakdown products (called metanephrines).

Vocal cord exam (laryngoscopy)

Thyroid tumors can sometimes affect the vocal cords. If you are going to have surgery to treat thyroid cancer, a procedure called a laryngoscopy will probably be done first to see if the vocal cords are moving normally. For this exam, the doctor looks down the throat at the larynx (voice box) with special mirrors or with a laryngoscope, a thin tube with a light and a lens on the end for viewing.

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11 Tips for Navigating Thyroid Cancer

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TRANSCRIPT:

What Is Thyroid Disease?

What About Thyroid Cancer?

What Are the Trends in Thyroid Cancer?

Gender and Race

Survival Studies

Regional Glances

How You Can Raise Awareness About Thyroid Disease

Next Steps

When the Luck of the Draw Leads to the Short End of the Stick

How to Work With Your Thyroid Medical Team

Thyroid Disease Doctor Discussion Guide

Primary Care Doctors

Endocrinologists

Other Practitioners

Naturopathic Doctors

Complement to Your Thyroid Care

Chiropractors

A Word From Verywell

Medical history and physical exam

Imaging tests

Ultrasound

Radioiodine scan

Chest x-ray

Computed tomography (CT) scan

Magnetic resonance imaging (MRI) scan

Positron emission tomography (PET) scan

Biopsy

Lab tests of biopsy (or other) samples

Blood tests

Thyroid-stimulating hormone (TSH)

T3 and T4 (thyroid hormones)

Thyroglobulin

Calcitonin

Carcinoembryonic antigen (CEA)

Other blood tests

Vocal cord exam (laryngoscopy)

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