Thyroid Cancer Survivorship: A Physician's Own Experience

This transcript has been edited for clarity.

Kaniksha Desai, MD: Welcome to the Thyroid Stimulating Podcast, where we delve into the complexities of thyroid health and its impact on our lives. This podcast was created in partnership with the American Thyroid Association (ATA) to discuss up-to-date diagnosis and management of a wide array of thyroid diseases.

In our first episode, we had the opportunity to meet with Dr Bianco to discuss the benefits of using combination therapy, T4 and T3, for the treatment of hypothyroidism, a condition that affects so many individuals, and particularly women.

In today's episode, we will be shining a light on thyroid cancer survivorship. Thyroid cancer is the most common endocrine malignancy, and it's estimated that over 43,000 new cases of thyroid cancer will be diagnosed this year in the US. Thankfully, overall, differentiated thyroid cancer has an excellent prognosis with a 5-year survival rate over 98%. Most patients are successfully treated, leading to a large and steadily increasing number of thyroid cancer survivors.

We have a very special guest joining us today, Dr Anupam Kotwal. Dr Kotwal is not only a highly respected physician-scientist and an endocrinologist who trained at the Mayo Clinic, but also a thyroid cancer survivor. He joins us from the University of Nebraska Medical Center where he is currently an assistant professor of endocrinology, and his medical practice focuses on the diagnosis and treatment of patients with thyroid cancer.

Dr Kotwal was recently diagnosed with thyroid cancer. He brings a unique perspective to our conversation, combining his medical expertise in thyroid cancer with firsthand experience of being a cancer survivor. Most of us, as physicians, hope to never be in the role of being our own patients, but for Dr Kotwal, this is a reality.

Thank you, Dr Kotwal, for joining me today to talk about your personal journey from being the doctor to being the patient.

Anupam Kotwal, MD: Thank you for that introduction. It's a pleasure to join here and give some points about my journey so far from the standpoint of a doctor and now as a patient as well.

Desai: Thyroid cancer sometimes can present with no symptoms at all. Can you share with us how you were diagnosed?

Kotwal: Some people can feel a lump or some discomfort in the neck. If it's small, many patients may not actually feel any symptoms. I had not really felt a lump or anything. I'd had an exam done, and I didn't really feel much at that time, at least.

It was mid- to end of February. We were using this ultrasound probe on our own necks to see how the pictures looked . That's when I found suspicious looking lymph nodes there. The first thought I had was denial and that this is probably not concerning, but then I very quickly realized that this, of course, is something suspicious.

That's how I found this. One of my colleagues, who now takes care of my thyroid cancer, she did a biopsy on the same day. We had a result quickly after that.

Desai: Thank you for sharing that. What did it feel like to be diagnosed with thyroid cancer?

Kotwal: I think there are positives and negatives. A positive is that, of course, we know about the disease, its presentation, and also its long-term outcome. Once I had the diagnosis of papillary or a differentiated thyroid cancer, I was relieved that it wasn't the more aggressive kind.

It had spread to the lymph nodes in the neck. Fortunately, it hadn't spread anywhere else. That was helpful. I talk to patients about good outcomes if it's treated and diagnosed well. We see advanced cases and we see rare situations where the 1% or 2% patients are also being seen. My mind kept gravitating toward, Well, what if I'm one of those 1% or 2% that will have more spread.

I was fortunate to have the support of my family and colleagues. I work at a center that takes care of thyroid cancer in a multidisciplinary manner, so I had all that support where I could step out of the doctor's shoes and into the patient's shoes. Of course, they involved me in each part of the decision-making. I'm sure it was tough for them, too, having to deal with me.

Desai: How did you manage your work and personal life while you were going through your treatments of the surgery and the radioactive iodine treatment?

Kotwal: I did take some time off. I had very supportive colleagues who took care of my patients. With thyroid cancer surgery, I didn't have any major side effects. The recovery was fairly quick in returning to more sedentary work.

I was concerned about possible shoulder weakness, a rare side effect. I do biopsies, so I need to use my hands. I also like to be active. Fortunately, it wasn't an issue, and I had good strength. I hope anyone going through this has the ability to take some time off.

I started getting bored at home. I remember doing a scheduled research meeting with our group. They were all like, "You're insane. Why are you doing this?" I don't know, I was bored. I needed to think about something else. I think it's a balance.

Desai: I'm glad you were surrounded by very supportive colleagues. What was it like being treated by your colleagues?

Kotwal: It worked out really well. I had shared multiple patients with the surgeon who did my surgery, including complicated patients requiring their second or third surgeries. I trusted his surgical expertise.

The endocrine oncologist who takes care of me now, Dr Whitney Goldner, is the director of our thyroid group. We worked together, and I trust her. We discussed that our relationship as doctor and patient would be as separate as possible from our professional relationship. I call this the confluence or coming together of my clinical research and personal trajectory.

Desai: What are some of the other challenges that you have faced as being a doctor with thyroid cancer?

Kotwal: Managing our clinical duties. We all have patients and if you have to change the schedule or take time off suddenly, there's always an issue. Luckily, again, I had colleagues who take care of thyroid cancer patients. They were able to see my patients.

We feel we want some objectivity in caring for patients. With this experience, of course, I have objectivity, but there are times where I've maybe seen a patient with slightly more aggressive or advanced thyroid cancer, but then in the back of my mind, I'm like: This could happen to me down the line. It's maybe decreased my objectivity in certain ways. On the other hand, I'm trying to use it in a positive manner, and it's increased the empathy that I have for the patients.

One of the other challenges is that sometimes, patients have seen the story or they see my scar, especially early on when it was a little bit more visible. Sometimes, the conversation goes on a tangent because they want to know my story. I think most of the times, it may help the patient knowing that this can happen to anyone. Those are some of the challenges that I've used as opportunities in my work.

Desai: You mentioned that sometimes, you share with your patients your diagnosis. Do you routinely share your diagnosis, or do you wait for them to initiate? How do you handle those conversations?

Kotwal: We try to put ourselves in the patient's shoes. We try to think of all the scenarios and where they are in their life, age, family, and all those things. It's very tough to do that, but we try to do our best. Again, everybody is different. Someone else's perception may be different than mine. I usually don't actively share unless someone asks. If they do, then I tell them, "Well, I kind of have or am going through this." Especially if asked the question of what I would do, I do tell them about my journey.

Desai: You talked a little bit about how your knowledge of thyroid cancer helped you cope. Do you think that sharing your journey helped you as well as has been helpful for the community?

Kotwal: From a patient standpoint, I took some time. I think I took about 9 or 10 months and waited for my follow-up to make sure I had a good response from the treatments, my tumor markers were not detectable, and the ultrasound didn't show any residual cancer. I waited for that. You don't want to jinx things.

I then was approached by people at the university asking if wanted to share. I thought it would be useful for patients or community members who may have a family member with thyroid cancer or thyroid issues. That was the main reason behind sharing the story. If I'm able to help or decrease the anxiety for one patient, I think that would be a win for me.

Desai: Is it really as bad as everybody makes it sound out to be?

Kotwal: If you like eating seafood and dairy, and you like salt, and you like all the savory stuff, it's tough. Luckily, Indian food, such as basmati rice and lentils, actually has almost no iodine. I ate a decent amount of Indian food. Fruits, vegetables, and less dairy. I think it's tough, especially if people don't cook much or if they don't have support.

I used the resources from ATA, especially for the post-op care. I use it for the post-op care and incision care, where sometimes it's fine, but other times, people have a large amount of scarring, muscle spasm, and things like that. Because of my lateral neck incision, I did have some muscle spasms.

Desai: I'm glad you had a relatively nonbumpy experience in your post-op care, your surgery, and your follow-up with the radioactive iodine. Did you learn anything new about thyroid cancer that you didn't know before?

Kotwal: One thing I would say it's very important to have neck exams. I was a young, healthy person. I did have hypothyroidism from before, from Hashimoto's. If someone asks me, I say "Please make sure you've had a good neck exam. Usually, if it's concerning, you'll feel it, and that should then trigger an ultrasound evaluation.

My thyroid cancer actually skipped the central neck lymph nodes and was a very, very tiny focus in the thyroid itself of a couple of millimeters. It went to a lateral left neck lymph node, which was more than a couple of centimeters. We call this skip lymph node metastasis, which are not very common.

My research looks at immune markers in thyroid cancer. It's led to a little bit of a question, which we're trying to explore now, especially in those with these lymph node spreads that skip the central part and just go to the side or lateral. What are the reasons there? Is there an association with autoimmunity? Is it protective or not? I did learn that this skip lymph node metastasis is not very common but can happen.

When you're getting evaluated for even a thyroid mass, lump, or concern, you should have a comprehensive neck ultrasound, which includes scanning of lymph nodes. Make sure the gel goop goes all the way to your ear or your upper neck and that they looked there.

The third thing would be mild side effects after the radioiodine. I do have more mouth dryness. It's not the worst thing. I can taste fine. I have normal saliva for the most part. I got a dental exam and everything's fine. I do need to drink more fluids and carry a water bottle with me. Some people have taste alteration. I had that for about 6 months and then it got better. People can have salivary gland swelling.

These are considered minor side effects. The benefit would still be more than the risk. If you have a high-risk disease or disease that's spread to the lymph nodes, it would still be beneficial to treat that with radioiodine. I do give patients ideas on how to decrease the severity or maybe prevent some of this.

I've been paying more attention to what we consider mild and minor. Again, we took care of the patient's cancer. We've destroyed whatever little cancer is there with radioiodine. That's all great, but the quality of life may not be the same after even a good treatment. That's why there have been studies showing that many thyroid cancer patients or survivors actually have bad quality of life.

Desai: Is there any particular advice you have for patients diagnosed with thyroid cancer?

Kotwal: If people want to connect with other survivors or others who are going through the same process, the ThyCa is a good place to start. Ask questions to decrease the worry. Look at the society resources for patients. ATA has many good resources. The website provides input on specialized centers which may be helpful for patients. Trust the process but verify where you're going or who's taking care of you because it takes a little bit of time from diagnosis to surgery.

Afterward, too, with surveillance, I have patients ask me, "Can you say I'm completely free of cancer?" We can say with a very high probability, like 95% or 98%. It can take a few years to say that. For patients, you get worried. Anytime my follow-up visit is coming up, I try to keep the anxiety until a couple of days before the visit.

From the patient standpoint, my advice would be to know that this is a process. The main treatment in most cases initially is surgery. Make sure to ask questions. Make sure you're going to a surgeon who has expertise in it, especially if the cancer has spread out of the thyroid gland and the lymph nodes, because that's slightly more extensive surgery. Everyone with the surgery will become hypothyroid.

Understand that it's not one and done. Most patients will need at least some years of follow-up at a minimum, and some may need even longer, especially if they had high-risk cancer.

Desai: It is a journey. What are your hopes of new things on the horizon for the treatment of thyroid cancer, especially things to improve quality of life or treatments for more advanced thyroid cancers?

Kotwal: As we know, surgery and/or in addition radioiodine would be the treatment needed for most patients. A proportion, 10% or 20% can progress and some may not respond to the radioiodine despite it. That's when we use the targeted therapies. I think there's a large amount of research going on in that area, especially to improve the time for response to these therapies.

I think there are many exciting things happening in the field of thyroid cancer, both when it gets advanced and on the other side. There are newer surgical techniques for tiny thyroid cancers on the horizon. I am very excited about all the research advances that are coming up.

There is a big impetus on quality of life. How can we best address this? Which kind of hypothyroidism treatment is the best? What are the targets we should keep?

Desai: A big thank you to Dr Kotwal for sharing your courageous story and providing a fascinating glimpse into when thyroid physicians themselves need complex medical thyroid care. Your personal journey exemplifies the resilience and determination required to overcome this disease. It offers hope and inspiration to others in similar situations, and it serves as a powerful reminder of the importance of thyroid cancer survivorship.

Kotwal: You're most welcome. It was my pleasure.

Desai: Thank you again to our listeners for joining us today on our second episode of the Thyroid Stimulating Podcast and stay tuned for further episodes.

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