Life After Thyroid Cancer: Patients Speak
What better way to learn about the different experiences of thyroid cancer than directly from patients who have been diagnosed with this fairly uncommon cancer? I was privileged to hear the thoughts of six women, all thyroid cancer survivors. The women included:
Sarah Barber, who was diagnosed with thyroid cancer in February of 2016, and by October of that year, learned from her doctor that her tumor markers were no longer detectable.
Michelle C., a fortysomething wife, and mother of 3 children who was diagnosed with thyroid cancer in 2012.
Sandy K., who was diagnosed with papillary thyroid cancer in 2011. After her diagnosis, Sandy went back to school and will soon be finishing a program in holistic nutrition.
Lindsay P. (not pictured), a community mental health counselor who was diagnosed with papillary thyroid cancer in 2012.
Patricia R., who was hypothyroid for 15 years before her thyroid cancer was diagnosed by a military doctor.
Amy Somma, who comes from a family where all the women on her mother’s side had thyroid problems, including thyroid cancer. Amy was diagnosed with thyroid cancer less than a year after her younger sister was also diagnosed.
After thyroid surgery
Surgery to remove the thyroid gland is a key first step in almost all thyroid cancer treatment. I asked the women what their experience was like after their thyroid surgeries.
Patricia said the surgery wasn’t as bad as she expected.
"The first few days, however, left me feeling weak, off-balance, and there sure were a lot of pills and blood tests afterward. Surprisingly, I didn't take any pain medicine after leaving the hospital. I should mention that my surgeon was fantastic and the scar I bear is barely noticeable."
Michelle’s recovery was not difficult, but she describes it as “complicated.”
“I was never told how I would feel mentally immediately after surgery. I think I prepared myself for the after effects of surgery, like the incision and swelling, but not for what would happen inside my body and mind. I was often dizzy and light-headed, and extremely exhausted with a foggy brain.”
Amy’s recuperation from thyroid surgery had its challenges.
“I had to listen to my body and not push myself too much. My neck swelled a lot and the more I did the more it swelled. I also had to sleep in a recliner for a couple of months because when I laid flat I felt like I was suffocating. My calcium levels dropped and I’ve been taking supplements ever since.”
On the positive side, however, Amy saw a number of symptoms disappear after surgery.
“For five years, they told me the symptoms I was having — palpitations, anxiety, insomnia, and a pain below my ear — had nothing to do with my thyroid because my test numbers were normal. After I had my thyroid removed, the pain near my ear finally stopped hurting, the heart palpitations and insomnia resolved, and the anxiety calmed down.”
Life on thyroid hormone replacement medication
After thyroid surgery, patients are prescribed a thyroid hormone replacement drug. The process of getting stabilized on the medication — and resolving the symptoms of hypothyroidism after surgery — can be a challenge.
Sandy found that her medications would change many times before she settled into a regimen of Synthroid and Cytomel.
“I go from one extreme to the other very quickly. I have gone from being only on T3 and feeling pretty good, to only on T4 and having many lingering side effects, to trying natural desiccated thyroid and it not having any effect on me, to trying compounded thyroid medication, which also had no effect. For me, adjusting is very difficult.”
Lindsay has also struggled with her thyroid hormone replacement.
“On Synthroid, I had continued fatigue, sleep issues, and brain fog. I approached my endocrinologist to consider alternative thyroid medication and was told: ‘You're healthy. Deal with it,’ as he saw my numbers post-surgery were all ‘in range.’”
After writing a complaint about the doctor and firing him, Lindsay sought help from a primary care doctor who was more helpful and put her on a T4/T3 combination thyroid hormone treatment. This helped resolve symptoms for several years, but then the weight gain, fatigue, and brain fog returned. Now on thyroid drug Tirosint, Lindsay says she continues to struggle.
“I’m 35 years old but I have the energy of a 75-year-old. I am at a loss on how to proceed with thyroid support and replacement. I am at a loss finding a doctor who is willing and able to look at my health history as a whole. Every specialist who diagnoses something ends up discounting the other specialist. I am a smart, active researcher and advocate for myself. I remain desperate to see results.”
Amy has been working with her doctor to manage her thyroid medication for two years.
“I feel like we are getting closer to figuring out what works for me. In the beginning, I had lots of symptoms like muscle and joint pain, hair loss, trouble sleeping, brain fog, weight gain, and fatigue. Now my largest complaints are still weight, fatigue, and forgetfulness. I'm taking Synthroid and a small dose of liothyronine."
Sarah advocated for herself to change to natural desiccated thyroid (NDT), which she has found helpful.
“From the beginning of my journey with this disease, I researched a lot about thyroid hormone replacement. I begged and pleaded to get a prescription for Armour for nearly a month post-op but the endocrinologist was adamant about not giving me a prescription. Only after refusing further treatment, and telling her I was going to order Armour online did she agree to write me a prescription. After my labs came back a month later, my blood work was 100 percent spot on and I've only had one minimal increase in dosage So, being told that NDT doesn't work is a load of bologna! My body's adjustment to my medication was quick and painless. I consider myself one lucky woman, and thank my lucky stars every day!”
I asked the women to describe a key challenge of being a thyroid cancer survivor.
Sandy said that she is thankful to feel quite balanced in general, though she still gains weight very easily and needs to be constantly aware of her diet.
“I am on a suppressed dose, and my endocrinologist would still like to tweak my medications. If you were to look at the bloodwork and TSH only, I would be classified as hyperthyroid, which is why my endocrinologist would like to tweak it. But I can assure you, I am not hyperthyroid and exhibit zero symptoms of hyperthyroidism. This is a constant back and forth with my doctor, as he insists the bloodwork for TSH doesn’t lie, even though my free T3 and my free T4 are within normal limits.”
Amy is frustrated by doctors. She says:
“Doctors seem to rely on the bloodwork numbers and the reference ranges. Yes, my numbers may say one thing, but my body is telling me something else. I’m 50 pounds heavier, and I can barely keep my eyes open some days. My sisters and I compare information from our doctors and find we all get conflicting information.”
Michelle feels like she was not given a clear picture of life after thyroid cancer treatment.
“At first, I was told that synthetic medications would take care of any of the negative effects resulting from no longer having a thyroid. Wrong! My hair thinned quickly, my weight gain was rapid, I was freezing in the earlier part of the day and having night sweats at night, my skin was dry, I had brittle nails, heart palpitations, increasing fatigue, and the list goes on. They also told me that it would take about 6 months to get me at a good therapeutic level of Synthroid. Five years later, I am at the maximum dose of Synthroid and am about to switch to Armour Thyroid.”
Lindsay still has many “what if” questions about her thyroid cancer.
“What if I never had my thyroid removed? What if the approach of doing thyroidectomy after finding such a small papillary cancer is overkill? What if we are too quick to turn to surgery? What if I hadn’t had this surgery, and instead monitored the papillary tumors? Or, what if I had a partial thyroidectomy? I can never get back what I had, so like millions of others, I am left with insufficient treatment. What started as: ‘You will just have to take a pill daily, monitor blood work, and recheck for cancer ... Don't worry, it’s the good cancer,’ has become a full-time job with just as many questions or more as I had when I was diagnosed.”
Diet and fitness
When it comes to diet and fitness, most of the women reported unwanted weight gain and difficulty maintaining or losing weight.
Sarah is frustrated that she's gained weight since the surgery.
“I've gained 63 unholy pounds since February of 2016 and went from a size 8 to 16. Thank goodness I'm 5 foot 9. The weight gain has honestly been the hardest thing for me because I've always been very thin and I have a ton of clothes that I no longer fit into. Even though I eat very healthily, the lack of an actual metabolism is my number one problem.”
Michelle goes to the gym daily to combat her thyroid-related weight gain.
“If I miss even one day at the gym I know that I'm gaining weight. I struggle to put on lean muscle as well. For some people exercise is to lose weight. For me, it's to maintain my weight or slow the weight gain process. I'm still not getting ahead of it. I also want to be able to keep up with my children and set a good lifestyle example, which is challenging when you're chronically fatigued. I often feel guilty for going to the gym because I know that I am exerting valuable energy and depriving my children.”
Sandy has found an approach that has helped her combat the weight challenges.
"I simply can't eat a lot of carbs or I gain weight. When I first had my surgery, I initially went with a paleo diet. While this was healthy, I found because I wasn't looking at the carbs, I still couldn't manage my weight. So now I include very little to no sugar and minimal grains and starches. I eat whole, real, clean protein from excellent sources and a little bit of fruit (not much, mostly berries) and veggies galore! For exercise, I power walk every day and do some work with weights. And I stretch!"
Patricia has successfully lost weight.
“Based on my own research and Mary Shomon’s advice, I discovered that eating a low-carb ketogenic diet combined with intermittent fasting works best for me. I also take selenium, vitamin E, zinc, and vitamin D. I also include daily walks aiming for about 10,000 steps a day. All this has helped to lose over 30 pounds.”
I asked the women what changes they had made that they felt were especially helping their health.
Sandy, training to be a holistic nutritionist, reported on a number of supplements she now regularly takes.
“The adrenals are the frontline on the battlefront! So, I take a natural glandular support from a great source. I alternate brands and sometimes go with just herbals to support my adrenals. I also take a stress B-complex. It’s important for me to take vitamin D with K2.
“I also take a pure clean source of iodine every day. People often ask why do I take iodine when I don’t have a thyroid. I do this for other parts of the body that need iodine and to ensure this remains in balance. I do know iodine can exasperate some thyroid issues but for me, it’s all good and helps all around!
“The last very important supplement I take is a good quality probiotic. Supporting the gut is probably the most important thing. So I take a probiotic plus a digestive enzyme with each meal.”
The “good cancer” issue
I asked these thyroid cancer survivors how the fell about the characterization of thyroid cancer as the “good cancer.”
Sandy said she’s heard the “good cancer” statement many times. According to Sandy:
“I’ve even heard it called ‘cancer light.’ But people don’t understand that the thyroid is such a vital organ in the body and does so much. Losing this organ changes the very mechanics of how your body works. Unless you've been through it, you can't possibly understand how thyroid hormone works down to the cellular level and affects everything you do. So, while other cancers may be more aggressive, if you go into remission, you don't always have the lifelong battle of trying to stay balanced without a vital organ."
Amy is frustrated when people say she has the “good cancer.”
"I definitely am not one to play the victim card. I definitely count my blessings and feel fortunate that there's a high cure rate. However, there are consequences to removing one of the most vital organs in your body. Yes, medicine is able to keep me alive. However, I liken the thyroid to a complex computer system that adjusts based on feedback from the rest of the body. Medicine doesn't adjust to the feedback, it just keeps everything operating at one level no matter what."
Michelle said that family, friends, and people in the medical community all referred at one time or another to her cancer as a "good" cancer.
“Or they said, ‘If you're going to get cancer, this is the best one to get.’ My response varied from ‘Really? Is cancer ever good?’ to ‘Let me remove a vital organ from you and see how it feels; an organ that controls or regulates your mood, your temperature, your heart rate, your metabolism, your energy level, your hair, nails, etc.’ My emotional response varied as well, from anger to humor to sensing others’ complete lack of knowledge and understanding.”
Sarah is pretty clear on how she feels about the “good cancer” line.
“My diagnosis was thankfully not terminal and highly treatable, but I'd be just fine if I never hear those d#$% five words again in my life! No cancer is good cancer. Cancer is cancer. When people (doctors, nurses, friends, family, etc.) would tell me I should be ‘thankful it's the good cancer,’ it really made me want to slap them. It undermines how we feel as thyroid cancer patients — like we don't have the right to be sad or sick because it isn't a ‘real’ cancer. Cancer isn't a competitive game and cancer patients are entitled to their own feelings and experiences.”
Advice to newly diagnosed thyroid cancer patients
I asked these thyroid cancer survivors if they had any advice for those who are newly diagnosed with thyroid cancer. Several of the women echoed the same theme of researching, staying informed, and being your own advocate.
Sandy shared her approach.
“I have kept up with Mary Shomon’s Facebook page, and found it very helpful as well as reading and researching how to feel good again. I am also a student, completing my diploma in holistic nutrition, a field I became very interested in after I went through this. This has taught me so much about how the thyroid works.”
Sarah had this advice:
“Research, research, research! Most endos (endocrinologists) expect you to just know things. Become your own advocate because no one else will.”
Michelle had similar advice:
“Speak to people who have been through it or are going through it. Doctors don't know it all and most do not see things from a patient's point of view. Also, know that this is a forever illness. Surgery and medications will not ‘cure’ you from the aftermath of thyroid cancer. In most cases, your journey is just beginning.”
Finally, Amy had this to say:
“First: You aren’t alone. This is a scary diagnosis and you are going to feel overwhelmed. Give yourself the time to heal. Listen to your body and if something doesn’t feel right, don’t ignore it. You will need to be your own advocate, so gather as much knowledge as you can. And no, you aren’t going crazy!”
Connecting with other thyroid cancer survivors
Sharing your experience, getting advice from those who have been there already, and supporting others can be a constructive part of your healthy life as a thyroid cancer survivor. If you or someone you care about has thyroid cancer, consider developing a thyroid support team, or getting involved in the Thyroid Cancer Survivors’ Association (ThyCa). This group provides in-person and online support groups for different types of thyroid cancer and patients facing various challenges in their treatment. ThyCa also sponsors a helpful annual conference for patients and caregivers.
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