A patient’s story: After research, a push back on thyroid surgery
By Julie Martinez
For the Lown Institute
Editor’s Note: Read Julie’s 2020 update on what has happened since she declined thyroid surgery!
I am a well-educated, athletic, well-insured, basically healthy 52-year-old woman. Up until seven years ago, I had outstanding health and avoided doctors’ offices and screening tests because I felt well and thought there was little to gain by seeing a doctor.
During the spring of 2008, I gradually starting feeling sick, suffering rapid unexplained weight loss and numerous other symptoms indicating a serious systemic problem. I was pulled into a long journey of blood tests, x-rays, scans and referrals to specialists, but the doctors could not figure out what was wrong.
By nature, I am a researcher-type, so I poured myself into figuring out what was causing my symptoms. Eventually, I learned about a board-certified gastroenterologist from Baylor University who offers testing for food sensitivities through mailed test kits. When I received the results, I learned that I had sensitivities to gluten and dairy, an autoimmune reaction to gluten, and severe mal-absorption, presumably due to gluten-induced damage to my GI tract. I went on a very strict gluten-free, dairy-free diet, and within two weeks, was feeling significant improvement. My local doctors dismissed this diagnosis, because the test isn’t accepted as standard medical protocol, but clinically the diet worked extremely well, so of course I stuck with it (and stopped going to doctors).
During the course of the all the scanning, two small nodules were discovered on my thyroid. Thyroid nodules are very common, mine were very small, and my thyroid was functioning normally, so the nodules appeared to be “incidental findings” unrelated to my symptoms. As a precaution, I was told to have them re-checked in six to nine months. When I returned about eight months later for the recommended follow-up, the nodules were exactly the same size, but the endocrinologist suggested a biopsy anyway. I agreed (a decision I wouldn’t make so hastily today).
Two days later, I received a phone call telling me “you have cancer.” I was shocked. The doctor strongly recommended a total thyroidectomy (removal of my entire thyroid gland). I was told that without a thyroid, I would be dependent on thyroid hormone replacement medication for the rest of my life, but that it was “one little pill a day, no big deal.” I couldn’t imagine myself undergoing surgery (I’d never had surgery in my life) and making myself dependent on lifelong medication (I’ve never taken a prescription for more than two weeks), for something that might not even turn out to be cancer (the original pathology report was only “suspicious” for cancer).
It seemed crazy, because in the previous year I felt terrible, and the doctors could find nothing wrong, and now I was feeling much better, and I was being pushed to agree to treatment with irreversible, life-changing consequences.
I poured myself into researching suspicious thyroid nodules. I identified a second pathologist (one of the top thyroid pathologists in the country) to review my slides, but unfortunately she reported that my nodule was in fact cancerous (not merely suspicious). I had to face the reality that I really did have cancer.
Meanwhile, I had learned quite a bit about thyroid cancer, and was feeling like my doctors were not giving me a full picture of my options or their potential outcomes. I learned as much as I could about both the natural course of my disease (if left untreated), and about the consequences of the recommended treatment. I used a medical library to find published information, and the internet to collect focus-group-type information from real patients living without their thyroid glands.
I concluded that the benefits of surgery likely were being over-estimated by my doctor. Thyroid cancer is generally very slow-growing (if it grows at all), highly survivable and very common. Over 10% of people in the U.S. (30% in Europe) who die of something else are discovered, through autopsies, to have had thyroid cancer, without knowing it. In fact, my doctor even told me that it was very possible that if I hadn’t had the biopsy, I might live to be 100 and never know the cancer was there. He said he believed the surgery was absolutely necessary, “just in case”.
More important, I discovered that my doctor had greatly under-estimated the potential for negative consequences from the proposed surgery. Through my own research, I learned that many patients fail to regain their pre-surgery sense of wellness after thyroidectomies, and suffer ongoing depression, anxiety, fatigue, difficulty concentrating, memory problems and other serious complaints due to poorly regulated hormone levels. Most of these patients reported that if their blood work looked good their symptoms were routinely dismissed by their doctors, and they suffered. Some patients even had to drop out of school, or lost their jobs, due to their inability to concentrate. Others reported being on multiple medications to alleviate their symptoms, particularly the anxiety and depression that they experienced after their thyroids were removed. One patient even reported wanting to order a t-shirt which read, “All I want for Christmas is my thyroid back”.
Fortunately, I know my own values well. I wanted to avoid surgery and I wanted to avoid becoming dependent on lifelong medication (if I could), particularly for something which has such a strong impact on one’s sense of well-being. I learned that patients in Japan with small thyroid cancers (like mine) were being “treated” successfully with observation, which to me sounded like a much better approach than surgery. Fortunately, I sought a second opinion on my case from an endocrinologist at Stanford who specializes in thyroid cancer, and she was (and continues to be) willing to support a watchful waiting approach (although she was clear that her first choice for me was the surgery).
Over the past five and half years, my thyroid has been monitored with ultrasound and blood tests (which measure both function and a marker which might indicate spread) and everything has remained stable. I take no medications (other than vitamins), and feel well. I estimate that I would have spent at least $5,000 out-of-pocket (probably significantly more) in co-payments and co-insurance over the past five plus years if I had agreed to the treatment my doctor had pushed. For numerous reasons, I am very happy that I decided to keep my thyroid.
It’s been an interesting journey to be “the patient who chose to live with untreated cancer”. I am currently finishing up a memoir about my ordeal in the hope that sharing my story will help bring awareness to many of the shortcomings of our current medical system, particularly the harms that can be caused by over-treatment.