New guidelines validate push back on thyroid surgery: Patient story update
Five years ago, I wrote a post for the Lown Institute about my decision to push back on surgery after the incidental discovery of a small cancerous nodule on my thyroid. At the time of my diagnosis in 2009, the standard of care for nearly all thyroid cancer cases in the United States was surgery to remove the patient’s entire thyroid gland, which I was unconvinced I needed.
As a healthy person with no previous surgeries, I was reluctant to have anyone cutting into my neck for a tiny, symptomless nodule. I was even more reluctant to lose a necessary gland from my body which would leave me dependent on lifelong prescription medication. After considerable research at a local medical library and through an online forum for thyroid cancer patients, I concluded that my doctor had overestimated the benefits of thyroid removal, given that the type of thyroid cancer I had was known to be very slow-growing, if it grows at all. More important, my doctor had failed to disclose the range of potential negative symptoms commonly experienced by patients forced to rely on synthetic thyroid replacement hormones, such as poor concentration, fatigue, depression, anxiety and weight gain.
Fortunately, I sought a second opinion with a physician specializing in thyroid cancer. When I shared my reservations about the proposed thyroid surgery with her, she agreed to support an “active surveillance” approach using periodic ultrasounds and blood tests to monitor my thyroid. Despite my worries about living with an untreated cancer in my body, I was thrilled to be avoiding surgery and the daily thyroid hormone replacement medication I would have needed to take for the rest of my life.
“It’s been eleven years since I made the highly unconventional decision to decline thyroid removal surgery…I have no regrets.”Julie Martinez
It’s now been almost eleven years since I made the highly unconventional decision to decline thyroid removal surgery and leave the small cancerous nodule in my neck, and I have no regrets. At every check-up since then, the nodule has appeared stable and my thyroid function tests have been normal. I feel well and am happy to have avoided prescription medication every single day for over a decade. After years of hearing from skeptics that I was “crazy” for choosing to live with an untreated cancer, I’m glad to report that since my previous post, there have been a couple of new developments in the thyroid cancer world which validate my decision.
First, after many years of uncertainty and debate within the medical community about the best way to treat patients with thyroid nodules and well-differentiated (less aggressive) thyroid cancers, new guidelines were published in 2015 by the American Thyroid Association (ATA) regarding management of such cases. The guidelines cover numerous contingencies regarding nodule size, presence of suspicious features and various other factors, but the bottom line is that nodules like mine (smaller than 1 cm) are no longer recommended for biopsies. In other words, if I showed up at a doctor’s office today with the same tiny thyroid nodule which was discovered over a decade ago, it most likely wouldn’t be biopsied. Instead, a doctor following the new guidelines would recommend monitoring the nodule for three years and if no growth occurred during that time, the routine imaging follow ups would stop.
“If I showed up at a doctor’s office today with the same tiny thyroid nodule which was discovered over a decade ago, it most likely wouldn’t be biopsied.”Julie Martinez
The second interesting development since my original post is that at least two top-tier cancer centers in the U.S. now are conducting observational studies of “active surveillance” for patients like me with small, low-risk thyroid cancers. At the time of my diagnosis I had to look to Japan to find a published study of active surveillance for thyroid cancer, but in 2017 a new study was written in the U.S.
Dr. Michael Tuttle at Memorial Sloan Kettering in New York City published his findings after following 291 low-risk thyroid cancer patients with “active surveillance” for a median period of 25 months. His results were very promising for active surveillance, with only a small fraction of his study participants experiencing tumor growth of 3 mm or more over the course of the study. The vast majority of his study patients, over 95%, remained on active surveillance at the time his paper was written. On the West Coast, Cedars-Sinai in Los Angeles began a similar clinical trial of active surveillance for low-risk thyroid cancer a few years ago after physicians there also recognized that aggressive treatment of every case of thyroid cancer was likely causing more harm than good.
It’s been validating for me to watch the pendulum swing in the direction of less aggressive treatment for low-risk thyroid cancer. Overtreating patients with thyroid cancer not only subjects them to unnecessary surgery, but also exposes them to the hardships of life without a thyroid gland, including dependence on lifelong medication and often a reduction in overall well-being. It’s good to see the medical community adjusting its standard of care to improve quality-of-life outcomes.
Unfortunately, many patients eligible for active surveillance are so anxious about cancer growth and spread that they refuse to consider it. Their fear is understandable. For decades, Americans have been bombarded with encouragements to be screened for cancer with mammograms, prostate cancer screening tests or lung CT scans because — in theory— “catching cancer early saves lives.” There are many patients who describe themselves as “lucky” because their small, symptomless cancers were “caught early” and treated — presumably saving their lives.
Well, it turns out cancer isn’t that simple. While it’s true that some cancers are best discovered and treated before they have a chance to spread, it’s also true that many others are “indolent” and will never go on to cause symptoms. Attacking all these non-aggressive “cancers” with biopsies, surgeries, radiation and other treatments has led many patients to suffer an array of harms. In addition to the physical and financial tolls, unnecessary treatments often distract physicians from addressing other health issues which are often more consequential to their patients’ well-being.
I’m hopeful that my story provides a helpful counterweight to the years of misleading messaging about the value of rooting out and treating every single “cancer.” While active surveillance may not be the best choice for everyone, my experience leads me to believe it is an option worthy of serious consideration by every eligible patient.