The Hard Truth.
Originally published on http://jillgurfinkel.com/2018/01/the-hard-truth/
It’s been a while since I have written. Much of the last year has been devoted to dealing with one autoimmune issue after another, with my life being completely sidelined as a result. The last five years since my diagnosis with thyroid cancer have been nothing short of a roller coaster- and compared to many, I have had it easy. But there is that word again… “easy.” I know, I know. You have heard me say over and over again how thyroid cancer is not the “good cancer” and how we need to dispel that myth. This time, however, I am going to say what everyone else in the thyroid community is really thinking regardless of how harsh it may sound.
The medical and scientific community are failing us. Hell, they are ignoring us, and people are dying as a result. Yes, I know that thyroid cancer typically has a great survival rate. And yes, I have seen the articles claiming there is an overdiagnosis of thyroid cancer, which really should be discussing the overtreatment of some forms of thyroid cancer- not thyroid cancer as a whole. There are several different forms of this awful disease. For most patients, the main form of treatment is Radioactive Iodine Ablation (RAI), which is used to destroy any remnant thyroid cells after the thyroid has been removed. However, not only does RAI leave the patient at an increased risk for secondary cancers and a host of other ailments, but RAI does not work for all patients! There are many patients who have RAI-resistant forms of thyroid cancer, and it is these patients who deserve infinitely more from the medical and scientific community.
If you are a patient with RAI-resistant cancer, you are faced with the fact that there is no cure for your form of thyroid cancer and only so many tools at your doctor’s disposal to give you any sort of fighting chance. The fact is that chemotherapy and other drugs typically used to treat other cancers, can only do so much for thyroid cancer as they were never intended to be used in this capacity. While there is some hope of shrinking an existing tumor(s) or helping to prevent the progression of advanced disease, these same treatments come at a heavy price in the way of side effects and/or they eventually stop working. A well-respected advocate and beautiful writer in the thyroid community, Barry Hollander, recently lost his battle to RAI-Resistant/BRAF+ Papillary thyroid cancer. Before he passed, he left an incredible legacy by sharing his journey with the world. When Barry received a prognosis of 2-4 years after his RAI-resistant thyroid cancer spread to his lungs, Barry learned the hard truth that there is no cure for this type of the “good cancer” and his hopes for treatment were limited at best.
"Again, let’s be clear, there’s no cure, there’s no chemo or radiation treatment that will make this thing go completely away. I may have the best docs in the world at the best hospital in the world, but they’re limited by the tools in the toolbox. Thyroid cancer isn’t among the sexy cancers; it’s not getting tens of millions of research dollars. My docs are stuck with the medical equivalent of a small set of screwdrivers, a worn-out hammer, and a rusty pair of vice grips. Even the meds we have were originally designed for other cancers... We’re the orphan of cancers, the ones stuck wearing hand-me-down drugs." Hollander, B. (October 14, 2016). That “M” Word- Thyroid Cancer Metastasized To Lungs, Retrieved from: https://thyroidnation.com/m-word-thyroid-cancer-metastasized-lungs/(Emphasis added).
Do yourself a favor and read the full post by Barry cited above. I have also included other links to Barry’s work below because I could never do justice to everything Barry endured. But you better believe I am going to do whatever I can to make sure his journey is well known, because he deserves that much and people need to know the truth that thyroid cancer can be just as lethal as other forms of cancer.
Even still, knowing that thyroid cancer rates continue to climb at alarming rates, and that the mortality rates are increasing, there are still no new treatments or cures for those patients whom conventional treatments fail to work. While there are no shortage of articles discussing overtreatment or overdiagnosis of some thyroid cancers, where the hell are the articles crying out for funding for the patients whom no treatment provides a cure? As you may have sensed, I am livid right now. I am furious that NIH and the American Thyroid Association seem to be satisfied with the treatment options currently available to patients like Barry even though THEY ARE NOT WORKING. Sure, they may buy these patients some time, but that is not good enough! These patients deserve a cure and a fighting chance- just like any other cancer patient!
So, I would like to ask the American Cancer Association, the American Thyroid Association, and NIH- what in the world are you doing to help these patients? How much are you donating from your coffers to help these patients find a cure?Of course, I already know the answer: Whatever you are doing, it’s not nearly enough. So, what are you waiting for? How many patients must die before thyroid cancer patients are worth fighting for?
To read more of Barry Hollander’s incredible writing, please click below and share to help raise awareness for thyroid cancer:
If you or a loved one has been diagnosed with thyroid cancer, the Thyroid Survivor Network has an excellent private support group to help you through every step of your journey.