Here is a letter I personally wrote which expresses what many of us with thyroid cancer often feel when told we have the easy cancer! There is no such thing!
An open letter to Cindy Finch
We want to thank you for admitting how insensitive and offensive you were when you published the article “The 6 Injustices of Cancer,” recently published in the Huffington Post. While we also appreciate your invitation for us to send you two paragraphs that sums up what it is like to have thyroid cancer, your very offer underscores why you are so ill-suited to be our voice. So, thank you, but no thanks.
You see, we are the cancer misfits. We are often dismissed by the medical community, by other cancer patients like you, and the big budget cancer organizations who really cannot be bothered with thyroid cancer. We know that this is in large part due to the fact that most people just assume that since thyroid cancer is purportedly “treatable” or even “curable”, it is a walk in the park and we have no right to complain. The Thyroid Cancer Community will no longer sit idly by as we are continually ignored. We too have cancer, and our lives have been changed forever.
So, let me give you some idea what it is like to be one of us. I know this is impossible for you since you actually have a thyroid. When we are diagnosed, most of us are also told that we are so lucky! This is the best kind of cancer to get. After this insulting, dismissive statement, we are then told that once we have our thyroids removed, we will just have to take a little pill for the rest of our lives. Nothing could be further from the truth for the majority of us.
We are given radioactive iodine ablation in liquid or pill form to eradicate any remaining tissue. Unfortunately for us, this very treatment puts us at an increased risk of secondary cancers. Spray and pray, just as you described. First, we have to go into isolation, away from our loved ones during a time when we need them the most. It is no walk in the park, as most of us also have horrific nausea from the treatment and are petrified of throwing up because we are radioactive. After treatment, we then get to deal with salivary duct stones, infections of our parathyroid glands (even removal of these precious glands from recurrent infection), crumbling teeth, and even hair falling out in clumps. This is all from our easy peasy radioactive treatment. And this is only if we are lucky enough where our thyroid cancer is even receptive to the only real treatment available for us. For many with Medullary, Anaplastic, Hurthle Cell Carcinoma and even Papillary and Follicular Thyroid Cancer, they are not responsive to the treatment. These patients are often given other treatments (chemo, external beam radiation) and numerous surgeries in an attempt to cure their sometimes incurable disease. The only diagnostic tools we have available to us don’t always work for these patients either. They are left to wonder if there is still cancer hiding somewhere in their bodies, while praying their often recurrent type of cancer gives them a reprieve. Of course, regardless of the kind of thyroid cancer, we all spend the rest of our lives worrying about whether our “easy cancer” will resurface. There are also numerous risks associated with the surgeries used to get rid of our cancer, from paralyzed vocal cords, missing parathyroid glands (which brings with it other major complications and life-long issues with calcium), nerve damage, etc.
Then the real struggle begins. While some may do well on synthetics, many do not. Others do better on natural desiccated thyroid medicine. Many spend years trying to figure out the right hormone levels, and suffer debilitating fatigue, depression, adrenal fatigue, cardiac issues, aches, pains, hair loss, brain fog, weight gain, inability to control our body temperature, hot flashes, puffy face, edema, muscle weakness, impaired memory, sex hormone imbalance, anemia, slowed heart rate, palpitations, thinning hair, menstrual irregularities, and so on. It’s tough to be hypothyroid and even hyperthyroid for the rest of your life. From my own personal journey, the “one pill a day” has now turned into 40 pills a day, daily injections, hormone creams, and multiple doctor visits to try to achieve and maintain the delicate balance needed for me to have a normal life and address the numerous deficiencies my body has now that I no longer have a thyroid. Every single day is a struggle. Don’t get us wrong, we do have good days, and we celebrate those days with utter gratitude. But we also have days where it takes every ounce of determination we have left just to get out of bed, go to work, be parents to our kids, and actually LIVE our lives, not just survive.
Unfortunately for us, since people like you do not take our cancer seriously, we do not get the benefit of funding, 3-day walks, or big cancer organizations to help fund research of this increasingly prevalent cancer, or better diagnostic tools that are so desperately needed. That is why we have decided to use this opportunity to tell you, and the rest of the world, that we will no longer “sit down and be quiet” about our cancer. Instead, we are going to start telling our stories in order to spread awareness about what living with thyroid cancer is really like, and to encourage people to check their necks. We demand to be treated with the same respect as any other cancer survivor because just like your cancer, it changed our lives, gutted us, and we will live the rest of our lives cognizant of the fact that our cancer can always come back. But unlike you, we will not disrespect other cancer patients in the process, or try to claim that our struggle is somehow more important, or worse in any way. Rather, we plan to unite with EVERY cancer patient because CANCER IS CANCER. We all share this one insidious disease, no matter what shape or form.
Thank you again for your offer, but we have our own voice now.
You can see the letter where it was first published here:
Thank you to Jodi Meltzer for also publishing this response article in the Huffington Post to shed more light on the true injustices of thyroid cancer: http://www.huffingtonpost.com/jodi-meltzer/the-6-injustices-of-thyro_b_6590566.html