I have been truly appalled and infuriated by the recent article in the Huffington Post entitled “The 6 Injustices of Cancer” and many of us in the Thyroid Cancer community are no longer going to “sit down and be quiet” as was stated in the article. We are going to tell the world about our stories and experiences of what it is like to live without a thyroid and that this is NOT the “easy” cancer as has been portrayed by so many. So here is the link to the article from the Huffington post that all readers can understand what has me in such an uproar. Some of her points are valid but #5 has struck a nerve with me and many other thyroid cancer patients.
Sure some thyroid cancers are “treatable” but there are those which are not and some which are incurable. It comes with it a lifetime of continued surveillance and yes a very high rate of recurrence. I had a very aggressive tumor which has required more than just having my thyroid removed and swallowing that little tiny pill every day and I then I am golden. That can happen for some which can be great if you are one of the so called “lucky” ones, but for others myself included, it is far from it. Over the last 4 years I have had to live with the fact that I still have remaining cancer residing and housing in my body, sure it is slow growing, but it is still cancer nonetheless. Let me enlighten you on what it has been like to live without a thyroid and the multitude of challenges I have had to face.
So here is a brief snapshot of my journey thus far:
I was diagnosed in 2011 with Stage 4 Papillary Carcinoma with Follicular Variant. Oh yes, there are four flavors of this cancer: papillary, follicular, medullary, and anaplastic. With papillary, there is such a garden variety with many differing subtypes which include columnar, diffuse sclerosing, follicular variant of papillary, Hürthle cell, and tall cell. When I was diagnosed I was ripped from my family for months, taken away from I job that I loved as I was living overseas at the time and had to be transported back to the United States without my family in order to get proper care. I had a very aggressive tumor that was not encapsulated within the thyroid, but spread to many lymph nodes. I had my total thyroid removed along with a right and left neck dissection, in surgery for over 7 hours with 58 lymph nodes removed and 19 which were positive for cancer. My surgeon had to leave cancer in my body on my nerve that controls my voice. I had to ingest the Radioactive Iodine I-131 in hopes that it would eradicate the remaining cancer. However, it never worked as I am iodine resistant. About nine months after my thyroid was removed, I underwent an unsuccessful 2nd neck dissection to try and remove the remaining cancer on the nerve that controls my voice, but they couldn’t contain it, because it was embedded under very extensive scar tissue. The decision was made to leave the nerve intact and watch with close surveillance having ultrasounds every 6 months, having blood work every 8 weeks in an attempt to get my TSH (that is my thyroid hormone) in line where it needs to be; it has been such a struggle and after four years of trying drug after drug we now have achieved that. During this whole time of surveillance I always wait and wonder each time I have that ultrasound if there is going to be further spread to other areas of my body. I depend on daily thyroid hormones that have required very high doses in order to keep the cancer from spreading further. Those high doses have come with many side effects from my hair falling out, extreme fatigue, memory issues, weight gain, the list goes on….
Now after 4 years my medical teams are still trying to determine the best course of action on how to deal with this remaining metastatic cancer on my laryngeal nerve. Another surgery provides many risks which can include potential damage to my laryngeal nerve resulting with problems of not being able to speak, Radioactive Iodine treatment is out because of my body not being able to absorb the iodine, they could possibly do procedures where they can inject ethanol alcohol or use radio-frequency beams into the nodule on my nerve with the hope that it will kill those remaining cells, but still no guarantee that it will work, and then of course the option of still doing nothing and just playing this continuing waiting game in hopes that it doesn’t grow even further.
In addition, there are other things which I have had to deal with such as extremely high heart rate and palpitations and feeling like my heart is going to leap out of my damn chest which resulted in having to take another medication to keep the heart rate down to a decent level. This was all due to having to be kept so suppressed in order to keep the cancer cells from growing and spreading further. On top of that I have an autoimmune disease called Hashimotos that attacks the thyroid in which I have antibodies that can make it more challenging for my docs to know exactly what my tumor markers are. These antibodies make that test less reliable. Although I no longer have my thyroid it still presents challenges. Moreover, my daughter also has the Hashimotos disease as well and I worry constantly if this so called “good cancer” is going to strike her as well! In addition, through all of these treatments I’ve had to endure it has put our family into near bankruptcy.
We don’t get any benefit of big cancer organizations that helps with research of this cancer which is becoming increasingly prevalent. It all comes from private organizations as there is no help from government entities or anything like the American Cancer Society that funds research in finding a cure for this nasty disease! It comes from cancer patients themselves who do everything they can to raise awareness and funding for research.
I think the real injustice here is when myself and many other thyroid cancer patients are left feeling that these thoughtless and insensitive comments as was stated in this article belittle and diminish our journey, just because we typically don’t endure harsh chemo treatments. However, in very advanced thyroid cases that is what sometimes has to be instituted.
Now that I have had time to cool off, I think instead of lashing out that I use this as a way to educate others and I hope that other thyroid cancer survivors will join me in doing the same in bringing about awareness of what it is truly like to live without a thyroid and I encourage others to get their neck checks. Ensure that your doctors are doing these neck checks; if they are not call them out on it and demand that they do their job. The statistics for 2015 show that 62,450 people will be diagnosed with thyroid cancer in the United States, although it is slightly fewer than the 62,980 in 2014, deaths from thyroid cancer will increase by 3% to 1,950, up from 1,890 in 2014 (Thyroid Cancer Survivors’ Association). I surely don’t want to be one of those death statistics and would not wish this disease on anyone. Simply put CANCER IS CANCER and none of it is good period!