The story of Tamra Kaufman—Thyroid Cancer WARRIOR!!
This June, I am running in the inaugural Vancouver USA Marathon and Half-Marathon (I am running the half!). I am doing it in support of a cause and organization that is very dear to my heart and my life. The organization is ThyCa: Thyroid Cancer Survivors’ Association, Inc. ThyCa is a nonprofit organization of thyroid cancer survivors, family members, friends, and health care professionals dedicated to the support, education, and communication of thyroid cancer patients. ThyCa also gives grants each year for further thyroid cancer research.
For those of you who don’t know it already, I will share with you my story so you understand how important this is to me and why this organization is so close to my heart. In January 2004, I was diagnosed with Stage 1 Papillary Thyroid Cancer. While the initial diagnosis was a huge shock, I was reassured by both my physicians and the statistics that this was a very treatable, slow-growing, and curable type of cancer. Most people diagnosed at this stage are completely cured with a total thyroidectomy and radioactive iodine treatment. I was told, and definitely believed, that I had won the cancer lottery!!! I underwent my operation and treatment in April through June of 2004. All of my follow-up tests looked great and I believed that I had put a scary situation behind me and was ready to move forward in my life cancer-free!!
In January 2006, at a regular follow-up appointment, my doctor found an enlarged lymph node in my neck and, after further testing, it was determined that I had a recurrence of thyroid cancer in many lymph nodes in my neck. I underwent two additional operations that year to remove lymph nodes from my neck and I had another radioactive iodine treatment. I had some serious complications from the operations that were very difficult. In one operation a spinal nerve was severed leaving me permanently numb on the upper, right portion of my chest. In the other operation, I developed a resistant staph infection from my post-surgical drain and was re-hospitalized for 10 days to treat the infection. I also had a severe allergic reaction to the IV antibiotic that was initially used to treat the infection. Needless to say, I went through a lot that year and was very overwhelmed by my cancer. But, at this point I began to understand that I would never truly be cured of thyroid cancer. It was hard to accept and understand that my treatment would become about ‘managing’ my cancer instead of curing it. This confuses a lot of people, but because thyroid cancer is generally slow-growing, even if microscopic amounts of the cancer remain in lymph nodes, the cancer can be treated with surgery, if necessary, or isolated treatments. But any remaining amount of cancer in my neck after my operations and treatment was virtually undetectable, and other diagnostic testing revealed that there was no cancer anywhere other than in my neck.
In September 2008, at another regular check-up, my doctor found another enlarged lymph node and recommend we treat it with an ethanol ablation procedure instead of another operation. I was happy to be offered an option of treatment that was relatively non-invasive and was hopeful that all of these future nagging lymph nodes could be treated with this method as further operations in my neck were risky and unlikely to ever 'cure' my cancer anyway. I had truly accepted that I would be dealing with this indefinitely and it was alright because my prognosis was still excellent and I really considered it a nuisance in my life that had to be dealt with every few years.
But after my September 2010 regular follow-up, my story changed dramatically. During this follow-up, my doctor and I talked about some enlarged lymph nodes in my neck, and the fact that I hadn't had additional imaging test in awhile, so we decided that I would have a CT scan of my chest just to take a look. When my doctor called me to discuss my results, I was not prepared for what he had to say. He told me that it appeared the cancer had spread to my lungs. The CT scan showed innumerable metastases to the base of both of my lungs. This news has not only changed the last six months of my life, but it has changed my life forever. In the past six months I have been absorbed, both physically and mentally, in treating and learning about advanced, metastatic thyroid cancer. The reality is difficult to understand, impossible to comprehend, and even harder to explain, but my prognosis is really unclear. There are patients who live with lung metastases for decades, but the majority are simply not that lucky. The next few years will reveal how aggressive my lung metastases are. My most recent treatment was a very aggressive radioactive iodine treatment that really wiped me out. But, like most thyroid cancer patients with advanced disease, the treatment was disappointing because over time, my cancer has stopped trapping the radioactive material and therefore this type of treatment has become virtually ineffective for me. My next options are experimental therapies and clinical trials.
All of this brings me to where I am now…asking all of you to help give HOPE to not only me, but also all of the other thyroid cancer patients with advanced disease. Here are the facts:
- According to the National Cancer Institute, as of 2003, thyroid cancer was the fastest growing cancer in women
- Thyroid cancer is one of the few cancers that has increased in incidence rates over recent years
- There are very few options for the treatment of advanced thyroid cancer
- As of 7 years ago there were NO clinical trials or studies for further treatments of advanced differentiated thyroid cancer
- HOWEVER, there is exciting research that is now taking place for targeted treatments for all types of advanced thyroid cancer
- Just THIS MONTH, the FDA approved the first EVER treatment of advanced medullary thyroid cancer, and while it is not for the type of thyroid cancer I have, it is a promising start for all other advanced thyroid cancers
I tell you all of this not to feel sad or sorry for me—but to ask you to donate to ThyCa to give HOPE to those of us with advanced thyroid cancer. Raising money to fund research is not only tax-deductible for you, but it may also help save my life and the lives of other thyroid cancer patients! I have set a large fund raising goal and I hope you will help me get there!!! Thank you!