Indifferent: I have no fears. There is no protocol for my case. Ive received a response from my team regarding my case management and the decision is my call. Im grateful theyre allowing me to decide. CTCA will remain my primary, but when a patient receives confirmation Weve studied, reviewed your case, records, PETs, tumor markers and history of recurrence, we are not sure of the BEST way to treat you. And it relies on my intuition. Predicting 4 recurrences with ZERO evidence of disease on my imaging and undetectable tumor markers with ACTIVE disease on both sides of my neck is Russian Roulette. Im a realist and I do see the glass half full. This is a lot to process and my surgeon and radiation oncologist will remain on my case. My gut reaction aside from wanting to puke is another set of eyes and clinical trial at MD Anderson, Houston. If I decline the PET and accept a CT on my neck, I disregard monitoring potential metastatic disease. If I accept the PET, I incur further medical debt, expose myself to further radiation exposure and the potential of secondary cancers. My case is beyond atypical, which Im aware of, but this is still a lot to process. This is dancing in the rain at its finest. There was no guarantee external beam radiation would be effective. Im ok with that. As a patient who is managing her case through the guidance of her physicians, I have difficulty accepting the fact that imaging does not serve my case due to my resistance to radioactive iodine, which is the standard protocol treatment for Papillary Thyroid Carcinoma. My other concern is determining the success of the hell I just went through undergoing 27 rounds of external beam radiation. The only successful management my case is pointing to a lymph node I can feel and ask my surgeon to order an ultrasound guided FNA (biopsy) and continue to trust what I feel Im okay but I have some things to process regarding my case management. This is a prime example of why this is not the good cancer as it is minimized, portrayed and perceived on all levels. All we have is today and the ball will remain in my court. I need to decide, based on my gut, how I want to be managed. And its a lot. So I will enjoy my dinner date tonight and sleep on this for now. Medicine is not perfect. Its process of elimination. Cancer does what it wants and shows itself when it wants. I do feel extremely confident with the treatment I am currently recovering from and grateful for the honesty of my team. There are no guarantees in life, and certainly no guarantees with regard to cancer. My intuition is my guiding light and my answer. I will decide whats best for me when I have clarity. This is how I process. And Im confident with the decisions Ive made to date, and confident in trusting what I feel, regardless of medical evidence. So for now, CT scan and MD Anderson are on the horizon. Thank you for your continued support. To the others fighting the good cancer through the nature of my case; my best piece of advice is to trust what you feel, advocate, educate yourself, find doctors who respect you enough to let you decide whats best for your life, and most significantly; just because you cant see it doesnt mean its not there. Sincerely, A 5 time Thyroid Cancer Survivor who will forever continue fighting the GOOD fight and live in the moment, bc today is truly all we have.
Posted on: Thu, 13 Nov 2014 02:01:42 +0000
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