Preface to my response and decision to treat: This explains the uniqueness of my case. *I responded an hour ago via email with my decision for the course of action. I will share it at a later date. This is what I slept on last night. For those of you who are not familiar with Thyroid Cancer, you should understand that Thyroglobulin is the tumor marker and one of the primary and preferred methods of detection for recurrence. Thyroglobulin is a protein and once the thyroid gland has been removed, there should be no evidence of this. If so, the thyroid gland is no longer present to be producing it, hence something else - cancer. My Thyroglobulin levels have been nearly undetectable while having active disease on both sides of my neck in 2013 and 2014, and my imaging does not serve my case. Thyroid uptake scans AKA Whole Body Scans (WBS) are preferred based on the uniqueness of a type of cancer that is different than the rest. It is not the GOOD cancer because it does not default to chemo. There is much controversy regarding the management and portrayal of a type of cancer that most people dont know anything about. And the little bit that they do know, I would bet my life on this...that what people do know of thyroid cancer is that it is the good cancer to have and patients are left confused and feeling guilty for being dealt the good cancer because they did not lose their hair or have to go through chemo. We are all dealt hands in life and no cancer is better or worse. The day that thyroid cancer is understood and patients are properly prepared for how their life is going to change is the day that it will no longer be minimized, chalked up to the mental health field and the outcast cancer. The aggressive types, and even my type - the most common, are not good. No cancer is good. Period. I cant go to a plastic surgeon and try on a new thyroid gland for size. It was removed when I was 18 and I cannot ever get another one. I am 34 and just now learning how to live my life without it because I grieved the life I had with a thyroid gland and took ownership for the choices in my life because I am tired of feeling sick and tired of being misunderstood and sick with active cancer for over a decade, despite no evidence of disease on my Whole Body Scans. There is a reason the hair on the back of my neck stood up and I balked at every doctor who told me I was in remission. That feeling, at my core, my gut.... It saved my life. And I would piss off as many doctors again to find the right ones because this is my life and I only have one. The Thyroid Gland: The thyroid is the only organ in the body that can absorb iodine, hence the standard protocol treatment - Radioactive Iodine (RAI). This is why chemo is not effective. RAI is more effective. RAI is administered so that remaining cancer in the body will absorb it and kill it. This is why thyroid cancer patients have to go on a low-iodine diet prior to treatment and isolation...to deplete the body of all iodine to prepare for treatment, and then when the RAI is administered, it is done to trick the cancer and blast it with radioactive iodine to kill it off. Patients are placed in isolation after this is performed. They are not allowed to be near their families, children and pets because they are literally radioactive. People have no idea what a thyroid cancer patient goes through because no one talks about it enough. This is why it is misunderstood and my primary reason for blogging. RAI is effective for those who are not RAI resistant. I am RAI resistant and have already exhausted the lifetime max anyway having had 4 ineffective rounds of RAI from the ages of 18-22. Last year when I arrived to CTCA for evaluation, I received a diagnostic dose of radioactive iodine congruent with a WBS. The uptake means, remaining cancer will absorb the iodine and be visible on the WBS. This is how CTCA determined I was RAI resistant. You should also keep in mind that there are 4 types of Thyroid Cancer, and more often than not, the most common type - Papillary Thyroid Carcinoma -has the highest survival rate in the 90th percentile and in my opinion, the main reason why all 4 types are recognized as the Good cancer. I am not capable of absorbing iodine and I am resistant to the standard protocol treatment for a 95% survival rate type of cancer. My WBS was No Evidence of Disease. During this evaluation in September of 2013, CTCA administered a PET scan to compare it to my WBS. The PET scan was abnormal and showed activity in my neck, left hip bone, chest, and sacrum. I underwent multiple procedures, biopsies and after the Tumor Board debated my case for several weeks, my surgeon decided to perform an exploratory Bilateral Neck Dissection to obtain evidence in order for them to proceed with external beam radiation. That was the debate. They needed evidence to treat. And I didnt get that evidence until almost a year later. CTCA determined RAI resistance. Performed my 5th surgery, suffered a MAJOR infection, and the surgery was BENIGN. I was upset because I knew then that I was sick and I refused to accept the fact that I was in remission. The decision to wait until they had ample proof to treat was the right decision. They were looking out for my best interests based on how aggressive the 27 rounds of external beam radiation I just completed were. 10 months later, at my follow up appointment with my surgeon and PET, we reviewed the results. My thyroglobulin was nearly undetectable and my PET was No Evidence of Disease. In that appointment, on June 30, 2014, I was technically in remission. I requested an ultrasound and biopsy of a node on the upper right side of my neck at the top of my incision because the node I felt internally just didnt feel right. That biopsy saved my life. Had my surgeon not listened to me and not ordered that ultrasound, I would have left that appointment on June 30th in remission with active disease. You all know the rest as I shared it publicly throughout the length of my 6th surgery on July 16th and the radiation that followed. I will post my decision to treat another time. Trust your intuition. Its your guiding light.
Posted on: Thu, 13 Nov 2014 23:56:35 +0000
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