Some of you have been tracking through every step, some of you are just wondering what weirdo asks for cancer treatment recommendations. So, in an effort to get us all in the same page, here’s a recap:
I have been battling thyroid cancer now since December 2017.
Thyroid cancer is typically a pretty simple diagnosis and treatment leading to full remission. However, my situation has not been so simple.
I have a B-RAF gene mutation that makes it more aggressive and less responsive to treatment.
All original tests led doctors to believe that I had a singular node that needed to be removed in December 2017. When they actually opened me up, they had to do a full thyroidectomy and remove the metastasis in five lymph nodes including one that had become it’s own tumor, growing outside the bounds of its original space. They stopped short of removing all cancerous tissue because some of it was too close to my carotid artery.
Following that, they did a round of I-131 radiation, which for most people kills off any remaining cells. After waiting six months, they did an ultrasound which showed my lymph nodes migrating into the now empty thyroid bed.
At one year, they did another Thyrogen scan which lit up on the right side of my neck, showing there was remaining thyroid tissue which had been resistant to the radiation.
Last week they did a CT scan of my neck which showed likely cancer in two lymph nodes in the area, one on each side my vocal chord nerve if we understood the report correctly.
Between the vocal chord nerve and the carotid, no surgeon wants to tackle further treatment - which means it’s time to start considering other options. I have now seen 13 different doctors, surgeons, specialists and imaging technicians.
We believe it is time to find a cancer hospital who specializes in this kind of thing and who can communicate amongst themselves well enough to make solid decisions on how best to proceed. I am done bouncing around and knowing more about my diagnosis, treatment and prognosis than any of the doctors I see.
We are considering M.D. Anderson, Cancer Treatment Centers of America, and the Mayo Clinic, and need to make a decision pretty soon.
Do any of you happen to have insight or feedback on any of those options, as we make this choice?
Thanks in advance.