Mar 16, 2012 - 2:40 pm
First some background:
I'm a 26 year old female
Background: Diagnosis of Papillary Thyroid Cancer March 17, 2011
Treatments: Radical Neck Dissection on March 22, 2011. The surgery took 8 hours. They removed my entire thyroid, one of my jugular veins, and 55 lymph nodes ranging from the base of my skull to my breast bone on the left side. Of the 55, +20 came back positive for cancer.
I had my first round of RAI in August of 2011, with 207mci.
Tracer dose of 5 mci RAI in February 2012 for my 6 month follow-up showed (after going hypo and low iodine diet for preparation) showed no uptake.They also ordered an ultrasound on my neck.
During the ultrasound, they saw an 8mm spot in my thyroid bed and biopsied it. It came back positive for Papillary thyroid cancer.
Having received an RAI scan, and knowing that this spot was cancer, naturally my doctors were looking for this spot to light up on the scan. It didn't. They checked twice with two separate scans. According to my doctor, this means that any remaining cancer is no longer reactive to the RAI.
Second surgery, February 2012: the cancer was back further than expected and they had to do a live ultrasound during surgery to find it. It was 8mm wide, but grew backwards about 1 centimeter. It was wrapped around my left laryngeal nerve (that controls the left vocal cord), so that had to be removed. It was also growing into my windpipe, so a portion of my trachea was removed and I was hospitalized for a week with a trach in.
My doctor has advised me to get external beam radiation since my cancer is behaving so aggressively and is no longer RAI avid. He said without XRT (or EBR), the chance of recurrence in my neck within a year is 100%.
I will be beginning radiation towards the end of the month, 5 days a week for 6.5 weeks, and was just wondering if anyone could give me an idea as to what I can expect? I know that I will get a very bad sore throat...
Is there anyone else out there like me who has a "normal" papillary thyroid carcinoma that is behaving aggressively?