Tuesday, April 17, 2012
I have thyroid cancer. Doctors call this the good cancer. If you're going to get cancer, it's the one to have. I don't agree with them though.
This blog entry is long, so I apologize in advance. I haven't wanted to talk about it much, but now seems like a good time as I am preparing for the next big step in my treatment.
Back in Sept I saw my primary dr for a high blood pressure & diabetes check up. She saw a large lump on my neck that I didn't even know I had. I use a puff in the shower, therefore don't rub my hands on my neck. In retrospect I should have seen it in the mirror, but it grew so slowly and I had gained a little weight so I thought I had gotten a fat neck. I had an ultrasound in October that showed the mass measured at 4.7 cm. I was sent for a fine needle biopsy right before Thanksgiving, which came back negative. The ENT/surgeon said it had to come out anyways due to its size.
My surgery was Jan 24 to remove the left half and the center isthmus. While under, the removed tissue was sent to the in-hospital lab and they froze & tested a sample of it (called a frozen slice). It was negative, so he closed me up. He said the lymph nodes and everything else in my neck looked great. If it had tested positive he would have removed the other half. A few days later he called me to tell me that the final pathology came back positive. I wasn't expecting that at all. He feels confident that he got the entire tumor in the first surgery but to proceed with treatment I needed to have the other side removed. My surgery was scheduled for 2 weeks later, but then was cancelled because I got sick. It was rescheduled for March 6. I did better with that surgery & recovery than I did with the first one. My oncologist told I am a stage 1. If I was 45+ years old, I would be a stage 3. I was told this right before my 44th birthday, so the age closeness does make me a bit nervous.
I had to wait a while to heal before doing the next step. I had been placed on long acting thyroid hormone while waiting for the second surgery. On March 15 I was switched to a short acting version while my body had to withdraw from the long acting (6 weeks). I've been off the short acting since Thursday and have to go hypothyroid. Last Monday I started a low iodine diet (LID) to also prepare. Thyroid tissue uses iodine, nothing else in the body so now I have to starve any remaining thyroid fragments of iodine for 2 weeks. When my thyroid stimulating hormone (TSH) is >30 I can begin the treatment phase. I go for a blood test on Thurs to see where I'm at. Most people aren't ready in one week, so I'll go back on Monday for another blood test and was told there would be a good possibility I'd be ready then. If I am, they order a radioactive iodine (RAI) pill and I go back a day or two later to take that, then go back a day or two later for a whole body scan. During that scan they are looking at how much thyroid tissue got left behind as well as any spread elsewhere in the body. There are so many important, fragile things in the neck that the surgeon can't remove all of the thyroid and fragments are left behind. Based on scan results, a large does of RAI is ordered and I go back a few days later to take that. Since I am starving the thyroid fragments from iodine, when I take the RAI the fragments will be hungry for iodine and soak it up better than if I hadn't done the diet. I'll be inpatient for 2 days because I'll be radioactive and it's not safe for the kids & pets. After I come home, I'll have to isolate myself in the master bedroom for another 5 days or so.
I'll feel bad while hypo with symptoms such as fatigue, brain fog, sluggishness, forgetfulness, slow reaction time, and I won't be allowed to drive. The RAI will most likely cause extreme nausea from days 2-4, or so. There can be other issues, but they seem to vary by person. A few days to a week later (still have to get exact timeframes) I'll go back for another scan to see how well areas absorbed the big dose. I'll be allowed back on my long acting thyroid hormones 24 hours after I take the RAI. It will take a week or so to come out of the hypo state but can take from 6 months to a year to get the right dose for me.
Unfortunately, this is pretty rare. 95% of thyroid masses are benign. Of the 5% only 3% of those get the kind of thyroid cancer I have. I don't have actual numbers but it is considered a rare disease. My oldest daughter has a rare syndrome, there are less than 500 people in the world with her syndrome. So with 2 rare diseases in this house, one would think I might have a shot at winning a lottery. Nope, not a penny in the Mega Millions, lol!