So I asked him some questions... I always have questions! My TSH was drawn on Friday and he said that turned out to be 0.34 suppressed which is right where I should be (0.3-0.5) so my daily thyroid hormone dosage is good. I asked him if the lymph nodes appeared to be fine and he said we won't know for sure until after my scans but they aren't concerning at the moment. Then I asked him if I would have a nuclear medicine or radiation oncology doctor do my RAI and he said it would be a nuc med Dr and that I would have a consult with him a few days before my scans/RAI. I told him i've been reading the research and it says I have an increased risk of breast cancer, couple that with my family history, I wanted to know if it would be a good idea to get scheduled for a baseline mammogram - he said yes, that would be a good idea... I asked him a few more questions and I believe I have a good estimate of a timeline...
- Pre Surgery - Call my PCP to get a Mammo ordered and performed (yay fun)
- September 1st 8:30am - completion thyroidectomy performed, stop all thyroid meds
- September 2nd - go home still off all thyroid meds, this time with no thyroid at all
- September 2-October 2 (approx) - be off thyroid hormones to go hypo, currently my TSH is at 0.34 (which is almost hyperthyroid for normal people) and I need it to get to 50.00 (10 times more hypothyroid than the almost hypothyroid normal people). This takes approximately 4-6 weeks and you feel like total h-e-l-l as all your body functions slow to a crawl.
- September 8th - post-surgery appointment & stitches removed
- September 20th - start the LID, hopefully this only lasts 2 weeks but this again depends on my TSH levels.
- October 4ish - Hopefully levels will be high enough to meet with the Nuc Med doctor and schedule my tracer WBS for a couple days later (low dose of RAI)
- October 6ish - tracer dose WBS to check for thyroid cells still in the body - this will be the first time we will be able to find out if the cancer spread to lymph nodes or elsewhere
- October 8ish - get 100-150 mCi dose of I-131 (radioactive iodine) - unsure at this point if I will have to stay overnight to protect the safety of the public from my radioactive cuteness. No seriously, I will be emitting gamma rays sorta like X-Rays at not so safe levels.
- October 8-15ish - the isolation period. I can't be anywhere near children or pregnant people and have to be at least 3-6ft away from all others and only for very short periods of time. I have to suck on lemon drops for the 1st 24-48hrs to keep the radiation from burning my salivary glands. I have to pee every hour for the first 24-48hrs to prevent it collecting in my kidneys and I have to flush twice after each use. If I vomit they have to call the hazmat team!
- October 10ish - get a post-RAI WBS. This one should show what the 1st WBS did, except the very high dose of RAI will make it much more sensitive in showing any possible mets.
- October 11ish - I can start taking my thyroid meds again - YAY!
- November 22ish - check TSH levels. Goal: 0.3-0.5. Continue checking levels every 4-6 weeks if not in the goal range. It can take months after going so hypo to get your levels back to the goal range.
So that's my life for the next couple months in a nutshell - any questions?