Hello!
Sorry, am new to all this as have sort of been avoiding the entire topic. October 2022 I had a TT, and then in January 2023 had RAI. I presented in September 2022 with very fast growing lump (went from 10mm to 120mm in 8 weeks)
Originally they were just going to remove half thyroid to remove this lump, as it was so large that it was compressing windpipe and I was at threat of collapse. Because I also had pain on other side I asked for TT, and when full thyroid was removed they found multiple small tumours. Large tumour was labelled as FT-UMP (follicular tumour of unknown malignant potential), the painful lump on right was labelled as NIFTP, then 3 small tumours found in thyroid and lymph node which were diagnosed as PTC.
Because there were so many tumours presenting weirdly I was offered RAI, which I completed.
Now I have this weird position where everything happened so quickly that I haven't really processed what it means for me. I feel like I shouldn't take up space in cancer conversations because compared to other cancers mine really wasnt severe, and the treatment minimally invasive, so I feel like I don't have a right to be especially upset or scared or have a "cancer experience" when it was all Stage 1.
But I also have questions that I didn't think to ask at the time, and now I'm not sure who to speak to about them. The FT-UMP grew so quickly that I don't completely understand how it could be considered benign (especially as it was about 2 days away from completely collapsing my neck and killing me by the time we operated if it continued to grow, which is also a weird thing to think about). I also don't know whether I am at higher risk of other cancers, or if there are things that I should be looking out for. I did have a Gamma Scan after my RAI which came up as clear, however the Oncologist was wrong about my Levothyroxine dosage and said that could mean he calculated it incorrectly, so it may be that the Gamma Scan needs repeating? But I haven't been contacted about that. It is especially stressful as I have 4 different lymph nodes in my neck (and 1 large one behind the collarbone) that have been consistently swollen since the first tumour appeared but they haven't been biopsied, or scanned, or addressed.
I don't know whether to contact the Oncologist, or my actual ENT surgeon (who was much more on the ball about the whole thing) or if I am even ALLOWED to have questions about my diagnosis since it was already 7 months ago?
Also, I'm a 28 year old man so I keep facing doctors mostly just being confused about how I developed a thyroid cancer (or several?) at my age, which isn't necessarily reassuring! Sorry for the long rambling post, I don't think I realised that the entire cancer thing has actually been quite scary because I've just been avoiding it for so long.
