Waiting for nuclear medicine results

[cloudwalker]

Hi everyone i was diagnosed with a multi nodular thyroid last year and after a biopsy i was told it was benign last october but i had a follow up earlier this year and i was sent for another ultrasound to see how things were

I had my appointment brought forward 6 weeks for my results so i felt really scared but it turned out everything was okay nothing had changed and the nodules hadn't grown the consultant said he didn't read my notes and just looked at my scan

He then went through some options he said surgery was out as the risks were high and my symptoms were mild, i could wait and keep an eye on it or i could have a chat with a doctor in nuclear medicine to see if she could shrink the nodules but he wasn't putting me forward for treatment just a chat

So i had my appointment which was a blood test then a nuclear injection and a scan after 20 minutes

then i saw the doctor straight away for the results she was not happy with the result and did another ultrasound herself and it showed the nodules had grown and had no definable outline to get an accurate measurement, one had a cystic area but that was now replaced by solid tissue and the other looked smooth in appearance before but was now rough

She also said it looked suspicious and wasn't acting like thyroid tissue so we asked if she thought it was cancerous and she said she wanted to rule it out, i couldn't quite take it all in i thought everything was fine i even thought about not taking up the nuclear offer

So she sent me for another set of scans to get a better look at what was going on, i had 6 scans in total including a 3d one and a ct i didn't feel good after the injection this time and i had a bad taste in the back of my throat and a rough dry patch, this was all 2 weeks ago and i have had a croaky voice since then

The doctor said to phone her secretary if i didn't hear anything within a week, so i did and i'm on a waiting list for an appointment and to be honest it is stressing me out so much i'm trying to think of it in a bit of a good way that maybe that means it's not urgent and not cancer but it's so hard not knowing

thank you in advance for reading this i just really needed someone to talk to x

[Clutter]

Cloudwalker, the delay may be due to double checking results and scans with colleagues if the diagnosis isn't clear cut. Uncertainty is very worrying and stressful. I hope you won't have to wait much longer.

[cloudwalker in reply to Clutter]

Thank you for your reply clutter i thought the same thing too the doctor i saw isn't a surgeon and from what she says it seems my thyroid will have to come out either way so i did wonder if the results would have to be seen by more people i just hope it doesn't take too long

[Clutter in reply to cloudwalker]

Cloudwalker, My scan and Thy3 cytopathology were reviewed by a multi disciplinary team of 40 surgeons, radiologists, pathologists and endocrinologists from three hospitals who meet twice a month via video conferencing. The recommendation was hemilobectomy to remove the nodule compressing my trachea. The tumour was malignant and the MDT advised completion thyroidectomy and later recommended follow up RAI.

I'm only telling you this to point out why there may be a delay in informing you of results. You can be sure the collective expertise and experience of MDT involvement means there is little doubt as to diagnosis and recommended treatment.

[SilverAvocado]

Cloudwalker, I had my thyroid removed due to thyroid cancer two years ago. A thought I found really helpful while waiting for results was to be really determined that my life wouldn't be ruined by it whatever the results were, just different from the life I expected. For me it was cancer, and my life has been really changed and I've lost a lot, but in other ways I've been very lucky with how my illness has progressed. That idea has carried on being really useful to me all the way through.

It's a strange illness to have, if you know you will likely lose your thyroid, it probably won't matter too much to you if it is malignant or not. The literal cancer itself is quite easily managed, although it will be several months of treatment. Some people recover easily and are back to work within weeks, some have additional complications or health problems, some struggle with the fatigue and getting their replacement dosage settled. There's a good chance you will get maybe 80 percent of your energy back, or you may be lucky or unlucky.

[cloudwalker in reply to SilverAvocado]

Thank you for your reply SilverAvocado your thought is a good one to have.

I also suffer from endometriosis and live my life feeling tired and in pain and that has changed my life a lot too i just worry how i will cope with what maybe to come a cold can knock me sideways these days but hopefully i'll get my appointment soon and take it from there