Been a while since being on this forum!
Diagnosed back in Sep 2019, surgery in Nov 2019, ROI in March 2020. Ever since I’ve just been having blood tests and the odd scan. I recently felt awful on the dose I was on so asked for more tests and it seems I was on too low of a dose, so that was changed, but they noticed my Thyroglobulin levels weren’t decreasing as hoped. They did decrease a lot after the ROI, but steadied out around the 6 mark. Because of this I recently had another CT scan and US scan.
After the US they decided to do another biopsy and since then I’ve been terrified it’s not going to be good news. I’m still waiting to hear back off my CT scan but I know I’ll need to wait 2 weeks for the biopsy results.
The waiting game is never fun, but I feel this time round it’s hitting harder than the initial diagnosis. I’m finding it harder to sleep and harder to distract myself throughout the day. I feel my doctors are being very vague with everything at the moment and I don’t want to push for any answers because I know they likely don’t want to give me false hope OR scare me. My family are all hit so hard by other family issues at the moment that we’re all a bit lost and need support. They’re supporting me so much but I think they feel as lost as I do at the moment and don’t know what to say.
What have been other peoples experiences with a second biopsy? Or any tips/suggestions on what I could do to help with the wait?
Hi Barbaral,
Sorry for taking so long to reply! Life has been mental recently but all with good things, much of it taken from your advice in your reply.
Thought i'd drop an update, whatever it was they biopsied came back with recurrent PTC, spread even further up the left side of my neck than previously - so another surgery it was. Then they found a recurrence in the central thyroid bed too! It's like a bad TV soap 
My previous blood levels confused everyone, but now they're better than ever and exactly were we want them to be ... which would be fine ... if they didn't find another nodule on the right hand side of my neck in a post-op ultrasound! Another Biopsy booked in the new year and an appointment to follow - we will see what happens.
It's great reading my original post though as its made me realise how far I have come mentally and how strong I have become. Of course I still feel anxiety around everything, and about a third possible recurrence whether it be now or later on in life, but right now i'm just bored of it and ignore it like an annoying co-worker 
Hello.
My story is similar to yours just my surgery was in April (TT and Central and left neck dissection) and RAI in June.
Now I was reffered to different ENT in another hospital and they done Scan and decided I needed biopsy. After a week they phoned and said they are still waiting for biopsy results but I need CT scan ASAP. So I was suspicious already. And then doctors secretary phoned me today that my telephone appointment with consultant is cancelled as doctor said she feels she cannot give me the full information yet as MDT meeting is needed.
It is very surprising for me. I was told RAI uptake was only in thyroid bed and then 3 months after RAI blood tests showed that thyroglobulin was undetectable. So I am shocked I could have something left.
Will find out on Wednesday.
Take care 
