Hi Zoe,

Hope you’re ok. Similarly to you, half of my thyroid was taken along with the lump and it was found to be cancerous. Have you been told a plan yet? I thought they would’ve scanned my whole neck again too but they haven’t. I’m waiting on a meeting to tell me what the plan is. Worried they’ll just send me on my way for it just to return in the other half of my thyroid. Are you defo having yours out? Have sent you a friend request. 

Much love, sophie xxx 

Hi Zoe,

Sorry to hear about the cancer - it’s always hard to hear even if you feel like you’re prepared for it. It kinda helps that follicular cancer is fairly easy to treat espeshally relative to other cancers because there’s no chemo. But the word ‘cancer’ still feels pretty scary and it takes some time to process.

Yes, I think it is normal for radiologists to not give feedback. I think they send the images to doctors/consultants to interpret the results. As far as I’m aware it’s standard practice for them not to tell you - it would be awful to tell you it was all fine/wasn’t fine and it be wrong. So I wouldn’t interpret anything from that. I’m not sure what they were looking for on the ultrasound and I’m no doctor but I imagine it could easily just be to see how well the scar tissue is healing or something else less concerning like that.

I had the rest of my thyroid removed too, before the opp it felt far more significant than the first operation because you obviously have no thyroid left after. But it is literally just the same thing again - I was almost disappointed. The recovery time for the second operation should be the same as the first. I thought there would be some sort of lag time before the thyroxine kicks in but there really isn’t. Obviously having two operations fairly close together means you have to look after yourself and not force your recovery but my experience of the two surgeries was very similar.

Only difference was that my parathyroid glands got disturbed in the second operation so I had to take calcium supplements for a bit and get my bloods taken more regularly but even if this happens it’s very very rarely permenant. A tip if you do have to take calcium after the second opp - ask for the tablets rather than the drink, they taste way nicer.

I also had radioiodine a few months after the second operation - are you having radioiodine?

Its good to hear from you as I haven’t really spoken to anyone else who’s had follicular thyroid cancer - so it’s cool to hear from someone who’s experiencing the same thing. 

All the best for your ultrasound results :) 

Hi,

I had half of my Thyroid removed (left side) on the 7th Feb due to a 2.8cm lump. On the 14th Feb (yes Valentines Day) I received the shattering news is was Follicular cancer. I am due to have the rest removed on the 19th Mar. I'm glad to hear your second op went ok and wasn't any more of an ordeal than the first.

I'm really struggling with the timescales, I just want to get on with treatment, I've been having chest/shoulder pains etc which I'm hoping are anxiety pains but all things are going through my mind about it possible spreading. I'm clearly older than you so I don't know if that goes against me...

It's hard to cope with the not knowing, I'm trying to keep upbeat and positive (and busy), I have no idea if it's just local to my Thyroid, I feel like a ticking time bomb! 

I think I will probably be having radioiodine treatment after, I was wondering why yours was a few months after rather than weeks, is that normal?

Hi Zoe,

I had a 2.5cm lump removed along with left side of my thyroid. Turned out to be papillary thyroid cancer. My bloods were ok before and after op (op was in October 2018). They preserved my parathyroid glands. Doing well since. Didn't need the radioiodine treatment thankfully. Having a scan on right side on July 1st and getting results of it on July 18th so think it's normal to do scan 1 day and get results a separate day. 

Any other questions give me a shout. Take a while to process the enormity if it all!!

Hazel. Xo

Hi, 

I was told today my FNA of my thyroid nodule has come back as follicular neoplasia and I am getting it and my left side of thyroid removed in 2 weeks time.  Consultant has said the chance of it being cancer are still low but I cant help worrying, especially as its 4 weeks at least til I will know for sure.

Lorna x

Lots of love and best wishes to you 

I'm not sure about your diagnosis but can say my husband was diagnosed with papillary and follicular thyroid cancer in October he had a total thyroidectomy and neck  dissection which although rough for a few weeks he is recovering very well from .

he had RI as well and we are always told there are lots of treatment options with a good prognosis . I hope you get answers soon, the wondering causes more worry than the plan . Take care