Thyroid cancer diagnosis after thyroid removal.

Hello bbosh

I don't have lots of answers, because I am also new to this all. What did resonate is that I have also been offered to go on the ION trial. My cancer was indicated in the FNA and I had a thyroidectomy six weeks ago. They were happy that there was no vascular invasion and they got the two tumours out with margins around them. My biggest one was 2.5 cm which is on the smaller side of average - so 1.8cm is relatively small. I had a few lymph nodes removed which they tested, but no CT scan. I think that makes them confident that it hasn't spread further. I think being on the trial will ensure very good follow up.

I can't relate to the neck pain you mention - perhaps run that by your GP?

I have also been told not to worry about the levels and ranges in blood tests for now because it is early days. Apparently our own thyroid hormone can stay in the body for up to 8 weeks after the thyroidectomy, so they'll want to know that that has gone. So it sounds like it will be a while until everything is settled, and that they have a level that works. To be honest, the only thing that keeps me sane is to process the information I need at the time, and not to google.

After the shock of discovering the cancer, I do wonder if I will ever not worry whether any twinge or odd thing or anything isn't cancer. But the risks after curative surgery are low and my oncologist has said that I am no more likely to get another cancer because of this one.

Good luck with the oncology visit next week, and remember that we are being offered the trial because things are looking good and that's fantastic news!

Have a great weekend.

Thanks for your reply. I think I will feel better once I have seen the oncologist and had the chance to ask some questions.

its weird because when I found out it was cancer I was just relieved it had been removed and was totally chilled about it. But this week I have done full turn about and I am worrying about everything, which is really annoying! 

The ION trial does mean that I’m in a very good position, you are right, we will get very close monitoring which can only be positive. I will consent, have bloods taken and be randomised at my appointment on Thursday.

hope you are doing well and it’s nice to be able to come here and chat things through. 

Keep me posted on your trial journey it should be interesting.

Hey there bosh, 

Sure, ask all the questions you like and we'll help where we can. So, let's tackle these ones first....

1. Follicular cancer very rarely spreads to the lymph nodes, it's Papillary that normally heads to the lymph nodes. However, the level of thyroglobulin - TG - will tell the Dr's if there's too many thyroid cells in your body. So if your TG is too high, then they know that they need to go looking for cells. Also, the Dr will have looked at the local lymph nodes as they were removing your thyroid. Infected ones look and feel different, so if there was anything suspicious, they'd have removed them while they were in there.

2. Sounds like your internal stitches are dissolving and things are relaxing inside. You may also have been holding your neck and head in a funny way to relieve pain or discomfort, we all do it subconsciously, but this has now given you a bit of a crick. Try gently massaging it, maybe even use some deep heat to help things relax. If it doesn't improve in a few days, then head to the Dr to get it checked out.

3. As someone who has had thyroid cancer, the normal ranges don't apply. What you need to ask your consultant is what number they are aiming to suppress your TSH to. For most people, for the first year, they are looking to suppress the TSH to 0.1. As TSH goes down, T4 goes up. So ideally they want your TSH suppressed, without letting your T4 get too high over 20 ish. While your TG is hopefully as close to 0 as possible.

4. Yes, but only because my WBS after my RAI showed mine had spread. And without the RAI, my TG would have told them that there was something somewhere that they needed to find. So honestly, don't worry about spread. If they thought there was any chance of spread, they'd not have put you on the ION trial. They'd have sent you for RAI right off.

5. No. It's perfectly natural to worry. 

If there's anything else, then please do shout! 

Lass

Xx

Thank you Lass, that’s all really helpful.

i hadn’t thought about internal stitches and I was opened up twice in the space of 3 days so would make sense. 

I need to do some reading up on the T3, T4, TG as I haven’t got my head round it all yet, have you come across any sites that explain all this in a dumb prove way? 

I read you profile and it sounds like you have been through a hell of a lot, so I very much appreciate you taking the time to answer my questions.Best wishes x

Heya, 

Not a problem at all! 

There are lots of sites that explain it all slightly differently, and some of them can be quite confusing, while others are American and not relevant to us, so extra confusing. Lol

What is it you'd like to know and I'll see if I can explain it to you. 

Lass

Xx