Hurthle Cell Carcinoma Diagnosis

Hey there Durham,

Sorry to hear about your partner, but I'm glad you've found us.

With the remaining thyroid removal, it should be exactly the same as the first half removal. The only thing that might happen is calcium issues, so watch for tingling hands and/or feet.

With the RAI, there's 2 weeks of a low iodine diet - LID - before the RAI. All this means is he can't eat fish, dairy, or egg yolks - I presume you're both in the UK? So if he's an omnivore, then it should be pretty easy to do. 

After that, he'll need to be in hospital for roughly 3 or 4 nights, or possibly less if he's given a low dose. So he'll need to drink 2 litres of liquid a day to flush the excess iodine through. It will be handy to send him in with some ibuprofen/paracetemol if he's ok taking them, as some folks get a headache with it.

Other than that, it's pretty much life as normal.

If you'd like anymore info, or have any questions, then please do shout and we'll do our best to answer them if we can.

Lass

Xx

Thank you for your prompt reply Lass.

Today’s appointment was just a blur. We didn’t really get a chance to ask many questions. I didn’t think to ask if it had spread or what the prognosis is for this type of cancer. His consultants are meeting next week to decide whether they’ll need to take neck glands as well. 

Am I correct in thinking he won’t have the RAI whilst already in hospital having the remaining thyroid removed? Will that be done in the weeks that follow? x 

Heya,

It's no problem at all.

At this point in time, they won't know if it has spread or not. After the second half is removed, they'll have an idea. But it will only be after the RAI and the blood tests that they'll know for sure. There's a hormone called thyroglobulin in your blood that can easily be measured with a simple blood test. This hormone tells you how much thyroid tissue is active in your body. So after your partner has had a TT and then RAI, that number should be right down almost to 0.

The prognosis for thyroid cancer is good as it has a 99% survival rate. Hurthle Cell is a slightly more aggressive form of thyroid cancer, which is why he's having a TT and RAI. Where someone with the same lump but the papillary version might be on a watch and wait treatment plan. That def doesn't mean you should worry more, or that things are worse for him though - just to be clear. Because RAI is an excellent treatment for thyroid cancer, so there's no reason to think things will be different for him.

I presume the neck glands are the lymph nodes? Has he had a CT scan or an MRI? If not, they may just wait and see what they think when they are in there. Sometimes they take a few just to check there's no spread to the lymph nodes. If that's the case, then the op will take longer to recover from and is called a neck dissection. Depending on how many they take out and from where, will alter his recovery. If they take some out, then he'll need some physio exercises as well as massage techniques to help get the movement a suppleness back into his neck. So it's roughly a 6 month healing process, but again will vary depending on how many nodes they take from where.

You are correct, RAI and TT are done at different times. You're possibly looking at the TT, then 2 or 3 months later the RAI. Because he has to be in self care isolation, they usually like the patients to be healed up a bit and able to look after themselves. Plus, the lead lined rooms are quite busy and booked up. So takes some time to get to the front of the queue and get the tablet ordered in. 

Hope that helps.

Lass

Xx

Good Morning Durham05,

I was diagnosed with the same type of Thyroid Cancer beginning of May last year after Ultrasound, FNA and Hemi thyroidectomy and I know it is scary to hear the C word and difficult to take anything in so ask away on this forum.  It has helped me a great deal too.

Time frames vary, depending where in the country you are but I for example had the other half of my thyroid removed together with a neck dissection during which they removed 29 lymph nodes, in early August. For me, the recovery from this operation was no worse than the recovery from my first.

 A week or so later I was told that there was no cancer present in any of the bits they took out. This was followed by a low dose course of RAI and scan mid October. The low dose meant that I only had to stay in hospital for a few hours and was released home with some contact restrictions. End of November I was told that the scan had shown no spread to anywhere else in my body and I am now being monitored. To start off with every 3 months (first appointment coming up end of Feb) and this will then move quickly to 6 month/ annual check ups.

The worst thing about the whole treatments is definitely the waiting and not knowing but you and your husband will get through this. Anything you would like to ask, just ask.

Thinking of you.

Swichee x

Just a quick question Swichee.

Was your iodine dose you had before the scan a treatment dose or a scanning dose? Or do you know what type of iodine was used, as that would say which it was?

Just, if you were only kept in for a few hours that sounds like it was just a scan rather than a treatment?

Thanks in advance,

Lass

Xx

Thanks for sharing your experience Swichee and for your reply Lass. 

I assume the glands the consultant mentioned are the lymph nodes. If he needs that then he’ll be referred to another hospital for the surgery.

He had two weeks off work following the last operation. Is it likely to be similar recovery time again? How much time off will he need to recover from the RAI? He is due to start a new job in two weeks and I’m terrified they’ll withdraw the job offer when they realise he’ll need time off so soon after starting the role. 

Hey there Durham,

Time off work after the next op very much depends on how many lymph nodes they take from where, and what he does for work. If it's just a completion, then it is usually just a week or two. If he has calcium issues, he may need a third week. If it's a full on neck dissection, he could need a month or more. I'm afraid that one is one that you'll need to cross when you come to it.

Regarding his job though, since he has a cancer diagnosis then he is automatically now a parted of the protected group in employment law. They cannot discriminate against him for any time off he needs for his cancer treatment. If you're concerned about it, the best thing to do would be to call the helpline and ask to speak to the employment rights team. They'll be able to explain it all much better than I can, as employment law is very complicated.

With the RAI, he will need a minimum of a week off as that covers the time in the hospital in isolation. After that, it's partly down to how many showers he has and how much he drinks. You need to drink and shower to remove the excess radiation to bring your levels down. That way when you're released, you don't have too many restrictions like not being around kids or pregnant people, or not sleeping in the same bed as one another etc.

Lass

Xx

Hi Durham 

Im guessing from your name that you might be Durham based. I am too and went through this last year although I had follicular type which I think is different to what your partner has but the treatment I understand is similar. If I can be of any help in this regard please don’t hesitate to ask xx 

Hi Lass,

it was a treatment dose.  I think it is fairly new practice (as you say treatment policies are changing) to treat low risk patients  like me with a low dose of Radioactive Iodine. 1.1GBq,

Dr Wadsley, the Oncologist at Weston Park where I am being treated has conducted trials (see link) https://www.ncri.org.uk/wp-content/uploads/2018/11/Wadsley-thyroid-cancer-for-online.pdf and guidelines for RAI are being amended following those trials.

It was administered at 9 am and after 30 mins  we were encouraged to drink lots of water and after every visit to the loo we were checked with the Geiger counter until we reached a certain level of radioactivity. All 3 of us got to that level at around 2pm .Then we were allowed to go home but not on public transport and with restrictions. We had Thyrogen injections Monday & Tuesday, Wednesday RAI and Friday the scan. After the scan the restrictions were reviewed and mostly removed.

Hope this helps.

Swichee x

Thank you safc. I’m sure I’ll have lots more questions in the days and weeks to come. x