Follicular Variant Papillary Thyroid Cancer

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Hi all my name's Tracy and I've recently been diagnosed following x2 FNACs suspicious with Thy3a and the second more Thy3f.

This all started over a year ago where November 29th 2022 got diagnosed with Graves disease, 23rd December sore throat, mid January I could feel a enlarged bit on my left side of my neck, ultrasound showed a 1.8mm thyroid nodule, sent for FNAC, that then went to a MDT well 3 actually as couldn't decide what course to go, decided to wait of surgical review which was for the 10th August, meanwhile another biopsy was don't which showed the Thy3f.

Met surgeon booked in for surgery on 15th September for a full thyroidectomy, surgery was alright wasn't as sore as I thought and nothing was an issue stayed off work for 2 weeks as I'm a domiciliary carer and couldn't strain my neck.

Histology took forever as they told me 2-3 weeks for result, I rang after 3 said 4-5 as problem with staffing, then again I rang after 6 which they had just came back and my thyroid nurse wouldn't tell me over phone trying to think of excuses why which I knew why as the results weren't the best, anyway turned out it was Follicular Variant Papillary thyroid carcinoma. Now surgeon said since I'd had the removal already and the margin was close he would assume they would do Radio iodine treatment just to be sure, however I've met oncologist in the 15th December who told me it was a positive margin. I received a letter saying positive margin, lymphovascular space invasion which what I've read is that was in or around my lymph nodes and that I'm high risk for recurrence.

So now I'm just waiting for letters to go get the Radio iodine treatment which has said to be within 2 months since the 15th December.

To be honest I was actually ok until I got that letter and my husband keeps saying maybe it's just the wording but it just sounded way worse on that letter, soon as I go to hospital I will clear up with them.

Anyone have any advice on what things to expect from the radio iodine treatment?

Thanks for reading

Tracy x

Millibob over 1 year ago

Hello TrinityTrace I was browsing the Community and have just picked up on your post and noticed you haven't had any answers to your question. I can't answer you regarding radio iodine treatment as I have a different cancer. However by me responding to the post it will be "bumped" back up to the top of the forum and hopefully seen by Community members who may well have had this treatment.

I wish you well with your treatment. Best wishes - Brian

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latchbrook over 1 year ago

TrinityTrace

Hi Tracy and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have any experience with radioiodine treatment but I noticed that your post hadn't had any replies yet from the other forum members.

I've done a search in the group and found these posts which mention it for you to have a look through. You could reply to any of the posters if you wanted to ask more questions.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope this helps

Anne

"Never regret a day in your life, good days give you happiness, bad days give you experience"

River71 over 1 year ago

Hi Tracey,

I've just seen your post. I totally understand your worries, the stark medical language can be frightening. My approach has been to Google the terms, taking care to pay attention only to reputable websites and to boy gall down any dark " rabbit holes" on the Internet while doing so. Having done this research, I then feel better equipped with a notebook of questions jotted down before each appointment.

I had the Radioactive Iodine treatment done in October at my local hospital and stayed in the isolation room for two days after which I was allowed home where I had to isolate myself from my family in the house for another week. Do you have any particular questions about the treatment you'd like to ask? I'll try to answer them if I can.

TrinityTrace over 1 year ago in reply to River71

Hey and thanks for the reply.

Ok so, did you have any side affects? Was it a pretty straight forward thing like I go in, swallow a tablet stay in a room for a few day etc

They didn't mention me isolating at home so how did you do that? I have X2 kids well an 16 and 18 year old and X3 cats and a hubby, so would I have to kinda stay in bedroom and not allow people or cats in? At all?

Also I'm a domiciliary carer so if I have to isolate then I'll make sure to let them know to not schedule me for a little while longer.

Also my oncologist mentioned a scan afterwards how soon is that do you know?

River71 over 1 year ago in reply to TrinityTrace

Hello again,

I was warned that I might have some nausea but actually I was fine. Yes, it was pretty much that, swallow a tablet and then stay in isolation. The Nuclear Medicine team would come in wearing protective clothing every few hours, measure I think 2 feet between us and then use the geiger counter to see how quickly the radiation was going down. Most of it is passed in urine so drinking lots of water is important and having two showers a day too as some comes out in sweat. You'll have your own bathroom for this.

I had the scan before I left hospital and was in for only two days because I live quite close to the hospital and so my husband, who drove me home, wouldn't be close to me for a long time in the car.

Before you leave hospital ask the Nuclear Medicine team how long you'll need to isolate at home. You might have to avoid the cats as the radiation is more dangerous the smaller the body is. I live with a teen too and my husband. I stayed in the spare room for a few days and they made food for me and stayed 2 feet away from me at all times. I was told to clean the shower after any use and to wash my clothes, plates and cutlery etc separately to my family for a week.

After a week I went back to the Nuclear Medicine Department to have my radiation levels measured again and was told that it was now down to a normal level so could live life as normal again. It was nice to have hugs once more!

Maybe you could ask your thyroid nurse or Oncologist for advice about when you'll be able to go back to work? It could be just over a week perhaps?

I hope it goes well for you and that you come back here to let us know how it went. Let me know if you think of any other questions and I'll try to answer them.

TrinityTrace over 1 year ago in reply to River71

Aww that's great thanks for the info much appreciated, feel a little more at ease :)

Yeah I will do thanks!

Don't know how I'm going to control my cats or my husband lol

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