Follicular Thyroid Cancer

Hey there Lumi,

Welcome to the forum, though I'm sorry you've had to join us.

Sadly, there is a lot of rubbish online regarding thyroids and thyroxine. The horror stories often come from people with thyroid disease rather than thyroid cancer, and that comes with all sorts of autoimmune issues that thyroid cancer doesn't.

So there aren't really any common health implications of removing your thyroid due to cancer. You take thyroxine to mimic the hormones your thyroid would have made, and generally that is the only difference you notice in your life.

There are lots of people here who have had a diagnostic hemi come back as cancerous, and then a whole range of decisions after that. Some have gone for a total thyroidectomy then RAI if recommended, some have gone for a total and not gone for the recommended RAI, and some have gone for the watch and wait option.

Each person needs to make the decision that's right for them because that's the only way that they'll have a peaceful mind if things don't go as expected. I would only say, that I'd question your doc as to why a total and RAI were recommended. Was it because of just the size of the lump? Was it because the cancer had started, or had fully, broken out of the capsule? Was it because there was lymph node involvement? Etc etc.

They are much less gung ho these days about completions and RAI, where it used to be any sign of cancer then the whole thyroid was removed and everyone was given RAI. Now, they'd rather leave half in and not do RAI if they don't have to. So if they are recommending them both, I'd def want to know why before making my final decision.

Lass

Xx

Hi Lass,

Thank you so much for responding.

The cancer was just confined to the nodule. It hasn't spread to any of the lymph nodes. I think that I am classed as a low risk case because of my age. 

I have read online that follicular cancer is more likely to spread to other locations such as lungs, brain, bone which is a worry. 

Like you said, there are a lot of scare stories on t'internet and I have been trying to avoid going online, but at times have been looking at blogs, vlogs, you name it, just to try and find some clues about what I should do. 

I am seeing my Consultant in 2 weeks so will be sure to ask all the questions.

Thanks again,

LumiBear 

Heya,

I'm guessing that's low risk of recurrence? That would be further lowered with the completion and RAI, because it gets rid of all the thyroid tissue that could turn nasty.

Yes, follicular is more likely to spread to the bones, lungs, or liver rather than the lymph nodes. But not that it's more likely to spread in general. I bucked the trend with papillary that spread to my bones - lump found when I was 30. Lol

But I'd def steer clear of the wider internet - are you in Yorkshire btw? - and stick here, The Butterfly Thyroid Cancer Trust, and Cancer Research. You can trust the info you get on those sites as being accurate and up-to-date.

Lass

Xx

Lass,

You poor thing.

How was the bone cancer detected? Was this at the sane time as your thyroid cancer diagnosis?

Im in London btw. 

LumiBear xx

Bone mets because it's still thyroid cancer, just in your bones. Bone cancer is a whooooooooole other beast. Lol. 

They found it when I had my RAI and rather than just my neck glowing as expected, I lit up like a Christmas Tree!

Lass

Xx

Oh I see. 

And the RAI treats the thyroid cancer in the bones too or is there a separate treatment for that? 

Sorry for my ignorance, I'm still learning about it all.

I had a chest X-Ray shortly after my diagnosis and that was all fine so I think it was just contained in the nodule. 

How long ago was it that you had your RAI and have you experienced any weight gain, fatigue or depression? 

LumiBear xx

No need to apologise at all! We were all where you are now at one point. So we all understand what's in your head and how you might be feeling.

RAI will treat thyroid cancer wherever it is in the body, unless you are very unlucky and your cancer either starts off as, or becomes non avid. This is when it stops absorbing iodine, and is a very very rare thing to happen.

So I've had RAI 4 times so far, 3 doses at the highest amount, and 1 dose in the middle. These days they usually only give low doses for the low risk patients where they are just doing RAI as a precaution. Middle dose if it's tried to escape the capsule.

So I had my first dose May 2013, second dose November 2013, third dose 2015, fourth dose 2017 I think it was. So it's gone from being in my: skull, shoulder, arm, ribs, and my entire pelvis in multiple places, down to just being in 2 places in my spine, and one rib.

So, I'm not the best person to ask about fatigue, depression, and weight gain - because I'm not your typical case of "one and done". If I had been, then I'd have answered no to all three of those things. It would have been a year from diagnosis to the all clear, and then I'd have got on with my life again like most other folks here do.

For me though, because it's in my bones I deal with pain every day, I do have a chronic fatigue problem - they suspect it's from the amount of radiation I've had though rather than thyroid issues, I have put on weight - but that's because I went from an active and working 30 year old, to a disabled and sedentary 31 year old. Anyone who did that would put on weight, but I'm losing it again just now because I've had enough of it, and I've a wedding to go to in October! As for depression, I have my moments. But then again, anyone in my situation would have their moments as life is so very different now to what it was 6 years ago. You can see my whole story on my profile if you're interested, just click on my name.

So this is why I'm always on the side of get it out and zapped. I don't want anyone else to end up in the same situation as me if their cancer should spread.

So as I say, I'm not the best example as I'm def not the norm, but let's see if barbaral or Minouche or will share their stories with you. They've all had different operations and different treatments, so it will give you a more rounded view than just my own.

But do keep asking questions, and we'll do what we can to help!

Lass

Xx

Thank you for sharing this with me Lass. Sounds like you've really been through the mill.

It is great that you are helping others like myself with your knowledge and keeping a sense of humour about the whole thing... very important, many times I have felt like if I didn't laugh, I would cry. 

I am new to forums so I will take a bit of time to suss it out. Im sure there is a lot of helpful info on here. 

Wishing you health and happiness,

LumiBear xx

Hi lumibear, I was also diagnosed with follicular thyroid cancer at beginning of Feb this year.  I had a 4.2cm lump and  one side of my thyroid removed at beginning of January, then went for completion of thyroidectomy on 4th March. I had my follow up appointment yesterday and got told the other side was clear :) I am glad I got it removed though because I would never have settled not knowing. I am going for radio active iodine, the date for this is to be confirmed. 

I was worried about the effect of taking thyroxine would have on me, but 4 weeks now taking it and I don’t feel much different than before! 

Before my last surgery my husband and  I met with my consultant and asked loads of questions, I found this very reassuring.

i have found reading posts on this forum reassuring as well, all my thoughts and feelings are normal and other people have the same questions/worries.  

X

Hi LumiBear,

I am sorry to hear about your diagnosis but you have come to the right place. We are all different and have to make out own decisions based on our gut  feeling, docs advice and the information we find out there. So here is my story.

After my hemi in April  last year II was diagnosed with first Follicular Thyroid Cancer which was then s revised to Hurtle Cell Carcinoma, (minimally invasive but big, 5.5cm tumour, contained within the Thyroid, no vascular invasion)   I then had the other half out together with some lymph nodes in August after which I  was started on Thyroxine. I had low dose RAI mid-October and was told there was no spread to anywhere else in my body. Yippee.   Move on 7 months and generally speaking I am absolutely fine both in terms of having recovered from the ops, being sans Thyroid and being on Levothyroxine.  Any weight gain I cannot blame on the medication as I have a very sweet tooth and I have had arguments with my weight all my life and this has not gotten any worse since I started on Levothyroxine. My energy levels are fine and although I do experience low moods occasionally, again I cannot hand on my heart say this is due to the medication. Getting  a cancer diagnosis takes its toll and I  think this is now somewhat catching up with me. This and me being at a stage in life where low moods can be caused by Menopause, frail parents, Brexit etc etc.

I don't know if my experience is of any use to you but know that all of us on this forum have been where you are now. I did my research and decide to trust in my MDT's recommendations and went for completion surgery + RAI because  I felt I wanted to rid my body of  the cancer and reduce the chances of it reoccurring.

Good luck with everything.

Swichee