Minimally Invasive Follicular Carcinoma

Your reticence to take the good news about your prognosis is understandable. The docs tell us the odds are ever in our favour, but yet we still end up having cancer.

BUT, the docs are right. You are much more likely to do well than to not do well.

And I'm saying that as somebody who had similar to you but 13 years ago - and my invasion was a bit worse and my variant was allegedly more naughty., oh and I was 45 - so a bit more risky there too.

You want somebody who's getting on with normal life - yep, that's me. And it has been normal since about a year after surgery when everything was done and dusted. Touch wood, no issues since.

Hi there!

Thank you so much for such a speedy response. So glad to hear you’re doing okay 13 years on!

That’s great that things went back to normal for you about a year on - I hope I can get back to my ‘normal’ life soon too!

Did you have any PET-CT scans to check if it hasn’t spread at the time? And if so, was it after your surgery and RAI or before? And do you have those now?

It has been an emotional rollercoaster so far, that’s probably the worst part of it all. I get a lot of the unhelpful thoughts of ‘what if’. My wife and I are normally very future focused people (we plan holidays more than a year in advance!) and it feels like I can’t be that person anymore because anytime I think about something further into the future my brain just pops the… ‘what if you’re not here by then’… question in and I get stressed out and anxious, which is exhausting but normal I guess.

Thank you for your message ️

Good evening.

I had no visible symptoms but did have a persistent cough at the start of 2019. "Nodule" spotted in an unrelated CT scan and although I was assured that cancer was unlikely particularly as I was male I had two inconclusive biopsies and then one half of my thyroid removed in October 2019. In January 2020 the lab reported it was cancer. My follicular tumour was 4cm and at that time it was borderline for more surgery. After a bit of faffing around whilst UK decided to follow Europe guidelines or not I had a completion thyroidectomy in August 2020 and RAI in October 2020. Cancer had not spread and I am now 2 months away from my third anniversary with the first two reviews positive.

Like you I felt I was not playing the percentages very well but the future looks ok even though I am a male of 65.

When you are ready for RAI there are useful tips on handling that experience but meantime I wish you well for your forthcoming surgery.  Most people find a life on thyroid replacement (levothyroxine) easy to adjust to but for others adjustment can take some time. Apart from a few low energy days my life is good.Oncologist refers to me as close to "cured" as possible. Happy to answer further questions.  

Hi there - thank you for sharing your story with me, very glad to hear that you’re doing well and are as close to being ‘cured’ as is possible!

Do you mind me asking if your cancer was also the minimally invasive version of follicular cancer?

Did you have any PET-CT scans to check if it hasn’t spread around the time of diagnosis? And if so, was it after your surgery and RAI or before? And do you have those now on register basis?

Thank you for your message ️

VT1

Thanks. It was only after my hemithyroidectomy was I advised that the tumour had only just burst out of the “capsule” in which it sat. Think that probably equates to very minimally invasive but not 100% sure. After my completion thyroidectomy on the day after my RAI treatment I received a full scan and this showed that radioactivity was only spotted in the thyroid “bed” which is what the docs look for. 
On the back of that good result I now receive annual measurements of my thyroglobulin level. If that stays low I do not expect further scans. 

I had a CT scan between hemi and completion thyroidectomies. But I had my treatment with Axa/PPP so that scan isn't something that's always done with the NHS.

The most important scan is the one about 6-9 months after RAI. The scan immediately post RAI is not very helpful - just a lot of fuzzy blobs. 

I've never had a PET scan.

I do a thyroglobulin blood test once a year. I've not had any scans since 2011. If the thyroglobulin behaves itself, there's no need to do more than that.

Thank you that’s really helpful to know, I am also on private insurance (BUPA) and have now been asked to have a chest CT scan either before or after the surgery.

Was your CT scan of the chest as well? And how quickly were the results from the scan ready?

Many thanks!

Thank you for sharing that. And that’s good to know about the scans and thyroglobulin - at least I know what to expect now!

Jul-23 Update

I just had a CT scan of my neck and chest and thankfully the results came back all clear, no signs of metastatic disease in my lungs nor my bones in the scanned area. Definitely taking this as the first win / milestone - finally some good news in this predicament!

There was an incidental finding of an indeterminate 10mm lymph node in my upper chest, but the ENT surgeon is very certain that’s unrelated to the MI-FTC as it doesn’t usually spread to lymph nodes and very unlikely to jump to one random lymph node in my chest (especially since there is no lymphatic vessel invasion in my case). And 10mm for a chest lymph node isn’t really an enlargement to worry about either apparently. Phew…!

Now the next step is my thyroidectomy completion later this month (Jul-23) and then 3months after that I will have my RAI treatment.

Good to hear from you. Hope the forthcoming completion surgery goes well.