Has anyone on here had Hurthle Cell thyroid cancer?

[HurthleCellHell]

It’s so hard to find posts from others with this anywhere online.

I’m terrified that my cancer is spreading and the radioactive iodine treatment (RAI) that I’m due to get in two weeks won’t be strong enough to kill it. I’ve read that hurtle cancer cell is more aggressive than other forms of thyroid cancer.

I’m 44 years old, had a lump on my left thyroid for 8 years, multiple biopsies and told no cancer and nothing to worry about. It grew and I became very ill with hyperthyroidism 2/3 years ago which they tried to manage with medication.

They took out the left side 10 months ago (I had to push for this) which was 67cms - no one told me and I only read online after the surgery that it’s more likely to become cancerous when over 40cms. 4 months later I was told they’d found Hurthle cell cancer during pathology. They took out the other side the next month and I’ve had to wait five months for RAI because they say I’m low risk (cancer wasn’t in right side and it’s marked as T1 non invasive).

I’m due to get RAI in two weeks but I strongly think it’s spread within my neck and I’ve read that RAI isn’t very effect in treating Hurthle Cell patients. I can’t feel anything with my fingers but my neck is sore, particularly on the right side and it sometimes feels like there’s something inside my neck when I swallow and turn my neck right. Also my lower back right jaw is feeling a bit sore.

I told the macmillan nurse two weeks ago and she spoke with my surgeon who said he wasn’t worried because I can swallow fine and I don’t feel lumps with my fingers, the pathology results say it’s non invasive etc (he did feel my neck and look down my throat two months after the last surgery).

I’ve also read that they give lower dosages of RAI to patients classed as low risk which I don’t agree I am. I’m a sole parent to two teenagers and I’m terrified of who’ll take care of them if I die. Can anyone share their experiences of this type of cancer and can they give me advice on what treatment/surgery to pursue.

I am sorry I have no advice, just a hand hold. I am currently waiting for a surgery date to have my (possibly cancerous) thyroid removed, so I do have an idea of what you are going through.

I didn’t have the same thyroid cancer as you but was told my thyroid was enlarged and was “precancerous “. It was recommended for it to be removed and it was. I’ve been on thyroid replacement for at least 20 years without any problems (my labs are drawn several times/yr). Idk if I missed something but I hope this helps).

Thank you for your replies. Part of my problem is my cancer is very rare and mainly affects older people so it’s hard to find people online who’ve been through this - even on the main cancer group chat rooms like MacMillan.

The literature given to me by the hospital said it should take 6-12 weeks to recover from the operation but I’ve now read elsewhere it can take up to a year. The neck is so complex and we use it so much.

when this type of cancer spreads in the neck you usually get painless lumps in your neck that you can feel with your fingers which I don’t have. And any spread outside the neck is typically asymptomatic and picked up in blood tests.

I’m now thinking the tightness and intermittent soreness/pain/discomfort I’ve been feeling is probably a combination of nerve damage and scar tissue.

the information online about how effective RAI treatment is on Hurthle cell is mixed so I’m just going to have to trust the doctors which I’m finding hard to do because other doctors have let me down in the past.

I really wish I’d had the original lump surgically removed years ago, but they never told me the biopsies done then wouldn’t pick up on all forms of thyroid cancer and that the larger the lump became, the higher the risk of it becoming cancer.

good luck with your surgery @alwayscrashinginthesamecar1 Both of my operations were pretty straightforward and I hope yours is too. It was an NHS surgeon I had and he was excellent.

I'm on the thyroid replacement meds too @Sbmpp and so far I’ve been fine with them. Fingers crossed I’ll be in the same boat as yourself in twenty years.