It’s so hard to find posts from others with this anywhere online. It’s not even found when I search categories and topics on this forum.
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.
