New here with Thyroid cancer (oncocytic) diagnosis

Hi MCG

Welcome to the club :)

I had the right removed originally in Dec 24 and then the left mid Jan25. I feel very well and keeping busy!

Like you i am a positive person and I think maybe you are being to hard on yourself, it is a big shock for you to process.

I am booked in for RAI treatment on 7/4/2025 and must admit not looking forward to being stuck in a room alone, so lots of stuff to be downloaded and will find some DVDs to watch.

Please feel free to contact me if you fancy a chat, 07775 583582

Jane x

Hello MCG 

Welcome from me too. 

If you click on my profile you'll see that I was diagnosed with the Oncocytic/Hurthle Cell variant myself in May 2023. It was a shock as I'd had to fight for the lump on my neck to be taken seriously by my GP first and then hospital staff with everyone, even the surgeon telling me it wasn't cancer! 

You're in good company here, please feel free to ask any questions and be gentle with yourself. 

Hi River71

Thank you for sharing your experience I am sorry to hear you had to fight for your lump to get checked. 
Thank you for willing to answer my questions,  yes I am trying to stay positive believing it is going to be okay.

Have a good week

You're very welcome. If you have any questions about the RI please feel free to ask. I remember feeling nervous and rather daunted beforehand but it was actually all pretty straightforward and like Nevs25 says upthread,, the key is to take lots of things to keep you occupied. I ended up watching a LOT of daytime TV and doing wordsearch puzzles because I was advised not to touch my phone much because of the process  of shedding radiation. I asked the team to wrap my phone in plastic so I could text my family and friends bow and again though. That was a bit of a bizarre experience having a kind of  shrinkwrapped  phone! 

Hi MCG,

I also have the same type of thyroid cancer.

i had my RAI treatment June 24 and stayed in a week.  We are all so different in how we react. 
River 71 really helped me and kept my spirits going along with my iPad phone and a big jigsaw. I felt very nauseous and washed out and slept most of the time. It was a heat wave outside and I was very cold in the room so take layers! 
Happy to answer any questions.

I feel that there is very limited information about our type of thyroid cancer( Oncocytic/ Hurtle Cell) and its treatment and monitoring. 
If you find anything out please share with us on here. I am not under a specialist centre and not had the best support.

I still attend a local cancer charity who have been amazing

wishing you well. You are not alone X

Hello,

Sorry to hear the news of your diagnosis, but you aren’t alone, I was diagnosed with this variant in June 2024.

Bit of background, I went to the doctor in Feb 2024 with a chest infection and the GP found a lump in my neck. After indeterminate scans and biopsies, I had a diagnostic hemi-thyroidectomy in May 2024 and I received my diagnosis in June 2024. I then had the right side of my thyroid removed in July 2024 and was started on 125mg of Thyroxine which I manage really well on.

I had my RAI treatment in October 2024 and I had no side effects and my radioactive levels dropped quickly. I was in isolation for three days but it passed quickly enough with a jewel art kit and watching tv and listening to music. I had my PET scan a week later and I got my results in December 2024 and my oncologist is happy with how the treatment went and there was no uptake of the radioactive iodine elsewhere in my body.

I have been placed in the intermediate risk category due to the histology of the tumour (oncocytic), my tumor size (4cms) and some vascular invasion. The treatment is exactly the same as lower risk categories and my oncologist is satisfied that when the tumour was removed it hadn’t spread outside of my thyroid, but I still has massive anxiety about the type of variant, because it’s rarer and more aggressive, but trying to remain positive that it was all removed. 

Please know you aren’t alone and being worried and anxious is all part of the process. I have good and bad days but talking really helps. Good luck