Rare Thyroid cancer

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I was recently diagnosed with a rare thyroid cancer, Cribriform Morular Variant of Papillary Carcinoma, has anybody heard of it? I can get very little information about it. Consultant said that this was curable. I had a lump on my right thyroid 5.5cm had FNA done and result was inconclusive which led to my right thyroid being removed and results came back with CMV of PC. I had to have my left thyroid removed 15th of March, test on it came back clear. This cancer has links to Colon cancer so I'm being sent for a Colonoscopy and Gastroscopy on Wednesday, I think I'm more stressed about it. I've also been to the genetic clinic as there has been quite a few members of the family passed away with different cancers including Bowel cancer. I just feel so stressed at the minute!

I'm on a high dose of Levothyroxine 125, was told I would lose weight (which would be great!) but so far all I've got is an intolerance to heat and I'm extremely tired and moody at times. I'm waiting to hear if I'm getting the RAI treatment which consultant has said that I probably will be getting. How long after the operation do you get the RAI as I would like to get this done ASAP as my daughter is expecting her first child and is moving in with me middle of June?

Lass over 3 years ago

BarbaraL is on holiday in Morocco and for some strange reason can’t get the Mac site to let her log on so she asked me to post this for you:

Hello, I’ve been on the site for 11.5 years and haven’t heard about your variant of PTC before. That doesn’t mean it’s necessarily more dangerous than other more common variants, but it’s fantastic that your pathologist has identified it’s something special so that the medical team can keep an eye on your colon for any ‘odd’ stuff going on down there. Bowels are not a typical place for thyroid cancers to pop up, so knowing what they know will undoubtedly be very valuable.

I’m not sure if you are in the UK and even if you were, it might be hard to say how long you’d typically wait for RAI. Everything’s a bit ‘non-normal’ in the aftermath of Covid. Historically, RAI was typically given around 6 to 16 weeks after surgery – earlier if you went private or got lucky on availability, later if you had complex surgery (people with neck dissections often have to wait for them to heal fully before RAI, or if there was massive demand on the facilities at the hospital. I think you’ll need to check that with your medical team.

Guidance about how long to stay away from pregnant women or babies also varies according to the hospital, the dose given and various other factors. With it now being the start of May, if you don’t already have a date, I rather doubt you can get prepared, zapped and recovered before the baby comes. You might get lucky, but please prepare yourself for potentially not being the most useful grandma on the block if you’re isolating after RAI.

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

Lily60 over 3 years ago in reply to Lass

Thank you for your reply, just to update I had the colonoscopy and gastroscopy and all was clear. Also I am getting the RAI, I have had my operations in Derry but the RAI treatment will be in Belfast.

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