I discovered earlier this year that I carry the RET gene. As a result I had blood tests and scans, to see how things were. I had no obvious symptoms of anything, it was just routine testing. I found out last week that I have a 1cm cancerous nodule on my left thyroid and tiny 1mm nodules on right thyroid. Lymph and saliva glands are clear. I am meeting the surgeon tomorrow to discuss dates for complete thyroid removal, all dependent on adrenaline results.
Just wondering if there is anyone else on here with the RET gene and diagnosed MTC? I am female, 50. We will have to get our three children tested. It is likely my Mum had the same gene. She was diagnosed with Ovarian Cancer at 51 and died at 61. I was going down the genetic testing route to check for BRCA, which I don't have, but ended up with RET. So all a bit of a shock at the moment. Thank you all` x
Hi Linseed, I'm sorry you are going through this and I'm sorry to hear about your Mum too.
I have MTC but mine is sporadic not genetic. There's not many of us on this forum. It's so rare it's hard to get reliable information. Are you being treated by a surgeon who is a specialist in MTC? It's important. You can find a list of them on the BAETS website.
Any more questions do ask and I'll do my best to answer them.
X
Medullary Thyroid cancer dx May 2023
Thank you so much for this. I am not on any of those Forums, so will have a look. I appreciate you letting me know. Met surgeon today, not sure if he is MTC specialist, will have a look at that list. He seemed pretty clued up on MTC, so hoping that is a good sign. Thank you for getting back to me. It is much appreciated. X x
Hi Linseed, hope you’re doing ok after the initial surprise. I also have MTC, and I’m currently waiting for the results of the genetic testing to confirm if it is the hereditary or sporadic version. My MTC was diagnosed after I had what was suspected to be a benign nodule removed. I had my second (completion) thyroidectomy surgery done just over a week ago, and apart from a blip when my calcium levels went a little bit crazy, it seems to have all gone very well. As k9crazy says, it’s critical you use the BAETS website to make sure you have an experienced consultant - transferring from my original ENT team to the specialist endocrine team I am with now has made a world of difference for me. Sending lots of positive thoughts your way.
Hi skies. Thank you for getting in touch, and sorry to hear your journey has been going on for quite a while. The team I am under have been brilliant. I haven’t checked BAETS website, I will do. I started off under an Endocrinologist privately here in Bristol, and now also under a Throat Cancer Specialist surgeon on the NHS who will do the op. I will stay under the same Endocrinologist for the rest of my life, thankfully under the NHS as we don’t have private health insurance. So I do have confidence in the team. In fact my Endocrinologist was pushing for me to be screened as soon as I discovered I had the RET gene, so it is down to her that it was caught incidentally.
Let me know how the genetic testing goes, as if it is the RET gene, the other tests that you have will probably match the ones I am having, so I would be more than happy to chat to you if needed. I notice you are in Wales, I had my genetic testing done through the Spire in Cardiff.
Wishing you happy thoughts in your recovery after your recent op, and thank you so much for getting in touch.
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