My husband was diagnosed with colon cancer a month ago. He had a subtotal colectomy 3 weeks ago. We're meeting with the oncologist this week. Because of the Muir Torre aspect I wondered if anyone had any advice relating to follow up care? He's had a sebaceoma and a sebaceous carcinoma removed within the last six months. The good news is that 25 lymph nodes were clean and the tumor hadn't broken through the bowel wall.
thanks
thanks
deleted_user
I have Muir-Torre. I see a dermatologist every six months. He almost always takes a biopsy but, in four years and over a dozen biopsies, I've only had three lesions that required follow-up. The rest of the screening is the same as for Lynch.
Megan50
What is he biopsying (sp)? Do you have lesions or just a random biopsy?
deleted_user
Not random. He biopsies any suspicious lesions, He's a specialist in Muir-Torre and other genetic disorders so he's super vigilant. My sebaceous lesions look just like asult acne and sometimes are just that. Unless they're on the face, he does a mall punch biopsy with one or two stitches. If it's on the face (twice) he sends me to a surgeon who does the best cosmetic surgery I've ever seen.
deleted_user
Meant to say "adult acne."
Megan50
Just back from the oncologist. He staged my husbands cancer as a one and said no further treatment is needed. We'll follow up in six months. We are still waiting to here from the genetic GI's office on further testing. They've done the MSI (abnormal) and are trying to get our insurance to pay for more specific testing. Nice to have good news!
deleted_user
If you need support or information, contact Lynch Syndrome International. They're very helpful!!
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