consultation with specialist after Lynch diagnosis

mollymuch
mollymuch Member Posts: 18
in Colorectal Cancer #1
I thought this might be the best place to start for feedback from others with Lynch syndrome - after your Lynch diagnosis, did you seek a consult with a specialist beyond your primary oncologist?

I had endometrial cancer and recently received my Lynch diagnosis through genetic testing, etc.

What I'm wondering is if it's worth a conversation with a dr with specific experience with Lynch syndrome. There aren't any in my home town that I know of (Portland, OR) but it wouldn't be the first time I'd traveled to meet a dr.

My genetic counselor has had some advice but no direct experience. Ditto my gynecological oncologist. But maybe it's not necessary. Then again, that's what I thought about getting a second opinion after my endometrial cancer diagnosis -- and I was amazed at how different the opinions were from the different doctors I consulted. The variables so far to me seem to be whether or not to get an endoscopy in addition to colonoscopy.

I'm also curious about the aspirin study, of course.

Anyway - any thoughts or experiences would be helpful. I'm wishing there was a forum just for Lynch (or genetic cancers) - maybe there is one?

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