Lynch Syndrome

kren
what exactly do they do for "bladder checks"?
Do they just send a urine for cytology or do they do a cystoscopy every year?

Hi Ladies:

Lynch syndrome here too.

If you need to get tested, do some research and find out if any medical facility is in the process of studying Lynch and offering free testing. That's how I got my results. Of course the genetic doctor conducting the study wasn't covered under my insurance, but the out of pocket cost was money well spent.

Just a recommendation to add for annual GI testing - In addition to an annual colonoscopy and endoscopy, ask your docs to get you a baseline pelvic and abdominal MRI this year with follow up MRI's each year or two. As we know, pancratic cancer (as others) are linked to this genetic mutation. The good news is if we're diligent, get our testings annually, the odds are in our favor.

My father has Lynch, had colon cancer twice in the span of 20 yrs and thanks to his diligence in colon screening, only ever needed surgery - never chemo or radiation or any other cancer treatments. If we have to have this mutation, that's encouraging to me.

Great information Lynchsister! This was very positive and informative.

The reason I am asking about the screening for bladder cancer is that from the reading I have done, it is one of the more common "secondary" cancers to occur post external beam radiation.
What I am wondering if whether a annual urinalysis is adequate, or do they do a cystoscopy?... when screening for bladder cancer.
I know that hematuria is the most common sign of bladder cancer and that it occurs early.
Thanks

My doctor recommends a baseline triple phase ct scan and then annual urinalysis and urine cytology

WHen I saw the gyne/onc yesterday she said that they had started recently testing all endometrial cancers (the actual tissue) for microsatelite instability, which if pos, they go on and do genetic testing. (and all colon cancers)
Not sure if this is just in Canada though
Apparently only 15% of those with lynch syndrome have actually been diagnosed.
So this is a means with which to catch those families early