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SPONGE BOB THANX FOR THE 411

ABETHM
Posts: 8
Joined: Feb 2004

Appreciate the info about the genetic link. Will mom's Dr/surgeon know if what caused her cancer is genetic? I don't even know what questions to ask! I recently saw my ob/gyn for the yearly stir-up visit and he did tell me that since my mom has been diagnosed that me and siblings will need to be checked earlier than would have been otherwise. I'm 36 now.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

ABETHM -

I would suspect your doc coudn't tell the source of the cancer, that can really only be done with a DNA test. The symptoms for HNPCC are well known so depending on the symptoms that present, one can get a pretty good idea if the source might be hereditary. I was part of a study carried out by the National Cancer Institute where they did DNA testing on me, my mom, my sister, and my mom's siblings to try an map the gene. I don't know if the study is still on-going, but you can link to them through the NIH website. Send me an e-mail and lemme know if you're interested.

HNPCC is fairly well known in the oncological circles, but not well known in "mainstream" practice. Something else you should be aware of regarding HNPCC is that females who carry the gene are at an elevated risk for breast and ovarian cancer. All HNPCC folks are at an elevated risk for stomach, bladder and pancreatic cancers. Not trying to scare you - you don't even know if you have the gene - just want to make you aware so you can get into a good preventive/self-examination regime, if you aren't already there.

Glad I could be of some help - that's what we're all about!

Keeping your mom and your family in my prayers.

- SpongeBob

Sheepy's picture
Sheepy
Posts: 48
Joined: Nov 2003

ABETHM - I've had a similar experience to SpongeBob, but I'm still waiting for DNA results (it can take months - there are five known HNPCC mutations, and identifying which one is in the family is a long job - after that it becomes simpler to test the rest of the family).

Remember HNPCC is a recognised genetic cause of colon (and other) cancers - but even taking it out of the equation there does still appear to be a family element.

Standard UK practice is to begin screening at an age ten years younger than the youngest first-degree relative to be diagnosed with colon cancer.

If your mum's cancer was right-sided, it makes HNPCC more likely - but HNPCC can cause tumours anywhere in the colon - so supporting family history helps.

I agree with SpongeBob that HNPCC is known among oncologists and some surgeons, but not foremost in the mind of a typical family doctor - I suspect I knew more about HNPCC than my doctor.

Remember - do NOT be frightened of being checked. It really isn't as bad as it sounds, and could save your life. But - and I keep banging on about this - if HNPCC is suspected in your family you will need colonoscopies - a sigmoidoscopy only sees the lower part of the colon.

(One other thing - HNPCC cancers appear, according to some sources, to offer a better prognosis and chemo response than other colon cancers)

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