How many with Lynch Syndrome?

[taylor715]

I was diagnosed in June 2012 and received my genetic results in September 2012 and learned I have lynch syndrome. Turns out I am the first in my family to develop it which the doctors told me is a 1% chance of happening. Anyone else with lynch syndrome? And are you periodically getting screened for other cancers such as uterine, ovarian, etc.?

[Wendyz4]

I received my Lynch MSH-2 results before my surgery, I wanted as much to be taken out as possible. Already had a hysterectomy. RC tumor was close to rectum, so could not have had that function anyway. Ended up having a Proctocolectomy w end ileostomy. I'm four weeks post-op and slowly but surely healing. I would consider your ovaries or a hysterectomy, only because ovaries are an organ of lynch.

[JAZZToo]

I have Lynch Syndrome, the PMS2 mutation. It is possible that your father or mother is a carrier but never developed any cancers. Have they been tested? Do you have aunts, uncles, cousins, grandparents that have had cancers that fall within the Lynch Syndrome spectrum? I have had two Lynch related cancers, my brother who is 63 also tested positive for Lynch, but has never had any cancer. About 80% of Lynch mutation carriers will develop a cancer sometime during their lifetime, but that also means that about 20% will remain asymptomatic and never have cancer but since the gene is a dominant one, can pass it on to their children. My testing schedule, per MSKCC is a yearly colonoscopy, yearly urine cytology (to check for abnormal cells since some renal pelvic/ureter cancers are related to Lynch), and an upper endoscopy every five years.
For females, yearly ultrasound of the uterus and endometrial biopsy is recommended since there is a 60% lifetime chance of developing endometrial cancer and 12% chance of ovarian cancer, as well as an increased chance for certain other cancers.

If you do a search for Lynch Syndrome on this Board you will come across several message threads over that last few years where Lynch was discussed.

Leslie
Lynch Syndrome PMS2 mutation
2003 Colon cancer of the cecum - Stage III 2+ nodes; R. hemicolectomy with 6 mos bolus 5FU with Leucovorin infusion.
1995 Endometrial cancer TAHBS)

[taylor715]

Thank you. Both my parents got tested and neither had the gene. I plan on getting a hysterectomy at some point in my life, but because I am so young (only 20) the doctors suggested to wait so I can try for kids first. I have my first screening of the uterus this August. I pray nothing happens until I can get those organs removed too.

[jrw118]

I have lynch syndrome and it is riddled throughout my family. It is on my mothers side. My sister is also positive as well as my surviving uncle, a second cousin and one of her daughters. I had a complete hysterectomy at the time of my LAR surgery. My screenings (as well as my family members who are positive include an annual colonospy. Since I am still under an onc's care I get biannual Catscans with bloodwork as well. I also have a urologist and gynecologist @ MSK.

[disco nap]

My current screening:

Annual:
colonoscopy
CT scan - neck to pelvis

Quarterly:
CEA
CA125
Full bloodwork
urinalysis

Semi-Annual:
Full abdominal/gynecological ultrasound

Every two years:
A mammogram and an endometrial biopsy

[sofarsogood]

Lynch here too, the only history of CC in the family was a great aunt had it in her 50's. Probably never got tested for lynch because it was so long ago. She had a resection with no chemo and now she's 92 and going strong. My screening is complete bloodwork twice a year, ct scan, colonoscopy yearly and endoscopy every other year as per Mayo.

[nomadicnerd]

I'm MLH and PMS2 negative, and the only CRC patient in my family except for a great grandfather who got it in his 70s - but they suspect Lynch anyway. Since my resection in Dec. 2011, they've removed two more pre-cancerous polyps.

I have a pre-emptive full colectomy scheduled for August. Even with the challenges of an ileoanal anastomosis, the peace of mind of being rid of an unhealthy organ will be tremendous.

[JAZZToo]

You could have Lynch syndrome even if you tested negative for the known mutations. I tested negative for Lynch until the PMS2 test was devised and that turned out to be my mutation. Unfortunately, not all of the possible mutations have been discovered yet. However, if Lynch is suspected, it is probably a good idea to follow the Lynch screening guidelines for early detection of a new cancer should one arise.
Leslie
Lynch Syndrome PMS2
2003 Colon Cancer
1995 Endometrial Cancer

[barbara jayne]

I have been diagnosed with Lynch Syndrome but my mutation has not been discovered as yet.
They were very hopeful that mine was going to turn out to be PMS2, it was the last one they tested for but it was not that one either.
The downside of not having an identified mutation is that obviously no blood tests can be offered to my children and sister, but they do get colonoscopies regularly (all negative so far ) hopefully more mutations will be identified as time goes on.

Barbara x

[bwages]

i have lynch syndrome and it wasn't a huge surprise when i found out. many people on my mother's side had colon cancer but in their 70s and not in their 20s like me. my sister has a 50% chance of having it (since it is dominant) but it too afraid to get a colonoscopy. also, i don't think she believes in science as she thinks my unrepentant homosexuality is the cause of my cancer. i will definitely not have biological children in light of this and i hope my sister's ignorance won't impact the health of my niece and nephew. My doctor's plan for my lynch syndrome is quarterly CTs and colonoscopies for the time being. i would like for my relatives to get the genetic testing but mostly they do not grasp the importance or maybe are too afraid of ending up like many of our relatives a couple generations back. sometimes it can be frustrating but i try my best.

[annikamolander]

Hi,
This forum made me aware of Lynch. I tried to fight to get a gene test in Sweden, as I had a ovarian
tumor, CA125 and my mom just died in a brain tumor.
Why cannot the doctor just simply give the test, instead of a long talk of why
I should not do it?

Warm thoughts and best wishes,

Ann

[NWgirl]

Two of the 2012 Colondar Models have Lynch - you can read their stories here. Mr. January, David Dubin, has even started his own non-profit to raise awareness not just of Lynch Syndrome, but colorectal cancer in general. I've listed his web-site below - under the colondar stories. I'm sure other Colondar Models and a number of folks here on the board have Lynch. It does require you be vigilant about screenings. I'm not personally knowledgable about it other than what it is and that it requires you be watched closely. But many here do have knowledge of it and unfortunately, personal experience.

http://www.colonclub.com/the-2012-colon ... uary-2012/
http://www.colonclub.com/the-2012-colon ... mber-2012/

http://www.aliveandkickn.com/ This is David's web-site. He's a pretty good writer with a great sense of humor. Living in NJ with his wife and their 3 boys, most of their events, at least for now, are in that area. I know he's looking to expand his soccer events to other parts of the country as well.

[teachpdx]

I have lynch syndrome and I have/had stage 3 rectal. My mom died of metastatic colon cancer when I was 25. I got screened early at 40 because of it and didn't get screened again until 53 - too late. I had a complete hysterectomy when I have my cancer surg to prevent because of lynch syndrome I wil continue to get screened yearly - I think

Kristi

[Kathryn in MN]

You could have Lynch syndrome even if you tested negative for the known mutations. I tested negative for Lynch until the PMS2 test was devised and that turned out to be my mutation. Unfortunately, not all of the possible mutations have been discovered yet. However, if Lynch is suspected, it is probably a good idea to follow the Lynch screening guidelines for early detection of a new cancer should one arise.
Leslie
Lynch Syndrome PMS2
2003 Colon Cancer
1995 Endometrial Cancer

It is suspected that I have Lynch, but my testing in 2009 was negative. Doctors at U of MN believe that my cervical cancer was actually uterine (it was very aggressive), and think I have Lynch. Do you know what year they found the PMS2? Or if anything new has come out since 2009?