Lynch Syndrome (M1H1)

[jbajat]

I am new to this forum and am thankful for finding a place to share my story and find people that may understand what I am going through. I would appreciate feedback and possibly finding a few "Lynch" friends to communicate with.

I am 54 years old. My father was diagnosed with colon cancer at 42 (1976) and died at 52 after multiple surgeries, chemos/RADS and recurrences. My sister was diagnosed at 40 (1999) and died at 42.

I had my first colonoscopy at 32 (1993) and had a 1.2 cm atypical polyp removed (all the way at the cecum- end of colon by appendix), I am positive I would have been dead at 40 had I not started having scopes done early. It was because of my father's early diagnoses I went into nursing and happened to ask a GI doc what I should do for screening- he recommended having a scope 10 years prior to the age of my father's diagnosis.

I have 3 biological kids that are 27, 26 and 23. They have always known that they would need to start having screening scopes done in their late 20's. We decided to have testing done for Lynch Syndrome and hoped that possibly my kids did not have Lynch and thus would not need to have early screening. I had the testing done first and it came back with the M1H1 mutation (insurance would not cover and it was costly). All three of my kids have been tested and the results came in one-by-one in the last 2 weeks ALL POSITIVE. Each report has been more devastating than the last- I am devastated, depressed and so sad that I passed on this to them. Supposedly there is a 50-50 chance and yet here we are.

My older kids are in the process of scheduling GI appointments and their first scope, the 23 year old will have it done at 25.

When my lab result came back I began to read up on Lynch (ihavelynchsyndrome.com has been very helpful among other sites) and realized my kids should have had their first scopes by 25, colonoscopies are recommended every 1-2 years, stomach cancer is the next highest risk and a screening EGD (upper scope) should be done at 35.....among other cancer risks to be aware of - ovarian, uterine, small bowel, gall bladder ducts, skin, brain...... I really felt overwhelmed. It had been 3 years since my last colonoscopy (I have had too many to count).

Last week I had both EGD and colonoscopy. Upper scope was clean but I had 2 polyps, again at the cecum region of previous polyp. They were both "flat" polyps- 1 small and the other just over 1 cm. Initial pathology is that it is "tubulovillous adenoma with mild changes". The surgeon said he was able to remove 90% of the polyp and burned as much as he could of the remaining.

So I will see what the recommendation is- probably follow-up colonoscopy in 6 months or 1 year. Had there been moderate or severe changes, there was talk of possibly removing the right colon.....I actually was all for that when I was coming out of anesthesia and first heard about the polyp....said I was already bowel prepped and ready for it to be gone. Now I'm thinking- if I can catch them early....they can't grow to cancer and spread.

Side note- I have had previous hysterectomy and ovaries removed so do not need to worry about those risks.

My kids have taken the diagnosis in stride, stating they just always felt they "had the bad gene". Somehow the genetic testing got my hopes up that maybe I hadn't passed this on to them.

I know the good thing is that knowledge is power and with frequent colonoscopies and catching the polyps early (and they will be growing at some point) then we can hopefully avoid colon cancer.

I became a vegetarian after my youngest was born to try to decrease my colon cancer risk and my 23 year old also opted for said diet since she was 13 years old. The other two eat pretty much whatever they want.

Sorry this rambled. That's basically my Lynch story. I am still reeling from this and would appreciate knowing if others are in the same boat.

Billie

[BeansMama]

I also have Lynch syndrome, mine is the MSH6 gene. My daughter is too young to test yet as she is only 9. Per my oncologist she will need to start screenings at 30, 10 years earlier than the age I was when diagnosed. Of course if she does test positive for Lynch I would encourage starting screening even earlier.

My oncologist had me tested due to my age (younger than the typical colon cancer onset) and the fact that my mother had endometrial cancer (thankfully she has been NED for almost 10 years). Both red flags for Lynch.

My illness and Lynch positive result spurred many in my family to get tested as well. It is horrible that your insurance would not cover it. My family has been able to use my diagnosis and positive Lynch test to get their testing covered. I have 2 older siblings and an aunt who have come pack positive so far - at least out of the family members that have shared their results with me. The good news is that none of them have been diagnosed with cancer and all of their screenings have come back negative. It is possible to have the mutation and never develop cancer.

Another thing I found in my research is that cancer associated with Lynch responds very well to treatment - so while the cancer part is bad, it is good that it responds well.

I totally understand trying to wrap your head around having this mutation, and the guilt of passing it on to your children (while I don't know if I have passed it on it is a big worry of mine). I am glad you have all found out before a cancer diagnosis. Unfortunately for me we didn't find out until I was stage IV. At least my illness has helped others in my family hopefully avoid cancer and catch anything that may appear before it is too late.

Please feel free to pm me if you ever need an ear. I will keep your family in my thoughts.

[sofarsogood]

Billie,
I'm Lynch positive too, MSH6. Our son just went in for the testing two weeks ago and are still waiting for the results. We're hoping for the best. Guess if you had to look for positives about having lynch, the increased screening can do nothing but help catch it early if it does come back. If you ever want to compare notes, we would be glad to share anytime, although we would probably be happier to have your opinion on things.
Take care

[Pathfindergrl28]

I am 36/f. I had my first colonoscopy in Dec. 2014 after seeing blood in my stool on and off for a few months. My GI doctor found a 1.2 cm tubulovillous adenoma, & diverticulosis in my colon. He completely removed the polyp, & it came back benign. I had the Lynch syndrome test done, and it came back negative. My GI doctor recommended getting scoped again in 3 years, but I am getting it done this October a little early at almost two years. I was a little nervous since I had a tubulovillous adenoma at age 34 that was almost 13 mm, so wanted an earlier scope.

How many colonoscopies have you had total? Does your GI doctor always find polyps? My GI doctors told me to have my daughters (who are ages 14 & 7 years) scoped at age 24. I worry that I may have passed these precancerous type polyps to them as well, and are hoping their future scopes are clear. My mom and dad are both in their 50s and have not had colonoscopies. They divorced when I was 5, and my mom remarried when I was 7, and had another daughter. I have been begging them to please get scoped soon! I honestly think these polyps run on my mom's side though... My half sister (we have the same mom) has IBS. My aunt (mom's sister) has diverticulosis like me. I am going to keep begging my parents to get scoped soon, & pray when they do, theirs are clear as well.

Prayers that your children stay polyp & cancer free as well with their future GI visits.... best wishes... add me as a friend if you like.