Calling all Lynch Ladies...

Hi girls

Well I thought I would start this thread I just thought I would take attendance of the sisters here who carry this gene ...share your insight,experiences fanily histories etc.

I will start with my own ...although I have not yet had the genetic testing ..I have a strong family history and my sister recently tested positive.

If any of you have followed my recent journey I am sorry if I am repeating myself bear with me.

My immediate family mother only child..2 x bowel 40s & 70s

ovarian 39/40 ish,,hard to pin her down I thought 42 but now she is saying 39 so lets leave it at that.

ureter 76ish I think .no treatments for mom she is 80...

Sister breast cancer ductal 48 yrs,uterine papilary serous 49.radiation for the breast and NFT for the pap ser.

Me uterine see below..

My mothers first cousins Lynch diagnosed large family with many bowel,uterine, & the skin cancer mentioned sub something...

I have had two polyps removed one last June and one two days ago.

thats it for me

much love vs/Cheryl

I tested positve for Lynch syndrome, mutation of the MSH6 gene.
My Gyn/Onc told me that there was probably a link between my endometrial cancer and my Grandfather's colon cancer. I am currently trying to get my siblings (1 sister, 2 brothers) to get tested. My sister had a clear colonoscopy 1 year ago but my youngest brother just had polpys removed that had the potential to turn in to cancer. I would bet my last dime that he will also test positive.

My Mother died from Lung cancer but her Father died from colon cancer and all of my Grandfathers sibling's (3) died from colon cancer.

My Aunt (my Mom's sister) had breast cancer at 45 and colorectal cancer at 65.

I had a clear colonoscopy in March and will have one annually.

's
Barb

I am also a "Lynch" sister -- tested positive for two of the four sets of genes. Based on our family tree, they were able to pinpoint it to my mother's genes, even though both parents have been dead for many years:

Mother had Stage 1 Endometrial (we assume, since doctors didn't say much in those days) at age 46 when she had her hysterectomy.

Aunt died of ovarian cancer recurrence at 65.

Their cousin died of colon cancer at age 52.

Brother 1 (middle brother) with colon cancer at age 38, recurrence at age 57, died at age 58 (two years ago).

Brother 2 (youngest of the "boys" -- I am the youngest): colon cancer also at age 38 with full colostomy. Recurrence at age 50. Doing well at age 56.

Brother 3 (actually the oldest at 60) with prostrate and skin cancers (although those are low types for Lynch, and doctors feel he, along with our other male cousins, may not have inherited the gene).

Cousin with endometrial and bladder cancer before age 50. Doing well.

Her sister with endometrial at age 48. Doing well.

Third, and only other female cousin, no occurrence (her mother is the one that died of ovarian), but she had a prophylactic hysterectomy at age 40, and doctors say it probably saved her life.

And me, triple cancer at 48.

We are what they call a textbook case of Lynch: multiple early cancers across a generation, not between generations, that are high on the Lynch scale: colon, endometrial, ovarian and bladder, all before age 50, and at least one relative (me and my oldest female cousin) with more than one cancer.

When they tested me, the genetic counselor said she would fall off her chair if we didn't have the gene, but alas, we had what they suspected.

While it doesn't help our generation any more, my cousins and brothers (I have no children) have 9 daughters and 6 sons between them -- all between 17 and 40 -- and many of them have children.

I got the testing for them -- so that they are armed with the information we didn't have until it was too late to help...so that they can watch their and their children's health... so that the girls, in particular, don't go through the four years of "it's just perimenopause," and end up with the drastic surgery and treatment I had to have.

Thanks girls !!!

I know this will help others on this board to start to put the puzzle to gether..I too wish I had had the knowledge in my early 40s ..Will it may very well have been your posts that got me thinking so I thank you !!!

much love

Cheryl

Here's my family, all on my mom's side;

Her mom, colon cancer, dead in her 50's
Her brother, same, dead in his 40's
Her sister, not sure what cancers, but she died the same day as my mom (!)
My mom, endometrial cancer in her 40's, dead at 55 from a heart attack
My older sister, colon cancer first, endometrial cancer, then bladder and kidney (she's tough as nails and walking strong!)
My older brother, colon cancer in his 50's, came back at the resection site, and he's tough as nails too and walking strong!
This brother's daughter, dead at 32 from colon cancer. After her dad survived. Sad, just so sad.
Me, endometrial cancer at 54, surgery on June 2, NFT.
My mother's other sister is now in her late 90's, never any illness at all. She's been a longtime vegetarian and only sees osteopaths and homeopaths. I remember my mom kinda making fun of her, but she's alive, so maybe the joke's on us!

I still love my family, and wouldn't trade my mother for any other in the world! I've been having colonoscopies for 15 years now, every 3 years and have always been clean as a whistle. I've been a vegetarian for over 20 years, and am working towards being vegan now. I do love my cheese, it's a tough thing to give up. And I still can't look at a pork chop without getting all weak in the knees, believe me. I recommend "The China Study", a great book about cancer and diet and nutrition. Amazing statistics in there, and the doctors and scientists involved in the study and the book are from The Cleveland Clinic, so it's not some "new age fruits and nuts" kinda book. Now that I've manifested the endometrial cancer thing, I will have my colonoscopies yearly.

Life is grand, please be well ladies and thanks for starting this thread. Lynch's, bah humbug. I ain't skeered!

davincinanci, I thought my family history was about the worst I had heard, but whew, yours just blew me away. I feel so bad for for your 32 year old niece and her dad.

So many advances have been made now -- all in an effort to save the younger ones what we have gone through. And, sometimes, as in your brother's family's case -- we see it's just not enough!!

There is only one good thing about Lynch, and that is, even though we lose some (my brother and your niece), in general, Lynch has a much higher cure rate and longer remissions. They are not sure if that has something to do with the gene or its just because we are all much more aware of early testing, and careful watching (e.g., more likely to have colonoscopies at an earlier age, not as ready anymore to accept that irregularities in our menstrual cycle is just the onset of perimenopause when we have Lynch in the family).

We also have our "long-livers" too, as with your aunt. My mother had two sisters, one died after a recurrence of ovarian at 65 and the other, although they think she had it (because of her daughters' histories), she had an early hysterectomy due to menstrual problems and lived to be 88! You just never know.

Thank you so much for sharing your story. The only way to help is to educate. I'm not sure the healthy living (vegetarianism, etc.) has that much to do with it; my geneticist said that no matter what you do, if you have the gene, you're going to get something, but I'm willing to bet on anything these days.

I agree on the genetics bit totally; I felt for sure that because of a "healthy" lifestyle that I would be the member of my family who didn't get anything. Well we know that didn't work! When my doctor gave me the DX on my endometrial cancer, she was amazed at my non-reaction, she even wrote it in my chart. Well, you know what? I know who I am, and I know from whence I've come. It wasn't a surprise to me at all, and it didn't make me angry. Disappointed, you bet. But we all do the best we can with what we've been given, and just as you say, we have to bet on anything, with the will to win! Knowledge is power, and it's important to gather as much of it as we can, sift through it, and use what works for us. Thank goodness I love broccoli, and thank goodness a colonoscopy doesn't scare me. Now, if I could just find a source of organic vodka...stay healthy!

Organic Vodka, davincinancy, NOW, THAT'S AN IDEA!!!! I love it!

Cool, I start planting the potatoes tomorrow!

How long before we can drink the organic bloody mary's?