How many with Lynch Syndrome?

[adina91]

Lynch here as well. My father his brother and their father all had it and eventually passed away. My father was first dx in 1970 before I was born and just was not vigilant about getting checked out. He never went to the doctor. He ended up with a metastatic second primary 20 years later and at that point it was 1990 and there was little to be done. I always kick myself for not starting to get scoped earlier, but I think I was in denial and thought I was too young.

When I had my initial resection in November of 2009, there were many indications of a hereditary cancer so I was tested. I have had a subtotal colectomy with an ileorectal anastomosis and a full hysterectomy. I still have my scans every six months, a flex sig to check the rest of my rectum once per year and urine cytology once per year. I still have not had an endoscopy which is recommended every 4-5 years. My younger sister also tested positive for the mutation but has been quite vigilant in getting tested. So she is doing well.

I just had another clean scan last week, so its been almost 4 years since dx and 3 years since my last surgery. My worry is my two young sons at this point.

[Mystic]

Our family has Lynch Syndrome MSH2. It was passed down to my sister and me by our Mom. My Mom died at the age of 87 from kidney failure but had endometrial cancer, renal pelvis cancer, colon cancer and ureter cancer....all cancers from Lynch. My youngest daughter developed colon cancer at the age of 27. That is how our journey with Lynch began. She is doing well now 7 years later. My oldest daughter has Lynch Syndrome but is a previvor. My sister was Lynch positive but passed away last year from lung cancer after a missed diagnosis at a major cancer center. I developed colon cancer at the age of 55. I am doing well thanks to it being caught early as I was undergoing yearly colonoscopies. I also developed sebaceous carcinoma on my face and was diagnosed with the rare subtype of Lynch Syndrome, Muir -Torre.

[mymaria]

Hello! I have Lynch, MSH2 mutation. When I was 43 I was diagnosed first with uterine cancer, then less than five months later, colon cancer. I am feeling great, doing well. I have a 20-year-old daughter (my only child) who tested positive too. She will start her colonoscopies when she's 25. She knows once she's done having children she will need a hysterectomy.
Currently I have a CT scan annually, along with a colonoscopy. I still see my oncologist ever six months for CEA levels and a check up. Endoscopy every three years, plus annual urine cytology. Even though it can be hard emotionally to deal with Lynch, I am glad I know I have it. My doctors have me on a great surveillance schedule and since we know our daughter has it, she will be checked earlier than usual. Keep going to your check ups and report any unusual gynecological symptoms to your doctor.

[surpasstx]

Just learnt today that my wife may have Lynch Syndrome, but with a "variant of uncertain significance." So, it appears we won;t be able to do genetic screening for the kids and her brother. Instead, we will probably have to initiate enhanced surveillance for all the family members and follow the protocol for colonscopies, endometrial biopsies, etc. Has anyone else on the forum been diagnosed similarly?


Ray