Hi, I went in for my genetic counseling appt. and was suprised to learn that instead of testing for BRCA1/2 I was going to be tested for Lynch Syndrome. I hadn't heard of this before. Lynch typically runs in families causing ovarian, uterine, colon, stomach cancers. All of these cancers run rampant in my family.. I am now scheduling a hysterectomy at Mayo. After a second opinion from a gynocologic oncologist I have made my decision. Thanks for all of the input on this board. I really appreciate you. Anybody else with Lynch Syndrome?
I am a confirmed Lynch Syndrome person. It is good that you are getting tested. It will help you, and most importantly, it will help the younger members of your family recognize the need for checkups and to listen to their bodies at a much younger age than many of us do.
The good news about Lynch: most of us have a much higher "cure" rate and much longer remissions than the average cancer population.
Another confirmed Lynch 'sister.' Four months after I had a total abdominal hysterectomy for uterine cancer, I had a colonoscopy and colon cancer was found. Both my grandmother and dad died from colon cancer. I was 43 when diagnosed both times. It really is much better to know you have it-that way, your relatives can be put on alert and you can have much closer survelliance.
Isn't that something? Did you know about Lynch when you had uterine cancer and the colon was in the family history or was it after your colon diagnoses? I hope you are doing well. I am scheduled for my hyst. on January 21.
When I was diagnosed with uterine cancer at the age of 43 my sister, who is a nurse, thought that was way too young. She did a bunch of research and actually brought it up to my gyno the day of my surgery. He didn't seem that familiar with it but said he didn't think that was something I had to be concerned about. Fast forward a few months........the same sister had been bugging me to get a colonoscopy because of our family history. I started researching myself and read how there's a connection between uterine and colon cancer. I never in a billion years thought I'd wake up to hear the doctor telling me I had colon cancer!
I think the gynos need to get educated about Lynch and talk to their patients-especially if there's a history of colon cancer in their families-and encourage women to get colonoscopies. My philosophy would be to have any woman under the age of 48 diagnosed with uterine cancer to also have a colonoscopy. If I would have had a CT scan before my hysterectomy, the colon cancer would have shown up.
There's new info coming out every month it seems about Lynch. But I still believe the gynos need to get better educated.
Very good information you give-for uterine cancer patients to have colonoscopy. My gyno said nothing about Lynch Syndrome either and she knows my great grandmother and aunt died of colon cancer. All she spoke of was BRCA1/2 . It was my geneticist who told me of Lynch. Thank goodness for the internet and doing our own research.
Yes, anal cancer is considered part of it. However, more importantly, is if the uncles and cousins are from the same side (mother's or father's) of your family. Lynch Syndrome goes across a generation, meaning siblings and cousins or uncles, aunts and parents. Another tipoff is early cancers (under 50 for female reporductive cancer and under 40 for colon cancers). There is another type of colon cancer gene called familial colon cancer, and that is up and down generations, such as grandfather, father and son, rather than across generations like Lynch.
Well we don't meet the age criteria... I am 57 , my cousin is 55, but it does follow the same side... (paternal) and it was my dad's brothers that had the colon cancer. Guess I'll put that on the list of things to check this year.