Positive Lynch Syndrome Results

[DeniseBurkett]

One thing I read said 3-5 percent are diagnosed with Lynch Syndrome. I guess I hit the gene pool lottery.

[jhocno197]

[StephenWinsToday]

I am lynch+ as well with stage 4 crc. At first the lynch thing devastated me...but now I'm so thankful for it. Because of it, my cancer is msi high, as is yours, and that opened the doors to the immunotherapy world I'm in now. I have had a complete reversal of where I was with the drug I'm on now. With proper screening, lynch isn't too bad, lol. Best of luck. Feel free to look up my trial drug update....just search Atezolizumab.

[teachpdx]

I also have Lynch AND there are some positive side effects. Those with Lynch are less apt to have metastasis but more apt to have a NEW cancer. This allowed me to decline some of my post surgery treatment because I was less concerned about metastasis. There are other issues butt thought I'd point out a positive. Best of luck with your treatments.

[DeniseBurkett]

Thank you for your information! Very helpful! I will look into all of that. I didn't know about any of that!

[DeniseBurkett]

Do you believe Lynch shortens life expectancy?

[JAZZToo]

20% of people with Lynch Syndrome never develop any cancer so their life expectancy is not affected by it. Persons with Lynch Syndrome following the recommended preventive testing and scanning may catch an incipient cancer at its earliest stage or as a precancer when it is easiest to treat. Then there are those like me who have Lynch Syndrome and bad luck will have a shortened lifespan. My father died of pancreatic cancer, so I was getting an MRCP every year to check on my pancreatic cysts to see if there was any change in character. However, my Stage IV pancreatic cancer developed within a year between MRIs. I am now 18 months into my battle, have had a liver embolization of my sole liver met and am now looking into immunotherapy clinical trials.
Leslie
Lynch Syndrome PMS2 mutation
2014. Stage IV Pancreatic Cancer
2003. Stage III Colon Cancer
1995. Stage 1 Endometrial Cancer

[DK37]

Just reposting this post I authored "THE FACES OF SUCCESSFUL COLORECTAL CANCER IMMUNOTHERAPIES: VOL. 1" - it focuses on CRC but really is applicable to multiple types of MSI-high (& Lynch) based cancers. If I were a Stage IV Lynch patient, I would do whatever it takes to get onto a PD-(L)1 inhibitor trial (there are multiple ones across the country), like StephenWinsToday did.

http://adventuresinlivingterminallyopti ... ies-vol-1/

-DK