Just got the call, tested positive for Lynch.

[BeansMama]

Completely bummed, and worried about my kiddo carrying the mutation too.

Anyone know if there is an age they have to hit before they test for it?

You know what they say, knowing is half the battle.

[bitchslapped]

Ethically the geneticist told my DNL, they don't like to test til age 18 to avoid burdening a child. So his mom had the pediatrician order the test instead for my 8yr old grandson because she just had to know. Though results did show a genetic abnormality, it was somewhat inconclusive because of his young age, so he will need to be retested when he is older.

Being Lynch positive is a blow when initially told, but in ways can be perceived also as an avenue to more regular testing than others may normally be allowed beyond the standard of care to catch any other primary cancers one might get. It does not mean that your children will automatically have Lynch syndrome, but certainly will need to be tested @ some point in time.

IMO having my young grandson tested did not reveal anything more than what we already knew: Colon cancer is in the family before 50 yrs of age (his grandpa, uncle). His dad is Lynch positive (not a cancer patient) & so my grandson will need to be retested & monitored when he is much older, which they would have done anyway.

They do subscribe to clean, organic living as closely as they can to reduce risk factors considering the family history...and now the genetic component only reinforces their commitment to that belief. Nothing has really changed other than my grandson will never be allowed to eat a hot dog in their presence.


Best Wishes
BS

[lynch2015]

My doctors and genetic counselors have said at 18 we should test our kids. I have 4 girls and would really like to know before they are 18. The reasoning I was given for not testing until 18 is because they wouldn't do any surveillance at young ages anyways. However, if my children are 18, they can choose whether or not to be tested. In my opinion, it's better for them to know so they can (and I can help) keep up their surveillance.

[NateA]

On a positive note, Lynch peeps are doing pretty good in recent immunotherapy trials!!

[BeansMama]

Thanks everyone! My kiddo is 9 so probably too early to test, I may be able to get her screened earlier as she has endocrine issues already. That is my big worry, she's already medically complex, hoping we aren't going to add Lynch to the list!

[BeansMama]

On a positive note, Lynch peeps are doing pretty good in recent immunotherapy trials!!

That is interesting, I wonder if testing positive will open up some different avenues of treatment. One can hope I suppose

[jortego128]

Absolutely it does. Lynch syndrome carries a better prognosis than standard colon cancer and has also been shown to respond to PD(L)1 antibody immunotherapies.

You should take this news as a positive development!

[Cathie]

Forgive my ignorance but what is Lynch?

Cathie

[BeansMama]

Forgive my ignorance but what is Lynch?

Cathie

Lynch is a genetic mutation that predisposes people with the mutation to certain types of cancer. It basically increases the odds and it can show up earlier.