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Lynch Syndrome

Posts: 2
Joined: Dec 2011

After being diagnosed with Colon Cancer (at age 31) I ended up being diagnosed with Lynch Syndrome (at 32) as well. I am wondering if anyone knows of any online support groups for those who have had hereditary cancers. It is believed I was given the Lynch mutation from my mother, who passed away at age 50 when I was 23. I feel so alone; my sister doesn't have the mutation, nor does my grandmother. They are exploring the possibility it came from my grandfather.

Brenda Bricco
Posts: 579
Joined: Aug 2011

I am so sorry that you are where you are. I am not familiar with Lynch Syndrome so I googled it to find out what it was. I then googled support groups for LS and found one that seems like it fizzled (last posts was in 2009). I am assuming they found this site and never looked back since there are so many on here battling colon cancer whether they are the patient or a caregiver that want to help. Stick around and I know someone will have some more info for you. Until then you can close your eyes and feel the big hug I am sending you. God bless you.

Linda Lee
Posts: 7
Joined: Nov 2008

Go to www.lynchcancers.com for information and they have a FACEBOOK page with almost two thousand survivors and previvors and individuals who care for them.

Being diagnosed is a blessing. The genetic is one of the very few in which prevention measures are available and our generation is living far longer than any generation which came before us.

Every single one of us tested has been diagnosed. Of this generation of brothers and sisters over 50, all positive and all have had cancers and survived.

Of the next generation of those 40 and under, two have tested positive, four have not tested. Of those none have had cancers, but have had polyps removed.

We are truly lucky!

Warm regards, Linda

Posts: 1
Joined: Dec 2011

I am 29 years old and was diagnosed with Lynch Syndrome in February of this year. I got the lynch gene from my dad. He has Lynch and is currently battling his second round of colon cancer. My sister and I both got tested, I tested positive and she was negative which was good.

My dad had cancer 3 years ago and the doctors didn't know what lynch was so they just removed part of his colon. He was diagnosed with stage 3 colon cancer this year and is having serious problems. We found out about Lynch from his niece who lives in Dallas found out about it and was diagnosed with Lynch as well.

If Lynch would have been more well known then my dad could have opted to get his colon completely removed the first time he has colon cancer and he wouldn't have cancer today.

When I was diagnosed in February I got a colonoscopy a week later at 28 years old and they found a precancerous polyp the size of an egg that would have to be surgically removed. The pathology reports came back non cancerous from the little that they took from my colonoscopy but because my growth was so big they wouldn't know for sure if it was cancer or not until they cut it out of me.

I had the option of getting my entire colon removed or just the section where the growth was. I opted to get my colon completely removed because I have lynch and there was a very high chance that I would get cancer again. My surgery was 6 hours long and I stayed the night in the hospital for only 2 nights. My recovery was pretty rough and I missed work for about 5-6 weeks but it was well worth it. It wasn't nearly as bad as I thought it would be. My labs came back cancer free!

Your body takes a while to get used to the new plumbing and my doctor told me it could take up to a year for my body to adjust. I have bowel movements about 3 times a day! I did that before I got my colon removed so no big deal for me! I had read and a genetic counselor told me that I could be using the restroom 20 times a day and that never happened! Right after my surgery for a week or 2 I was going 10 times a day and then it gradually got better and better and now I feel I'm back to normal. My stomach makes some funny noises sometimes but other than that I don't notice a lot of changes!

If you have a long history of colon cancer in your family then you really should look at getting tested for Lynch Syndrome, it can save your life and give you peace of mind.

Anyone who has any questions about my experience with lynch and my total colectomy please feel free to ask, I'm here to help!

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