1. < Colorectal Cancer

Lynch Syndrome & Colon Cancer

Posted by candacesusan1958 @candacesusan1958, Feb 24, 2023

Good morning, Iew to this discussion platform. Going thru the diagnostic testing for colon cancer. I'm a prime candidate as both brothers passed from colon/liver cancer. As well, my father.
My colonoscopy got rescheduled due to a major blizzard....so I'm left to wonder and worry ...I had uterine cancer in 2016.....so ...
The misery of gas, catapulting to the bathroom, extreme fatigue, and a new development of abdominal pain are quite distressing.
So far, no sign of blood, but I have developed a sever B12 deficiency. It may not directly be related to colon cancer....
Just feeling sick, alone, very isolated.
Thanks for listening 🙂

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geno77 | @geno77 | Jan 1 2:25pm
In reply to @alake "Pretty sure my results are saying this. No one can follow up with me because it’s..." + (show)
@alake

Pretty sure my results are saying this. No one can follow up with me because it’s a holiday. Genetic meeting Thursday. Feel like this is worse than getting rectal cancer that I was working on beating here in the future. Chemo to start momentarily after insurance approves. 45yr old

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My brother and I both diagnosed with Lynch. My brother passed away in 2023 at 78 from kidney cancer. All first cousins on my father's side except one had the mutated gene. Last year I was diagnosed with colon cancer (age 76) and had a colectomy. Fortunately my lymph nodes were clean so no chemo, but on a short leash for continued monitoring. Also, I prostate cancer dx in 2007 but so far so good after prostatectomy followed by radiation and luprone injections.

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patsyh | @patsyh | Jan 1 8:18am
In reply to @alake "Pretty sure my results are saying this. No one can follow up with me because it’s..." + (show)
@alake

Pretty sure my results are saying this. No one can follow up with me because it’s a holiday. Genetic meeting Thursday. Feel like this is worse than getting rectal cancer that I was working on beating here in the future. Chemo to start momentarily after insurance approves. 45yr old

Jump to this post

I was diagnosed with Lynch Syndrome 26 years ago. A colonoscopy at that time when cancerous polyps were removed precipitated the need for genetic testing since numerous paternal relatives had been diagnosed by the Mayo Clinic. Since then I have had two partial collectomys and finally chemo and radiation and APR surgery two years ago. The Mayo has great support for this syndrome and vigilance is crucial. I consider myself very fortunate and hope to remain cancer free. I am 75 and have a good quality of life despite all the treatment. Best of luck to you!

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alake | @alake | Jan 1 1:55am

Pretty sure my results are saying this. No one can follow up with me because it’s a holiday. Genetic meeting Thursday. Feel like this is worse than getting rectal cancer that I was working on beating here in the future. Chemo to start momentarily after insurance approves. 45yr old

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4 replies
swidergal | @swidergal | Dec 5, 2024
In reply to @johnjustice42 "My son was recently diagnosed with colon cancer, after some testing we found out he has..." + (show)
@johnjustice42

My son was recently diagnosed with colon cancer, after some testing we found out he has Lynch Syndrome. One doctor wanted to remove his whole colon, but on a second opinion this doctor just wanted to remove only about 12” off the right side. So of course he went with the second opinion and had it removed in September. She got enough for clear margins along with about 12 lymph nodes (none cancerous), after the pathology report we found out it was stage 2 and had only made it to the 3rd lining of the colon! Yeah!! No kemo or radiation is necessary! We are very blessed and God is good! So I guess my question is if anyone has run into this situation in the group? My son is only 26 and has a long life in front of him and if anyone has any suggestions especially from people that have dealt with this would be most helpful. Thanks,John

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I too have Lynch Syndrome and have had endometrial, and colon cancer. I am now dealing with esophageal cancer so talk to your Dr about having an EGD to make sure your esophagus is clean. Good luck!

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nrocpop | @nrocpop | Dec 4, 2024
In reply to @johnjustice42 "Thank you, my wife and I are getting tested to see if we were carriers. We..." + (show)
@johnjustice42

Thank you, my wife and I are getting tested to see if we were carriers. We will definitely make sure he follows up with any gastro issues!

Thanks again

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I forgot to say that my husband's family has all been given EGD's as well as colonoscopies. Maybe that is a good idea too

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johnjustice42 | @johnjustice42 | Dec 4, 2024
In reply to @nrocpop "Definitely follow doctor recommendations about follow-up colonoscopies. Don’t skip them. Also, take any symptoms in the..." + (show)
@nrocpop

Definitely follow doctor recommendations about follow-up colonoscopies. Don’t skip them. Also, take any symptoms in the digestive tract right to a gastroenterologist that know about Lynch syndrome. It has also popped up in the small intestine and stomach of my husband’s family members (and also uterus, bit that applies to female family members, of course). Lynch Syndrome can make cancers grow faster. My husband’s mother has lived to a nice old age with Lynch Syndrome, you just have to keep up on it.

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Thank you, my wife and I are getting tested to see if we were carriers. We will definitely make sure he follows up with any gastro issues!

Thanks again

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1 reply
nrocpop | @nrocpop | Dec 3, 2024
In reply to @nrocpop "Definitely follow doctor recommendations about follow-up colonoscopies. Don’t skip them. Also, take any symptoms in the..." + (show)
@nrocpop

Definitely follow doctor recommendations about follow-up colonoscopies. Don’t skip them. Also, take any symptoms in the digestive tract right to a gastroenterologist that know about Lynch syndrome. It has also popped up in the small intestine and stomach of my husband’s family members (and also uterus, bit that applies to female family members, of course). Lynch Syndrome can make cancers grow faster. My husband’s mother has lived to a nice old age with Lynch Syndrome, you just have to keep up on it.

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Sorry for the typos

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nrocpop | @nrocpop | Dec 3, 2024
In reply to @johnjustice42 "My son was recently diagnosed with colon cancer, after some testing we found out he has..." + (show)
@johnjustice42

My son was recently diagnosed with colon cancer, after some testing we found out he has Lynch Syndrome. One doctor wanted to remove his whole colon, but on a second opinion this doctor just wanted to remove only about 12” off the right side. So of course he went with the second opinion and had it removed in September. She got enough for clear margins along with about 12 lymph nodes (none cancerous), after the pathology report we found out it was stage 2 and had only made it to the 3rd lining of the colon! Yeah!! No kemo or radiation is necessary! We are very blessed and God is good! So I guess my question is if anyone has run into this situation in the group? My son is only 26 and has a long life in front of him and if anyone has any suggestions especially from people that have dealt with this would be most helpful. Thanks,John

Jump to this post

Definitely follow doctor recommendations about follow-up colonoscopies. Don’t skip them. Also, take any symptoms in the digestive tract right to a gastroenterologist that know about Lynch syndrome. It has also popped up in the small intestine and stomach of my husband’s family members (and also uterus, bit that applies to female family members, of course). Lynch Syndrome can make cancers grow faster. My husband’s mother has lived to a nice old age with Lynch Syndrome, you just have to keep up on it.

REPLY
2 replies
johnjustice42 | @johnjustice42 | Dec 2, 2024
In reply to @sophie46 "I am sorry your son has had to go through this at such a young age...." + (show)
@sophie46

I am sorry your son has had to go through this at such a young age. I too had colon cancer in 2007 and I suggest that your son avoids eating red meat and processed food. There is evidence to avoid these foods and my cancer has not returned, hopefully it won't.

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Thank you so much, I will pass that along to him. And praying for both of you for cancer free lives!

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Sophie46 | @sophie46 | Dec 2, 2024
In reply to @johnjustice42 "My son was recently diagnosed with colon cancer, after some testing we found out he has..." + (show)
@johnjustice42

My son was recently diagnosed with colon cancer, after some testing we found out he has Lynch Syndrome. One doctor wanted to remove his whole colon, but on a second opinion this doctor just wanted to remove only about 12” off the right side. So of course he went with the second opinion and had it removed in September. She got enough for clear margins along with about 12 lymph nodes (none cancerous), after the pathology report we found out it was stage 2 and had only made it to the 3rd lining of the colon! Yeah!! No kemo or radiation is necessary! We are very blessed and God is good! So I guess my question is if anyone has run into this situation in the group? My son is only 26 and has a long life in front of him and if anyone has any suggestions especially from people that have dealt with this would be most helpful. Thanks,John

Jump to this post

I am sorry your son has had to go through this at such a young age. I too had colon cancer in 2007 and I suggest that your son avoids eating red meat and processed food. There is evidence to avoid these foods and my cancer has not returned, hopefully it won't.

REPLY
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