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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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lindyruss | @lindyruss | Jan 21, 2025
In reply to @bellsina71 "I was diagnosed with Lynch syndrome after my brother died at 32 of colon cancer, and..." + (show)
Profile picture for bellsina71 @bellsina71

I was diagnosed with Lynch syndrome after my brother died at 32 of colon cancer, and then they found out I had colon cancer. We had a mutation in our mh-6 gene that they had never seen in any other family at that time, and did extensive genetic testing on my mother's side, mostly everyone has that mutation on my mom's side. I have had a complete proctocolectomey because of colon cancer at 38, and they did I complete hysterectomy at the same time because they said I would have uterine cancer by the time I was 50 if they didn't, and now I have small bowel cancer at 52, and just recently diagnosed with MAC. The main thing with Lynch syndrome is that you need to be watched extremely carefully! I can't stress that enough. I have always taken precautions, and done all the testing, had EDG and sigmoidoscopy done at regular intervals, once a year on the sig, and every 3 years with the EDG, and I wish that they were doing the EDG every year because they would have caught this cancer far earlier!! I have surgery tomorrow morning, Thursday morning. I think I'm just going to pull an all nighter because I have to be there at 5:30 in the morning! Lynch is rare, but there is people with it, and some people will get maybe a Cancer and then there's others like me, that get more than one. Like I said before being proactive and being watched like a hawk is going to pay dividends when it comes to your health and happiness and well-being!! Genetic testing has come so far since they did the first genetic test on myself 14 years ago. They first thought that our family had a mutation in 2 genes, but it turned out to be only one, and that was only recently discovered. It is amazing how far they've come with genetic tests!!!
If you have any questions I'd be happy to answer them.

Angela

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Did you do any chemo after your small bowel cancer?

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lindyruss | @lindyruss | Jan 21, 2025

I recently had an emergency bowel surgery/tumor is malignant and 12 inches of my colon were removed.
I also tested positive for Lynch Syndrome.
It is scary, and does make you feel so alone. I had a huge pity party and was mad at my body that I have taken care of for 70 years too! Looking for the best treatment and care to handle the future living with this disease.
Please reach out to others, friends, family, church members, anyone you can talk to...it does make a difference to VENT to someone that will listen. Huge hugs.

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bea1972 | @bea1972 | Jan 11, 2025
In reply to @alake "Pretty sure my results are saying this. No one can follow up with me because it’s..." + (show)
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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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Hi,

I found out 5 years ago I have the Lynch gene. I started with brain cancer in my 30s (now remission), and currently have colon rectal cancer (I'll be 53 soon).

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alake | @alake | Jan 10, 2025
In reply to @colleenyoung "@alake, I hope you saw the helpful posts from @geno77 and @patsyh. You may also be..." + (show)
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@alake, I hope you saw the helpful posts from @geno77 and @patsyh. You may also be interested in these discussions related to Lynch syndrome:
- https://connect.mayoclinic.org/search/discussions/

How did your meeting go with the genetic counsellor? Do you have Lynch syndrome? Did you start chemo?

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No Lynch, thank the lord. Office staff read my results wrong. Started Chemo on this past Tuesday and it’s rough. I did not see posts u fortunately. Just trying to rest with Chemo start.

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Colleen Young, Connect Director | @colleenyoung | Jan 10, 2025
In reply to @alake "Pretty sure my results are saying this. No one can follow up with me because it’s..." + (show)
Profile picture for alake @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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@alake, I hope you saw the helpful posts from @geno77 and @patsyh. You may also be interested in these discussions related to Lynch syndrome:
- https://connect.mayoclinic.org/search/discussions/

How did your meeting go with the genetic counsellor? Do you have Lynch syndrome? Did you start chemo?

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1 reply
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geno77 | @geno77 | Jan 1, 2025
In reply to @alake "Pretty sure my results are saying this. No one can follow up with me because it’s..." + (show)
Profile picture for alake @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, 2025
In reply to @alake "Pretty sure my results are saying this. No one can follow up with me because it’s..." + (show)
Profile picture for alake @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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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, 2025

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
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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)
Profile picture for johnjustice42 @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)
Profile picture for johnjustice42 @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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