How many less than 50 at dx have Lynch syndrome?

[dontwanttobehere]

I have spent many hours searching the forum and learned so much as I prepare for surgery and the events that follow. Sadly I see that many people are less than age 50 when diagnosed. My question for those folks is 1) did you have genetic testing? 2) did you have a partial colectomy or total colectomy? 3) have you learned anything regarding prognosis that was unique to being diagnosed younger than 50 that influenced your treatment decisions? Thanks in advance for your time to answer.

My first surgeon recommends a total colectomy based on my age (47) and that I have a grandma who died from colon cancer and both parents with many polyps over the year. I met the geneticist Monday and she is suspicious of Lynch but not confident. The results won't be back until after surgery. The surgeon doesn't want to wait until then to operate as my tumor is basically nearly obstructing my colon at this time. I have a second opinion tomorrow but would like more advice from people who have gone through this journey.

I appreciate this group and am certain to have more questions soon.
Paige

[cathy123]

Did they do msi testing on your biopsy from diagnosis? It is not as conclusive as the lynch testing, but my understanding is that if you are msi stable you are unlikely to have lynch. That test was back within a week - because mine was stable the surgeon said they eoukdnt recommend lynch testing even though I was 43.

[dontwanttobehere]

Cathy, I have no idea. That is a great question. I have a copy of everything except the biopsy report so I will ask for that tomorrow.

[horizon]

That's a tough decision.

I got tested and I do not have Lynch syndrome.

[KimT]

I was diagnosed with lynch following my resection at age 32. I had a right hemicolectomy. I did have a second resection a year later because of poor healing at the anastamosis site and had another 8 cm of bowel removed. I chose not to have the total colectomy because I feared for additional complications. My grandfather had a ton of complications following his total colectomy. He was in the clinical trials for the j pouch and was one of the first in the country to have that surgery. I'm sure that since that time, complications are minimized as new techniques become available. I just figured that once it's gone, it's gone and I can't take that decision back. So I opted to preserve as much bowel as possible. I stay on top of my yearly colonoscopies. In the 5 years since I was diagnosed with colon cancer, I've only had 4 polyps. What mainly influenced treatment decisions for me at age 32 was my decision not to have a hysterectomy at the time of my second colon resection. Uterine cancer is a high risk for women with lynch and it is recommended to have a total hysterectomy before age 40. I wanted to preserve my fertility in hopes of having another child. Unfortunately that choice bought me a nasty form of ovarian cancer 6 months later. There went my dreams of another child and instead I got a full regimen of chemo and now permanent neuropathy in my hands and feet. However all that I have learned and went through has paved the way for my family to get tested and make treatment choices. My sister was recently diagnosed with lynch. She had a total hysterectomy in February and a colonoscopy. Her risks are now greatly reduced as long as she stays on top of her colonoscopies.

[peanut_8]

Paige, I think KimT has some good advice.

If I were in your shoes, I would not get a total colectomy at this point. Good grief, you don't even know if you have Lynch Syndrome. If it turns out that you do, and you feel that a colectomy is in your best interest, you can always go back later and do it. It seems to me that your surgeon is pressuring you to make a quick decision, without all the information you need. Have the tumor removed, recover, and then address the possibility of Lynch. Just my opinion of course.

peanut

[Steph20021]

Had genetic testing- no lynch- which surprised everyone because there are lady cancers and colon cancer on my moms side. Im msi stable. They believe mine is inherited but dont know what gene/mutation. I had an emergency subtotal colectomy because i had a blockage. Still have a rectum just no colon. Glad i was able to have my temporary ileostomy reversed. No issues from the healing of my surgery or reversal.

[Ehut]

My GI doc that diagnosed me thought Lynch was a high probability due to the number of polyps found in addition to the cancer. However, after testing for Lynch and a couple other less common genetic conditions, everything came back negative. I decided on a partial colectomy and do not regret it at this point. I would not have a total colectomy unless I KNEW that I had a genetic condition, and even then I may not opt for it.

[Leighann Sturgin]

I was dxd with stage iv cc at 30. I had a strong family history of cc and had ulcerative colitis since I was a teenager, so my surgeon and I thought a total colectomy was the best choice for me. After my cc dxd my aunt, uncle (both dxd with cc in their 30s also) and I were all genetically tested and are positive for Lynch. After my total colectomy cancer spread to my small intestines, I lost most of them too. Now I have Short Bowel Syndrome and am on TPN every night.

[justin case]

There is a lot of good advise about testing for lynch. Butt if you are about to be constricted with a tumor, you can sit around and wait, experience the worst pain you may have ever encountered, and make a decision while so full of morphine, it would be illegal for a surgeon to act upon. I would get rid of the tumor NOW, and since it is only May, you can have the total colectomy later this year, if that is your decision. You will reach your max out of pocket, and the second surgery will be of miniscule expense, if done in this calendar year.
JMHO,
Michael

[sofarsogood]

Paige,
I'm lynch positive too. My surgeon only briefly discussed the possibility of doing a total colectomy, his opinion was to keep monitoring it closely and if any problems came up or I didn't want to do the yearly colonoscopy, then we would talk about it. I also went to Mayo and they set me up with everything they feel I should be doing going forward, so if it ever did come back they would hopefully catch it early.

[teachpdx]

I believe there was another thread on this recently. I also have Lynch and about puked when my surgeon mentioned the total colectomy - not going down that road unless I have to. There'd better be cancer attached to my colon to take the rest of it - Lynch be damned!

[dontwanttobehere]

As always, I am grateful for the advice I am getting here. Had my second opinion today and learned biopsy was MSS which he explained means it appears the tumor is not hereditary. I feel confident based on his input and the information I have learned here to only have a partial colectomy. I messaged my surgeon tonight letting him know so. While I don't look forward to a yearly colonoscopy or worse yet the idea of going through this cancer surgery a second time, I feel I am making the best decision. It sure sucks having to process all this information and make all these decisions during the most stressful time of my life.

[michelle c]

I was under the impression that the follow up for Lynch was a colonoscopy every 12 months so to have a total colectomy sounds drastic to me at this stage of the game. Do not feel pressured. You need a lot more information before you make a decision in my opinion.

[bathroom_tile_blues]

Hey there,

I have been a lurker of this site since my diagnosis in January. I will give you a little background in hopes that it might prove beneficial to you and anyone else that might be going through something similar.

I'm a 31 year old guy who was tested for Lynch Syndrome in the fall of 2014. My brother and I were tested for this because my father battled colon cancer twice about 20 years ago and has had a family history of similar, unbeknownst at the time, Lynch cancers in his family that had proven fatal. My brother was found not to have the gene, but I did have it (MSH2). The next steps entailed meeting with my primary care doctor and a GI to begin the routine testing for Lynch patients. I met with those doctors, discussed any issues I may have had at the time (none) and scheduled my first endoscopy and colonoscopy (and blood work, urine tests, etc.). Ultimately, everything came back normal with the exception of my colonscopy. The colonscopy identified a 30mm polyp/tumor/whatever you want to call it on my ascending colon. They biopsied it and found it to be cancerous and away we went. I met with a surgeon a few days later and he proposed three options: 1.) partial colectomy (site of tumor/polyp/bs) 2.) total colectomy (leaving about 6 inches) and 3.) total removal and installation of J-pouch. The doctor gave percentages of likely recurrence for each procedure with the partial having the highest. I opted for the total colectomy based on my father's experience. He had the same cancer in the same location, but it came back where it ultimately resulted in something close to a total colectomy. From there we had more blood work and a CAT scan that came back "pristine". My CEA level prior to surgery was 1.2.

I went in for the surgery less than a week later and it was performed laproscopically. I was discharged prematurely after about 36 hours that resulted in some vomiting and pain, but was readmitted 24 hours or later. Since then, my recovery has been pretty good. I was up on my feet and walking a couple of miles about 2 weeks after surgery. I was initially having about 5-6 bowel movements a day that have slowed down to about 4 on average.

The pathology report came back identified the cancer as Stage 3. It had penetrated to the submucosa but not beyond any of the walls. The colon itself looked clean from the outsides and the margins were clear. 31 lymph nodes were pulled and unfortunately, managed to get itself into 1 of them (resulting in the stage 3 diagnosis).

The oncologist went back and forth with whether or not we should proceed with adjuvant chemotherapy and we finally decided to go with it. We also received a second opinion from Sloane that agreed with this plan of attack. So, I'm currently finishing up round 3 of 12 on Folfox. It kind of sucks for a few days, but it has been mostly tolerable thus far.

In summary, I know a lot of people are against an aggressive plan like a total colectomy, but I've honestly found it to be pretty easy to deal with. I live around Chicago and have tested my new bowel with all sorts of "chicago" food and have not really had an adverse reaction. The biggest change is the more frequent bowel movements which aren't so bad! I never feel bloated!

I hope this story helps you and anyone else out there that is in a similar predicament. I'm happy to help and share any information I can.

P.