Stage 2 Colon Cancer, Lynch, and doing Chemo

[Redsolocup]

Hi Everyone, I just read through a LOT of posts and you all are wonderful for sharing and made me feel much better and less alone. Great site! I want to post my story and get any and all comments as i am struggling with not only the decision to do Chemo or not, but the vagueness of my onc doc. (see, I picked up some of the lingo!)

I had terrible constipation, and was finally talked into a colonoscopy. I am 51. I have never been to the Doctor for anything more than Sinus Polyps and allergies in all my years. Fairly healthy, and never thought much about being otherwise. The Colonoscopy changed all that. I had a complete blockage and they wanted to do surgery right away. did that, healed nicely, its been 6 weeks. the biopsy said Stage 2, No lymph nodes infected.

I met with the Onc doc around Dec 6 or so. He said the initial biopsy said I might have Lynch. He made it sound like this makes things worse. He said he wanted to send it off to some specialist to find out. It took up to last week to get me back on the phone, and the story changed a bit, or I misunderstood him initially. either way, he now says the Lynch actually lowers my chances of recurrance. a good thing. IF I have it.

IF I have it? WTH? I thought that is what he sent the second biopsy for. he said no, he wanted to see what my chance of recurrence is. So he says I MIGHT have Lynch. And he wants me to do chemo. Says without chemo, I have a 11% chance of recurrance. With chemo 6%. I have seen no such numbers on this board after reading quite a bit.

The other issue bothering me is he mentioned after 8 weeks, they just do not know if chemo helps or not. Well, I have been hanging around waiting, my family is going nuts because I am not feeding them updated info ( did not have any yet) and now I MIGHT have lynch, Chemo MIGHT not be effective, and he wants a decision TODAY. Well, I am sleeping on it, sortof. I am really just reading this board and hoping I get some good insight from someone on this post by morning.

He is recommending a 6 month treatment every other week ( the 12 treatments I suppose that everyone mentions) if 5Fu, Leukovorin, and oxalipltin.

Did I not read some of these drugs are not good for people with Lynch? this is tough for me because I don't actually know if I have Lynch or not, and the schedule of the holidays and delays have backed me into a time pressure of making a quick decision.

ALL comments and feedback are appreciated. I will read them in the morning. (i hope) . good night!

Red

[elise]

I was in the exact same boat. The genetic testing took so long I actually got the results as I was finishing my 6 months of chemo! I started chemo about 8 weeks after surgery because they couldn't make up their minds... blah blah blah!

My onc said that doing chemo would increase my chance of 5 yr survival by 1.5-2%. I was ok with that. I could picture the 100 people in a row and the 2 people taking a step forward. They are alive because they endured chemo.

In the end, I tested negative for the common genetic markers, though the genetic team is looking at MAP as well now. As I understood it, overall, you'd rather be negative.

Hopefully you get answers soon

I can tell you I don't regret doing chemo for my stage 2.

Elise

[Brocken]

I also was diagnosed with stage 2 T3N0.. I opted to do the chemo as well. I have no regrets. It was doable though not the most pleasant thing in the world. If I were to have a recurrence, I will have known I did everything I could to prevent it. Good luck with whatever you decide:)

[chp]

I am also 2a. I know what you mean about the test results taking so long, because of waiting on test I didn't start chemo untill exactly 8 weeks to the date of my surgery. I would have liked to have started earlier, but it didn't happen. I decided doing chemo would leave me with no regrets about what I could have done. I'm on round 3 of Xeloda--oral 5fu -- and so far I have tolerated it very well. Good luck with your decision!
Cathy

[Redsolocup]

Thanks for the vote of support and the stories. It looks like if I do the chemo, it will be exactly 8 weeks before my first treatment. this is frustrating, if we don't know how effective it is at that point. but I also realize that right now, there is not much that can be done. I should have been more proactive about getting answers sooner.

[mymaria]

I responded earlier to a similar thread regarding this issue. I was stage 2A, 54 negative lymph nodes, grade 3 and suspected Lynch. (I had uterine cancer four months before my diagnosis, and these are two Lynch cancers plus I had a family history.) I received my HNPCC test results after I stopped chemo (I was positive.) I did three rounds of chemo and then consulted with a specialist at the Cleveland Clinic. Based on the info he told me, I decided chemo was not going to benefit me. And yes, typically Lynch patients have an overall better survival, based on current research. I don't regret my decision and even if I happen to have a recurrence in the future, I will not beat myself up over it and question if I did all I could. My oncologist was not well educated on Lynch. My new oncologist specializes in Lynch and assured me at my first visit he would have made the same decision I did for his wife or mother if they presented with my exact history.

[Redsolocup]

Mymaria, or anyone out there, how do you go about looking for another oncologist? Insurance company? yellow pages? it seems mine is/was in no hurry and I am insulted by that, but I feel they have my back against the wall because I have no time left. after next week, I am past the 8 weeks recommended to get started.

[soccermom]

I am also a stage 2a colon cancer. As I was told by my oncologist they look for a few high risk traits to see if chemo would benefit. Perineural invasion , lymphvascular invasion, T4 tumor, and grade. I had some high risk factors so there was NO DOUBT at all. I had the full folfox treatments. Went 9 rounds with the oxi and the rest 5 fu. Made it through. It wasn't fun by any means but I survived and had clear scans 1 year out just a few weeks ago. I have a very well respected oncologist so I trust his judgement and feel good about my decision. I did test negative for lynch even with a very strong family history. Hope I can be of some help!

[WorriedWife]

My hubby was stage 2b, dx 6 months ago. He chose not to do the chemo and doesn't regret his decision at all. He believes that if it's coming back, it's coming back with chemo or no chemo. Good luck to you. Sorry you have to be here.