So confused - Stage 2b T4aN0M0

[Deb m]

We were first seen by a local oncologist at the start of symptoms. After the diagnosis was made by the gastro doc we were referred to a surgeon and local oncologist. The surgery was done locally, but when we saw the local oncologist, we just had a feeling that what he was telling us was not correct. Everything we have read said something different than what he was suggesting. This oncologist actually wanted my husband to have radiation treatment before starting folfox for colon cancer, not rectal cancer. It was then that we decided to get a second opinion. We live in Kansas, so we traveled to Texas for a visit at MDA cancer center. When we told the oncologist what they wanted to do back home, he about fell off the chair. He said absolutely no radiation!!!!! They staged my husbands cancer differently also! We got our treatments done locally under the supervision of our oncologist at MDA and all our follow-ups for 5 years were done also at MDA. I can't even count the number of trips we made back and forth to Texas, but it was well worth it and I'd do it again in a heart beat if I had to. We got outstanding care there and had we of followed the advice of our local oncologist, I think my husband would of died of radiation exposure to the small intentions.. You don't radiate colon cancer, usually just rectal cancer. He's been ned for a little over 6 years now and is doing great thanks be to God and a great oncologist at MDA.

Praying for you intentions along with everybody on this board,

deb

[dianetavegia]

Deb, it's terrible when we can't trust all doctors! Some will treat you like you're not capable of understanding things so they just say 'fine' when you ask questions.

You have to be your own advocate. Glad all is well with your husband!
Diane

[Deb m]

Yes Diane, I agree. You have to do you own research and trust your gut feelings. This local oncologist even went as far as telling us that the treatments he was advising was universal and was on the same page as MDA. He essentially lied to us and thought we would just take his word. After our first visit to MDA, we had another appointment with this local oncologist and my husband really let him have it! Second opinions are so valuable.

God bless,

Deb

[PainInTheAss]

Another consideration is where the tumor has perferosted. I am a T4b, which means the tumor invaded a neighboring organ. The neighboring organ was my vagina. My Onc told me that typical T4b stats don't really apply to me because there isn't a lot of data on vaginal invasion. I opted to remove uterus and ovaries to eliminate the risk of spread, though there were no signs of spread. Colorectal cancer typically doesn't spread to vaginal tissue. He said I was a wild card. But I wanted to be aggresssive to reduce my risk.

That being said, I, too was terrified of the neuropathy. My Onc explained that the oxi benefits are on a sliding scale based on risk. So, the greater the risk, the greater the benefit. For. my stage, Xelox added a 27% difffernce, so it was a no brainer. I have heard 1 to 2% difference for IIa which is when the risk/benefit conversation kicks in. But a IIb with other risk factors would see an even greater benefit. The big question is whether it would make a difference for you. Even a 3% difference is worth the risk if you are in that 3%, there's just no way to tell which is why one Onc said they don't know which ones it will make a difference for. It is 3 or 4 out of a hundred, but which 3 or 4? If you knew you would be one of them, would you do the chemo? It's a gamble, but that doesn't mean it's a wasted effort or useless. You just won't know either way. 96 or 97 don't get any benefit and 3 or 4 do.

If you are on the fence on doing chemo at all, I would check around for other opinions about doing fewer rounds. I've seen some on this board doing as few as 5 rounds. I did 6, but there are still Oncs recommneding 8 and 12. One patient who got three opinions got three different recommendations, 6, 8, and 12 (this was almost 4 years ago). I did get some neuropathy, but it is very mild and totally worth the peace of mind that I did everything I could to fight this. I already won this terrible lottery getting this disease at such a young age, I wouldn't want to take another gamble on treatment results. I don't have a lot of confidence in my luck at this point.

[NZJay]

T4b here - stage 3 though.

My advice is start with the biggest chemo weapon you have available. You can always discuss reducing it if you suffer terrible side effects.

My logic is simple. If I were to ever suffer a recurrence, I would want to know I did everything possible.

Best wishes.

[PGLGreg]

There is an option I didn't notice among the replies here so far, which is to start with one of the stronger therapies and then, if you start to suffer bothersome side effects, change your mind, and stop the treatment or modify it to reduce those side effects. After all, not everyone has bad side effects -- maybe you''ll be lucky. For instance, I've read here of people starting on Folfox and later stopping the oxaliplatin, continuing on with just 5fu+leucovorin.

I guess there is some chance that any of the standard chemo treatments may help avoid a recurrence. I never had your decision problem, because I didn't ask for other opinions -- just followed my oncologists recommendation for 5fu for a T3 tumor and didn't notice any side effects.

I suppose you've looked around for advice, but here's one more pertinent discussion (from 2013) that I ran across: https://www.oncolink.org/cancers/gastrointestinal/colon-cancer/treatments/stage-ii-colon-cancer-to-treat-or-not-to-treat.