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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

paul scott

To Chemo or not to Chemo that is the question.

I've been diagnosed as T3 M0 N0 which means it hasn't spread,or doesn't seem to have anyway. I'm feeling as fit as a fiddle 3 weeks after my operation, way better than I did 6 months ago when I didn't know I had cancer.

I actually feel lucky, for someone who has had cancer (and hopefully now doesn't). It could have been far worse, and I should live a good few more years yet. Which I easily might not have done if it hadn't been picked up for another year.

So, now the question is do I have 3 months Chemo or not. My surgeon/consultant says he would go for "not" as in my case the difference is pretty small, and I'm tempted to agree with him.

I was wondering about attacking the recurrence problem from the other end. The NICE recommendations are 6 monthly CEA checks and an annual CAT scan.

It appears to be possible to have CEA and other cancer checks more regularly than that ; possibly privately ; the idea being that if it does reoccur the sooner it is diagnosed the better the chances.

Anyone have any experience of such ?

Regards as ever, Paul.

Liriodendron345

Hello @Paul, I’m sure that others will come along with their experiences but just wanted to say that CEA levels are notoriously unreliable in some people as indicators of tumour activity. I believe about 20% of us do not show raised levels - myself included. Mine is always very low! Good luck with your decision making, Kim

Sandy10

Hello @Paul. I was diagnosed same as you T3N0M0 November 2016. I wasn’t even offered chemo, at the time I sighed a sigh of relief and felt very lucky it had been caught early. 18months on I feel a little nervous that a didn’t have some “mop up” chemo but having read numerous articles, and the posts from the lovely folks on this forum I think not having it makes sense as there is not much advantage at our stage. I have had scans every six months all clear (more huge sighs of relief!)but after next one in September/October the two year point, I expect to go to yearly ones. I have had cea checked too but couldn’t tell you my figures, no idea! All the best with your decision making and recovery. :x::x:

mr rusty

Hi @Paul I have posted this link before. www.mskcc.org/nomograms/colorectal I was T2 N0 M0 downgraded from T3 N0 M0. Memorial Sloan Kettering cancer center in the US collect raw data and present it as nomograms you can test various data inputs yourself. This isn't a "study", it's just raw data from around 120,000 patients. Try different scenarios with/without chemo. You will find the outcomes with/without chemo at stage 2 is very marginal. In the end I wasn't even offered it, but I would definitely refused at N0 and probably even N1 if only 1-2 nodes involved. It's your choice.

Seashells

Hi @paul scott I fully understand your dilemma and my take on it is you are not a statistic, you are an individual and your cancer is too. Before you make a decision you can ask for a copy of the histology report(s) and reports from any recent scans. That way you will have a fuller picture of what your team are basing their advice on. Hopefully this will reassure you but it may flag up details which raise further questions. It is better to make an informed decision than find out later that there were details you were not aware of. Well that's my take on it but others would just trust their team. Your choice of course. Good luck with whatever you decide.

Catlover

Hi @paul scott my husband was found to have a T3 N0 M0 tumour in January following an emergency operation. His oncologist said that she was not going to offer chemo as the disadvantages outweighed the advantages. I, too, am very nervous that it is the right decision but there are numerous people on this forum who have been at the same staging and also not been offered it. I have no idea what his cea levels were before or after surgery nor the grading of the tumour- but I think it was moderate. At the time of the meeting with the oncologist I did not know about cea levels and the grading of the tumour so did not ask the questions!! You seem to be really informed and folks on this forum have loads of good advice. Please keep me informed as to whether you do go down the route of have more frequent scans. All the best with your recovery. Thanks for posting that @mr rusty - I will try to Find out what hubbies cea levels were before his operation. Perhaps his GP will know from the oncologist report? :x::x:

sweetcheeks

Hi @paul scott , Geoff’s was T2 N0 MX , he was never offered any chemo has cea levels every 12 weeks , due his first annual scan in 2 weeks, personally I’m already a wreck , as I feel a lot could of happened in a year, Geoff’s cea level has remained at 1 , but when I asked what it was before surgery they didn’t know , and I have never had a straight answer to the MX!!!
Good luck with making your decision
Tracey :x::x::x:

pollypops

Hi @paul scott, I was t3m0n0 and wasn't offered chemo, had my two year ct and colonoscopy in November which was clear. I am not being offered any more CT scan now. Colonoscopies for life though (yikes!).

I did have MSI high cancer though, which they know for sure chemo is not helpful for at this staging, and a subtotal colectomy, so v. radical surgery.

I have CEO tests every 6 Months but because they didn't bloody check my CEO whilst I actually had cancer it's potentially useless!

It's worth checking with your nurse what your CEA was prior to surgery, and when/how often colonoscopy and CT scans will be :x:

Clancy

Hi @paul scott, I have had a bowel resection and two liver resection and have never been offered mop up chemo, despite me asking for it. My oncologist tends to give it when it recurs prior to surgery. He has quoted to me that studies have shown that mop up doesn't make much difference.:x::x:

belinda66

My diagnosis was same as yours @paul scott but I was offered chemotherapy and accepted - Capecitabine tablets. The oncologist didn't pressurise me but my GP surprised me by saying he'd go for it. I did however also have the suspicion that the cancer had tried to get into the vascular system so that might be different to you.