General Discussion

lizziejane

No mop up chemo

So I am now 8 weeks on from my surgery. Due to a backlog and the Easter bank holiday the multi discipline meeting only happened on Monday. My McMillan nurse rang yesterday to tell me the date and time of my next meeting with the surgeon (19th, next Thursday). She also said things were good, in fact they were that good that I do not need any chemotherapy. I know I should be really relieved but I’m just concerned and confused. When I was first told I had bowel cancer I was told that because of my age (51) I would definitely have a course of chemo (tablets) to mop up and make sure everything was caught. Now this appears to have been withdrawn I’m worried that a couple of months down the line I will be told it’s come back. I would rather have the treatment than have that happen. Also, reading here on the forum it appears that most seem to know pre surgery what stage they are at, spread and lymph nodes involved. As yet I still have no idea despite having asked numerous times before and after surgery. Is this normal?
Apologies for the long rambling message but my head is all over the place. I appreciate any thoughts or advise you may have.
Love to you all xxx Lisa

Mountainmaid

Hello @lizziejane My husband had his surgery last September when he was 54. We did not know what the staging was before the operation and were told that he may have chemo afterwards. However, at the meeting with the surgeon after his operation we were told that there were no lymph nodes involved and that the surgeon had got all of the tumour out with clear margins. Therefore no chemo was needed. We were told the staging at that point - Dukes B T3N0M0. Part of me is worried that he was not even offered chemo but from what I’ve read, there is no real advantage to having it with the staging he has been given.
It sounds like it is good news from what you have been told and seems like you may have a similar diagnosis to my husband. Good luck with your meeting on the 19th and I hope you will have your mind put at rest :x::x:

sweetcheeks

Hi @lizziejane , my husband was T2N0mX and Geoff wasn’t offered anything chemo , which I too worried over, , just coming up to first scan next month, which is obviously a worrying time :x::x::x:

Mrs2017

Hi, my husband was told prior to surgery after scans they thought it was T3 tumour and then after surgery was told by his surgeon that it was in fact T4 with some lymph nodes involved so he would require Chemo. as I understand it this was based on the pathology report after the surgery. The surgeon also wrote to his GP to confirm this (he is copied on all letters to his GP from the hospital, not something he asked for so guess its just standard procedure with his hospital). My husband does not have a McMillan nurse so not really sure where they fit in but I am sure when you see your surgeon they can give you information regarding stage. All the best Chris :x: :x:

lizziejane

Thank you @Mountainmaid , @sweetcheeks and @Mrs2017 for your informative replies. I have spoken with my three adult children and they see this as a good sign but appreciate my apprehension. I will wait and see what is said at next Thursdays meeting and hopefully my concerns will be put to rest. Love to you all :x::x::x:

Kevp113

Hi lizziejane, I had my surgery last Oct aged 52. I was told pre surgery that it was "probably" stage 2. After the op I was told it was stage 2 and the biopsy came back clean with no C detected in the lymph's. At this point I was led to believe that I would have mop up chemo. When I saw the onc he explained that I was at the low risk end of stage 2 and that chemo would at best improve my odds by 1 or 2% if at all and that I Should consider the side effects of having chemo against the minimal % benefit. Choosing was an great dilemma and the wonderful people on this sight were a treat help in making that decision. I opted to have the chemo but after 2 sessions I was called in because the genetics test had suggested I may have lynch syndrome and awaiting confirmation. One step forward ☺. It was explained to me that there was a certain amount of experts out there who believe that chemo doesn't really improve the odds, and this may be the case here. Equally they maybe waiting for confirmation of the biopsy before committing to anything and misleading you. Take the positives from what you have been told your surgeon has a good idea about what she has seen but as I say want test results before committing.
Best wishes kevin

rottathehutlet

I had my op in November 2015, age 52, T3N0M0. I never saw an oncologist, just the surgeon came to me a few days after the op and said 'good news, you don't need chemo'. So I guess it's standard practice with dukes B unless you are a high risk.

lizziejane

And you have been clear ever since @rottathehutlet? How did you feel about that? Do you feel like life is back to normal now or do you feel it has changed you? I'm really struggling with how I feel at the moment. Many thanks for replying and love to you :x::x:

rottathehutlet

Hi @lizziejane . I have times where I feel constantly worried about a recurrence, but things are becoming more normal now. I had a CT scan a few months ago and haven't got another for about a year. Most of the time these days I forget about it and am getting on with life as normal, but if you check out some of my previous posts you will see that it has taken me a while to get this far. Also, I sometimes worry that just going on as normal and 'forgetting' about it is being too complacent and it may just come back and bite me, if you know what I mean. How long has it been since your op and what stage were you?

rottathehutlet

Sorry, just read the answers to my questions in your first post!

Karen17

My dad's was Dukes B when he was age 60, and after surgery he was told he'd have mop up chemo. Was later told there was no spread or lymph nodes involved so would not need chemo. At the time he was very upset and worried the cancer would return but had regular follow-up colonoscopies.
Everyone's different so you can't really compare but I would trust the team looking after you to make the right decision, but also tell them of any worries you have.
I myself have recently finished mop up chemo for Dukes C1T3N2 and will be closely monitored for a few years. Chemo can be hard but do-able, but benefits have to out-weigh the risks.
Twenty years later my dad is still fit and well 😄

GD62

HI @lizziejane

I would be happy with the news you don't need adjuvant chemotherapy post operatively, probably because your staging was not high enough to need this therapy. Equally, my consultant stated unequivocally post CRS and HIPEC that I was in uncharted territory and I was having CAPOX for three months whether I liked it or not. Happily, I really like my oncologist as he has always been kind, friendly, straight forward and more importantly I have a lot of faith in him too.

So good luck :x::x::x: