Hi all,
I recently had APR surgery to remove two adenocarcinomas following failed sphincter sparing treatment plan of papillon and chemoradiotherapy. Following surgery, the histology report came back as follows, relayed to me by my colorectal surgeon:
> All known cancer removed with clear margins
> Original tumour T2
> New tumour T3, not apparently physically joined to original tumour (frightening how quickly it grew, not even detected in MRI 2.5 months ago)
> no metastases (as per most recent pre-op scans I suspect)
> no lymph node infection
> however N1C reported
I'm getting married abroad in 6 weeks. I'm recovering from surgery really well, so apart from dealing with a colostomy I'm feeling good about the upcoming event. However, I fear that I may be pushed to do chemo. The surgeon explained that due to my relatively young age (40) and otherwise good health and physical condition, I would likely tolerate&recover from the chemo effects well enough to justify not taking the risk of not doing a mop up round of chemo. He went on to say that this wasn't his recommendation either way, it would be discussed by the MDT and then I would meet with my oncologist to go over the details and agree a way forward.
As this report came out just before Xmas, coupled with the fact that no chemo could be administered until mid-Jan at the earliest due to APR surgery recovery, I've been left to ponder all this while I wait for the oncologist's office to set up an appointment for me.
I was wondering if anyone has had a similar experience, and specifically can elaborate on N1C and if it always means chemo is strongly advised. I understand the basic definition, but to me it seems less frightening than N1. I have no apparent lymph node infection, according to histology of removed bowel and all MRI's to date. Yet, I see N1C being regarded as a high risk condition. It doesn't make sense to me, apart from possible evidence of venous invasion (?!?!) or that may be a tumour deposit that has totally consumed the one lymph node it infected (I think?!?!).
I'm hoping I can put off chemo until after I return from my wedding at the end of Feb 2020. Does that sound overly risky, considering the above?
What chemo are they likely to prescribe given then above?
Thanks in advance for any and all advice.
Regards,
Charles
Hi Charles ,
May I wish you all the very best for your wedding and well done on your recovery from surgery .
You might find it interesting to look up the Nice Guidelines for colorectal patients . They give a full and detailed pathway recommendation for clinicians to use as a guide when decision making . There is a timescale when research indicates that chemo is best administered within to get the desired results . But it’s maybe not as narrow as you might think . Quite a lot of people have post op complications and need to recover form them before they even can start chemo . So it may still fall into the time scales for after your wedding depending on when you were operated . Your oncologist will have all the up to date research .
They will most definitely give you there clinical opinion and won’t sugar coat it but it’s entirely up to individuals if they want to proceed with chemo . Oxaliplatin and Capecitabine are two of the commonly used agents but there are others .
One thing I would say they look at all the factors from tumour depth , cell type , lymph node involvement etc and make a decision from this angle . The thing to keep in mind is chemo can be stopped . You may not experience any of the side effects was able to work I think . I have tagged her in to give you more first hand insight . My mum had chemo for two years . The first year at full strength but the second at a reduced dose and that eliminated a lot of the side effects . They do take very good care of you and many people have their treatment altered to give better quality of life . Or even stopped .
They monitor you after every treatment before administering the next dose to check your blood and go through all the side effects before proceeding with the next round . There is also many treatments for side effects .
Please don’t worry about being forced into anything as many people struggle with this aspect . My own mum was up against the wall but managed it at 69 and it did s as marvellous job .
All the best with your decision and I think you will find your talk with the oncologist helpful with a lot of what your currently processing. We also have a helpline 0808 808 0000 and they would be more than happy to talk it through with you if you would prefer that .
take care ,
Court
Helpline Number 0808 808 0000
Hi Court,
Thanks for getting back to me. I guess I should just try to relax and wait to speak to my oncologist.
I have read the following article/journal which was interesting to me and may be of interest to others in my situation who happen to come across this post: https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.25968
Kind regards,
Charles
Hi Charles
You’ve had a great reply from court and deciding whether to have chemo or not is a personal decision so this will just be my personal experience.
I had 2/17 lymph nodes affected both of which were close to tumour. I had my operation at the end of November but developed an infected fluid build up followed by lung clots so I didn’t start my chemo until the beginning of April. The oncologist gave me the choice but said she wouldn’t be unduly worried if I didn’t go ahead with it.
My feelings were that I felt I had to throw everything I could at the cancer and if I didn’t have the chemo and the cancer returned then would I always wonder ‘what if?’
I had fortnightly cycles of capox/xelox which is capecitabine in tablet form (although a stronger doseage than those given with radiotherapy) and oxaliplatin in iv form. Unfortunately chemo affects everyone differently so there’s no guarantee as to how it will make you feel - I was able to work throughout mine but others have struggled with sickness or fatigue. There are lots of different medications to cope with the sickness and the nurses check with you at each session to see how you’re feeling. To be honest, the oxaliplatin is the nasty one and has quite a few side effects however you may get some or you may not. Sometimes just the capecitabine is given so you could ask the oncologist if that would be an option?
At the end of the day it is your decision and, if you start and then decide that it’s too debilitating then it is your decision to stop although some of the side effects can be helped by reducing the doseage. My friends son got married during her breast cancer chemo and the team worked her treatment around it so that the wedding would be just before the start of her next cycle when any side effects would be at a minimum.
As you say the best person to discuss it with will be your oncologist so hopefully your appointment will come through quite quickly in the new year.
Hope you have a lovely wedding
Take care
Karen x
ps court I think you might be tagging the wrong karen62 in - mine has the letter o inbetween the n and 62 so it’s kareno62!
Hi Karen,
Thanks for sharing. I too feel I need to throw everything at this cancer, but ideally would like to wait until after I return from the wedding. I'll see what my oncologist says.
Has anyone has any experience with a N1C diagnosis?
Thanks again,
Charles
Hi Charles,
I was 41yo, T3N0M0 with EVMI and I was given adjuvent chemo of Capcitabine/5FU for 6 months.
They also said as I was young and fit enough with would tolerate the chemo well.
I'm pretty sure you're going to be offered chemo with what you've mentioned.
My surgery was 19th September and was due to start the first week of December. I asked if I could leave it till after Christmas as it would be just over a week or two from the 3 months since sugery, but they said no.
Aparently statisics have shown the sooner you start chemo after sugery the better the outcome.
Hope this helps, all the best.
Ray
Hi Ray,
Thanks for posting. That's what I'm thinking too. A bit of a bummer...
I hope you're doing well with the treatment and your outcome is the best possible.
Cheers,
Charles
Hi Charles,
All sounds positive to me, congrats on the forthcoming wedding too
I was 45 when diagnosed, now fully recovered (APR same as you).
Unfortunately the boring advice is probably the right advice: let the MDT decide. I would be tempted to put the wedding date to them to ensure they can answer whether deferring any chemo (if needed) until after then poses any risk.
if you haven’t already I’d be asking surgeon/onc to include the Feb date in their assessment.
After my orig diagnosis I deferred my surgery until I had explored Papillon and at the time the surgeon said it won’t make any difference delaying by a month. Perhaps it depends on cancer type etc.
all the best with everything.
Hi gonnahavemestomafun,
Apologies for the late reply to your message. I missed the notification as it went to my spam.
I'm meeting with onc tomorrow so will know more then.
Thanks, and all the best to you too!
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007