Bowel cancer treatment and side effects

JeffM

Lymph nodes in bowel wall - to remove or not remove?

13/7 - Thanks everyone for helpful and thoughtful commits. Much appreciated.

Jeff

Hi everyone, I'm going in for rectal cancer surgery next week and have a question for anyone who may have had a choice to make on whether to remove a lymph node in the bowel wall that may or may not be cancerous. After being diagnosed with Stage 3 rectal cancer in Jan this year my tumour and 2 of the 3 inflated lymph nodes in the bowel wall responded well to 5 weeks' chemo-radiotherapy in March/earl April, but my multidisciplinary team are concerned about one lymph node which hasn't responded to the treatment, and actually seems to have grown slightly since the original scans in Jan/Feb. The team's recommendation is to remove this node whilst removing the rectum where the remains of the tumour are, however this makes future sexual function and continence more likely to be problematic. It feels like a classic Catch 22, as they won't know if the 'rogue node' is cancerous or not until they remove it and examine it. I'd be very interested to hear from anyone else who is or has been in this position, and how they reached a decision on how to proceed. My surgeon was clearly on the fence, but others in the MDT had clearly recommended going for the node in order to maximise a positive medical (as opposed to future quality of life) outcome! Thanks. Jeff, Edinburgh

Polly68

@JeffM so sorry to hear about your situation and that the decision is down to you. Personally I would do anything to ensure the cancer was removed, even if there's a question mark over whether it is cancer or not - better to be safe than sorry!! With regards to the issues the removal may or may not cause, let me assure you there are many things that can help with any issues you may subsequently have. Slightly different, but my husband had bacterial meningitis at 24 and almost died. The disease caused severe nerve damage from the waist down, and although he learned to walk again and to all intents is now back to normal ( he's 50 this year!), he has been left with bladder, bowel and sexual function issues. He copes very well and with some medical intervention is able to function pretty much normally. Of course he does still have days when he gets down, but he's thankful to still be here and feels it was a small price to pay. Good luck with whatever you decide to do :x::x::x::x::x::x:

JeffM
Quote from @Polly68:
@JeffM so sorry to hear about your situation and that the decision is down to you. Personally I would do anything to ensure the cancer was removed, even if there's a question mark over whether it is cancer or not - better to be safe than sorry!! With regards to the issues the removal may or may not cause, let me assure you there are many things that can help with any issues you may subsequently have. Slightly different, but my husband had bacterial meningitis at 24 and almost died. The disease caused severe nerve damage from the waist down, and although he learned to walk again and to all intents is now back to normal ( he's 50 this year!), he has been left with bladder, bowel and sexual function issues. He copes very well and with some medical intervention is able to function pretty much normally. Of course he does still have days when he gets down, but he's thankful to still be here and feels it was a small price to pay. Good luck with whatever you decide to do

Thanks Polly!

JeffM
Quote from @Gypsy:
Hi @JeffM
I feel that if I were in your position I would have it out. The fact that it has grown slightly in my mind would be sufficient to really convince me that it is cancerous despite the medical doubt and so I would want it out and to face the consequences afterwards as the lesser of two evils. But as I have not faced this, it can only be a theoretical exercise and I hope that you can reach the decision that is right for you.
Gypsy

Thanks Gypsy!

JeffM
Quote from @Tiffany:
@JeffM

After all the treatment that you have been through and having come this far I honestly think you have to have it taken out. I am a little confused though - why wouldn't someone have it removed if there is any question mark? Sorry I may sound a bit divvy as my husband was inoperable but would having the node removed make any difference to your recovery or to the operation in general? If the answer is no then definitely GET IT OUT! I wish my hubby would have been operable - it is the only sure way of ensuring that cancer is out of your body.

Whatever you decide I wish you all the best. Tiffany

Thanks Tiffany!

JeffM
Quote from @kitti:
Hi, @JeffM had my robotic apr surgery 5 weeks ago and i too had a node near my bowel wall, it was removed. Infact i wasnt given the choice thankfully, however im now having to self catheterise as they suspect i may have nerve damage from surgery. I still have feeling but when i sit down on the toilet the muscle/trap door that allows the urine out doesnt work! The surgery was more complex than expected with lots of cysts and adhesions caused by chemoradio, my surgeon was however pleased with the results even if it hadnt gone exactly to plan. Having to self catherterise isnt ideal but if thats what its took to get it all then so be it. Im seeing my onc on weds to discuss chemo. Hugs

Thanks Kitti!

JeffM
Quote from @Sparkles:
@JeffM I personally would have it removed! I just wouldn't take the risk of leaving anything behind that could cause a problem later down the line, and in my opinion (and remenber we are all different) but our bodies never work the same again including sexually after invasive surgeries and chemoradiotherapy anyway

Thanks Sparkles!

Sarah44

Hi @JeffM Ditto to what everyone else says. In terms of sexual function- if there are problems afterward I believe they can do quite a bit to help in that area. Same with continence. Sending very best wishes :x::x:

JeffM

Thanks Sarah, much appreciated. J

charleyb

Hi @JeffM as the wife of a stage 4 my answer would be take it all out straight away, however i totally understand it is not as simple as that. All i would say is that we were expecting some issues following radio and surgery, and so far my husband has not suffered any. With any surgery there are risks, and the surgeon will always tell you the worst possible outcome, they have to prepare you. For my husband we were told that they may resect the bladder, small bowel and lots of other bits. I kept questioning this as why those areas, the tumour was no where near, but they have to prepare you for the worst. In the end none of this happened. I wish you well with your treatment, and if in doubt always ask for a second opinion :x::x:

JeffM

Thanks Charley, very helpful advice.

SheliasDaughterAngela

@JeffM like everyone else I think if there is a question mark get it out, give yourself the best posiible chance :x::x::x:

JeffM

Thanks Angela (and everyone) , I got the lymph node removed on Monday along with the tumour - the procedure was successful and am now recovering well in the Western General high dependency unit. Feel pretty shattered but pleased to heve made the right decision and to be cancer free! 😀

charleyb

Amazing!!! well done @JeffM what a relief for you, rest and up and recover now :x::x::x:

kitti

Thats great news, Im so glad you decided to have the node taken :x::x:

GD62

Well done have a speedy recovery.

Positive healing :)

Gypsy

Thank goodness it's all out!
:x::x::x::x:

Polly68

@JeffM so glad the op went well and you are confident with your decision :x::x::x:

Sarah44

@JeffM so pleased it is over and you are on your way to recovery :x::x::x:

JeffM

Day 3 after op and feeling remarkably well. Just about getting the hang of the stoma too! Thanks again to everyone for all the good vibes and well wishes. Jeff :x: