I find myself in the Marsden with my 4th obstruction, this being more serious. As I was being given my pre meds for my chemo I collapsed, crash trolley 15 staff etc... they were absolutely amazing. I have grade 4 PPC and in 4th line chemo.
3 days later, the obstruction has cleared, after what can only be described as Armageddon in the toilet area 😳. I am now on
TPN and regular fluids to replace all the things I’m low on.
The suggestion of an op on the bowel has come up. As you all know, they can’t tell from the CT scan if it’s cancer or adhesions, they will only know when they open me up and that will be when the plan of what they can do will be made.
I have just started my weekly/carbo routine and have only had 3 and have some way to go.
The decision I’m wrestling with is... do I go home on my low fibre diet and keep trying to manage it and have my chemo, with the risk of going into obstruction and bowel perforation. Knowing that if this is an adhesion the chemo will never cure it and it will probably happen again, even more serious
Or go into risky surgery that may turn out to give me a quality of life that just isn’t there at the mo.
I only ask if any of you have faced this decision or similar and what you experiences have been.
One thing I do know, I’m in the best place to be making this decision, they are being very considered and informative.
Thank you 🌻
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DianesK
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Whilst I have yet to experience the blockage problems you discuss, my gut feeling is that you should go for the surgery, as only then will they know fir sure whether it us adhesions or the cancer that is causing the blockage.
As you say you are in the best place! Which I totally endorse and am sure they would not be offering surgery unless they thought it a valid option.
Why put yourself through the chemo, whilst the bowel problems linger?
When I had my major surgery four years ago, part of my bowel was removed, whilst it took a good six months to recover m U am so grateful fir the surgery as we all know , bowel probe so can be hellish!!
I wish you good luck whatever your decision. Do let us know how you get on!
Really sorry you are in this position and what a difficult decision you have to make. My heart goes out to you. I have not been in your situation but I have an incisions hernia which has caused me a few problems ending up in A/E. I was referred to a general surgeon but after discussion with my oncologist they said they would not operate. I WOULD like to have the surgery because I am frightened the hernia could strangulate. I KNow there are arguments for and against surgery hope you can make the best decision for you. Chris
Tough one and I've not had this particular one, but very much a 'should I/shouldn't I?' dilemma over a serious, potentially life threatening, op for my second occurrence. Two things made me go for the op:-
1. A top flight team (mine was at Queens Charlotte) is going to do their absolute best for me as their reputation and figures matter to them (sorry but, at times, we are just a number, in my view) and ...
2. I asked, "If I was your Mum / sister what would be, from your position of such knowledge and experience, your guidance to me?"
I have never regretted my choice to go ahead with the op.
Take care and my warmest wishes for whatever your choice is.
If you are having regular problems I’d say that it is far better to have the operation now when you are “ok” rather than it being an emergency procedure - your team wouldn’t suggest it if they didn’t feel it rould benefit you though it’s hard these days to get a medic to come down firmly for something - I’m fed up of the “ what do you think?” - good luck with whatever you decide x
Can relate to this... just got through my first blockage after first treatment of 5 th line chemo 2 1/2 years down the start line ( stage 4 age 71). Eventually gave way its special liquid but currently going other way with baby like squishy poop without warning into my big girls knickers which is also a great wrap around sanitary pad ( brilliant solution and holds all accidents safely), at mo not getting prior signals and need help getting to loo anyway
I have just got home after 3 weeks in hospital and now at quality v quantity of life stage... I am as weak as a baby
anyhow like you on low fibre diet and realising that a lot of this disease is to do with bowel issues being the one that gets you in the end...
Long may everyone's function sensibly
Hope operation works...I am inoperable in this area...
As Coldethyl has already said I think there are great benefits in going ahead with a planned surgery rather than waiting and running the risk of the panic and trauma of an emergency surgery.
It was something my GP pointed out when I was deciding whether to go ahead with repair to a number of post debulking incisional hernias which were causing me problems a couple of years ago.
For what it’s worth I am very glad I had the surgery however I was fortunate that it flared up whilst I was in “ remission “ and they could see on ct scan that it was the hernia rather than tumour causing the obstructions.
I do feel for you having to wrestle with these problems especially mid chemo. Have faith that what ever you decide will be the best one you can make at this time.
Hi Diane. I've not had a blockage (yet) but did opt once before for big surgery instead of just other therapy... for my recurrence. And haven't regretted it.
If you are strong enough, an option like that might bring clarity what's going on in your body. But it's got to be your decision alone.
If it wasn't such a pun in your current situation, I'd say go with your gut.. uh oh.
Hope your bowels get back to an acceptable state soon either way. Hugs. Maus
Thank you so much, my head is saying go for the op, I’m seeing the medical and surgical teams again today and to be fair they are being very considered about the approach.
Take care
Di x 🌻
I had an emergency admission coming up to three years ago for a blockage, mid-way through 3rd line. (and between xmas and new year!) With hindsight there'd been some rumblings, but nothing like this.
The first surgical team were not keen to operate. The team that took over were much more focussed on the dangers of not doing so. I laid off the morphine one night and researched it, and it seemed to me I should clearly go for it. I was in surgery by 11.00am.
In my case it was adhesions, so it could never have cleared itself.
It's painful of course, and I spent a lot of nights in the loo rather than sleeping. This changed when I went back on probiotics.
I'm even more uncertain when I rush off to the loo what it's for!
I've got two unsightly hernias.
If memory serves, the chemo was only put back by a week or two.
i was instructed to eat normally. And that's what I do.
In your shoes, I'd go for it.....good luck making up your mind x
I do feel in my head like the op is the way forward.
The teams here are being very informative and do make me feel that they have my best interests. It’s the gamble you take... is it adhesions or tumour, the outcomes can be very different.
Here’s me thinking the only decisions I’d be making in the next few weeks would be about Christmas presents 🙄
Thank you so much again.... you guys are amazing. Stay well
I had emergency surgery for a bowel perforation and believe me it wasn’t a nice place to be in. I laid in bed at home thinking this pain will go away and only went to a and e when my temperature rose. The rest is history, I’m still here that’s the main thing but it was touch and go. I manage mine with diet/laxatives and have a Stoma now. It’s a very tough decision to make but if there is a risk of perforation I would do whatever to avoid. Wishing you all the best x x
I’m just home yesterday from 3rd obstruction, 2nd in past 2 weeks, so can understand your dilemma, I was told mine was probably adhesions, which I thought was a good thing until I read the replies and now it’s dawned on me that this is going to keep happening. I get terrible pain and vomiting and end up in a and e, given morphine, ng tube and steroids and it seems to settle down in a day or two. I’m currently on weekly Taxol and am a third of the way through, but this has now been held off for two weeks plus my week off so three weeks since last dose, which bothers me. The dr said that although this is a surgical problem the chemotherapy takes priority and they will treat conservatily for now. When in the grips of obstruction I would jump at the chance of surgery but given that it seems to settle for me quickly, I think for now the treatment I’m given is appropriate. I agree with the other ladies that for you it may be better to go with planned surgery rather than emergency x
Thank you so much for replying, you are going through the mill.
Sounds like you and I have been having similar problems.
I am usually taken to A&E, they do exactly as they have done with you, it settles and then I go back to my low fibre diet. This episode on Monday was more severe and thankfully at the Marsden so they could see first hand what the problem is.
I am torn between carrying on and trying to see if the chemo will fix it but as you have said, if it’s adhesions, it will never work and carrying on like this isn’t good.
I’m still mulling it all over in my head making a list of pros and cons.
I have no experience yet with this but I feel for you having to make such a momentous decision with imperfect data. Looking at your history you have survived triple negative Bc and lived a long time. You are a survivor and I think if you follow your instincts with lots of input from these wise ladies and your dr you will be okay. My instinct might be finish the chemo and do a liquid diet. Xoxo
This is a tough one but I would ask if there is any way they can check if it adhesions or not. What about an MRI? Push them for more information.
You wrote " As you all know, they can’t tell from the CT scan if it’s cancer or adhesions". I didn't know this. I don't think the Marsden have ever talked about it to me. I was told many years ago that I had adhesions from previous surgery - the surgeon who told me that had had to cut through them to get where she wanted to go (not cancer related BTW) and said they would recur. I did mention adhesions to the Marsden but they have never commented. Not that it would make any difference to me as my lovely cancer is inoperable. I have had a couple of blockages but since seeing the dietician at the Marsden my guts have been less troublesome.
Thank you, someone earlier suggested about asking if different imaging could tell, which I’m going to ask when I next speak to them.
I was told that opening me up again would be a last resort , the op will only be to relieve the bowel, I will still be left with my cancer. Their thought process is that they can see one single point that they think would give me a better quality.
I’ve got a list of questions for them because I’m not convinced either way at the moment.
Thanks for mentioning the dietician, seems like they have been really good, I have been referred to a few but they haven’t been very helpful. I will try and get to speak with them.
Really appreciate your help, it has given me food for thought.
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