Stage 4 bowel cancer

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LouLoubelle

Update on my surgeon's apt yesterday 😣

Well one day up and the next one down. I saw my lovely surgeon yesterday and I am more confused than ever now. He seemed to think that I had been having symptoms of a bowel obstruction and that is why I was called in a week early to see him. He has left it with me to decide whether to have the palliative bowel bypass surgery for my subacute bowel obstruction, just under my stomach, and potentially wait a month after that until I start chemo with lonsurf or start the chemo soon and basically wait until or if my bowel starts to obstruct and I have to come in as an emergency patient via A&E. I am now in a horrible catch 22 situation as whichever course of action I choose I have a feeling it will be the wrong one. Has anyone else been asked to make a decision on something as crucial as this. I really don't know what to do now. It seems really wrong. My CEA level was around 270 when I had it checked yesterday and rising I am sure day by day. I have had no chemo since the last cycle in the beginning of June before I had to go in for the emergency laparotomy so feel I really need to start back on it again. 😩😬😣😢

mem

‘What a rock and hard place @LouLoubelle and I’m sorry to hear you’re even in this position.

I had a hard decision to make with my brain tumour surgery. Obviously had to come off chemo for it to happen and still not back on it now. For me, it was all down to QOL and my brain tumour started to disrupt that, which was why it was a no brainer (pardon the pun!) even though I knew what side effects the surgery would cause and my lungs would take a hit not being on chemo too.

I wonder, in both of your specialists experience’s, would they be able to advise/give you some insight on the best way forward? Pros and cons for both ways (so to speak). It’s certainly not an easy decision to make but either way we will be right with you!

Love Marie :x::x:

Tanguera

@LouLoubelle I'm so sorry you are facing a difficult decision on top of a serious medical condition. I can't help you with medical advice and I have never faced a decision like that. However my first thought was that I would avoid A&E at all costs. Before my diagnosis I came to A&E in agonising pain. They said it was IBS and gave me buscopan. In reality I had complete bowel obstruction and perforation.The way I see your options is you have a specialist colorectal surgeon who you trust. If you don't schedule surgery with him and end up in A&E you have no idea who is going to be on duty on that day/night. Good luck. Hope you are happy with whatever decision you make. Lots of love. :x:

Stella 2020

Hi @LouLoubelle , sorry to hear you are in such a difficult position again. If you are to have an emergency operation, you won’t had proper bowel prep and more prone to complications during and after the operation. If you have the elective surgery, how soon can it be and how long soon afterwards can you start chemotherapy? Could you email the surgeon about it? Just be direct as @justhope said, what would he do if that is his dearest? Take care :x::x:

LouLoubelle

Thanks @Stella 2020, @cyclingjohnny, @Tanguera, @mem, @justhope, @Lucy118, for all your help and good advice. I did have my laparotomy and removal of ovaries and tumours from the pelvis while I was on chemo in June and either I was very lucky or my surgeon was very skilled or a bit of both, but I went home 5 days after the op without any complications . I also was extremely lucky he was the surgeon on call when I came in to A&E or who knows what would have happened. If I do opt for the surgery he did say I could have it done the first week in November and he will fit me onto on of his emergency lists. I could then start chemo after a month. It does scare me that I could go into full stomach obstruction at anytime if I don't have the op as that is where one of the tumours is apparently. He showed me on the CT scan where my duodenum was full up of fluid.
I think I do need to ask a few more questions before I can decide. As @mem says QOL is very important at the moment. Thanks again.
I had my covid jab yesterday and had a bit of a reaction today temp 38.4 and headachy and backache. OK now. :x::x: :x::x:

kawa909

Hi @LouLoubelle Sorry your appointment didn’t go as well as planned. Seems pretty unfair to leave that kind of decision to the patient and can totally see how all this waiting must be so frustrating (and surely they can empathise with this too). One poss suggestion: perhaps you could contact private oncologist on Monday explaining the outcome of meeting with surgeon and ask if they can speak to surgeon ASAP to agree between the two of them what is the best path to follow. (Not sure if oncologist would charge additionally for this given it’s private but hopefully not.)

Alternatively (or maybe do this as well) you could contact surgeon and ask them to contact private oncologist to sort it out. Either way stress how you need this decided ASAP and you feel like you’ve been left in an impossible position having to decide between two courses of action when you are the patient and not the expert like they are.

louise28

Hi @LouLoubelle gosh im sorry about this latest curveball. I really can't stand the cancer rollercoaster. One minute you're feeling hopeful, the next minute shat on from a great height. It's exhausting. And I am sorry you're in this position.

I think that a second opinion or similar to what @kawa909 suggests... I also totally agree with what the others say...waiting for the bowel to block could be much more dangerous and, I'm not a medical person, but it seems more likely that if the bowel perforates there could be further spread(?) Not only that, but if recovery takes longer it's even more time off chemo. So none of it makes sense really to me.... :x::x:

Lucy118

@LouLoubelle, I do hope you manage to get your questions answered. Sending lots of love and strength :x::x::x:

Baxter2

Oh gosh @LouLoubelle Im sorry you're in this position. It's a difficult dilemma for sure as there are clear benefits for both options aren't there?

I think the fear of having to present at A&E with Bowel obstruction might encourage me to consider having the by-pass surgery soon then concentrate on getting well in readiness for chemo which seems likely to be long term? I think if the chemo was believed to be very effective in reducing tumours then I may opt for some chemo first I think? From my understanding, Lonsurf may achieve some reduction but mainly stability from what I read? I'm sure others will be able to contribute here and share their views and experience. It's a difficult decision of course that only you can make. I also favour what @justhope mentioned and ask the surgeon or oncologist, If I were your daughter/sister etc., What would you be recommending?

Good luck and please keep us posted if you can?

Lots of love,

Karen 💙💚💜❤️💛

Liz Blakelands

@LouLoubelle Oh I'm so sorry you have such a hard decision to make. I can't really add to any of the advice you have been given above, just wanted to send you a big hug and good luck.
Liz :x::x:

LouLoubelle

Hi @Baxter2, @Liz Blakelands, @cyclingjohnny @Lucy118, @Stella 2020, @justhope, @louise28, @kawa909, thank you for all your good advice and support. I have now been booked in for the stomach bypass operation next Tuesday so hopefully it will be successful and I will be able to start the chemotherapy afterwards. I feel a lot stronger now I have a definite plan. I have had 2 surgeons and 2 oncologists advising me to go ahead with it so that is what I will do. I agree it is safer that waiting until I become a surgical emergency, I have been through that twice and really would like to avoid it a third time if possible.
I have to still decide whether to have chemo in the private sector, lonsurf and avastin (which will be expensive as I don't have private health insurance) or in the NHS which is just lonsurf on it's own. Sadly it can't be combined at my Trust. I will jump that next hurdle when I'm ready for it. I hope you are all doing OK and coping with the various chemotherapy challenges.
Lots of love, 💜♥️
Louise :x: :x: :x:

Lucy118

@LouLoubelle, I’m glad you’ve managed to make a decision. I think you’ve made the right one. Sending lots of love and strength and I hope you manage to sort the right chemo for you too. :x::x::x::x:

Baxter2

Hi @LouLoubelle,

Glad you've made the decision your happy with and are feeling stronger having made it too! Hopefully your surgery will be soon and you can get started on chemo ASAP. I can hardly believe your trust won't allow Avastin as an 'add on' drug? I'm sure others have done this but no doubt it's been hard work to arrange as well as the crazy costs.

Sending lots of love your way,

Karen 💚💛💜❤️💙

Forum user

Well done @LouLoubelle I think you have chosen well and best to just focus on your operation first and make decisions about the chemo regime later on, take care cheers John.:x::x::x:

Michelle74

Hi @LouLoubelle , glad you feel stronger hun, get the fight back and you can do this. Its good you have a definite plan and if 2 surgeons and 2 consultants are in agreement I would be inclined to go with them. Hope all goes well on Tues and you have a speedy recovery ready to get cracking on the treatment. Is there anything your Onc can do to help with the cost, I'm sure some peeps on Facebook were able to negotiate the price and/or get it at cost? Lots of love.:x::x:

Liz Blakelands

@LouLoubelle So glad you have 2 surgeons and 2 oncologist backing the decision to go for elective surgery. I'm sure it is better than waiting to become an emergency. I think you are very wise to concentrate on the operation and park the decision about the type of chemo until after the op.

Well done you for fighting your way along this tough road. Time to relax and rest up before the op on Tuesday. All the very best, big hugs
Liz :x::x:

Stella 2020

Hi @LouLoubelle i think it is great to have the bypass operation next Tuesday. Best of luck! Hope you will get the chemo sorted nearer the time too. Lots of love :x::x::x:

kathyS

@LouLoubelle brilliant news about the op on Tuesday here is hoping it will all go smoothly! Cross the chemo bridge when you come to it. Lots of love :x::x::x:

LouLoubelle

Many thanks all for the kind words and thoughts. I am hoping the surgery will help with my appetite as it has completely gone. I seem to only be able to eat small amounts, very slowly. If anyone has any suggestions to help with this I would be very grateful. :x::x::x:

justhope

Good morning @LouLoubelle have you been prescribed any supplements? My husband has had a few different ones and they all helped him get the nutrients and vitamins he needed. He has had ensure plus and complan milkshakes and fortisip they may be worth a try. Both now and for after surgery maybe try to get some from GP air you haven’t done so already :x::x::x:

Ali

Hi @LouLoubelle, so sorry to read your dilemma but glad decision has been made and agree it is better to go in for a planned op than as an emergency. I ended up as an emergency after being constipated for 8 days. Ended up in A and E on a drip for 3 days, was either to have a stent but finally decision made to do the op to remove tumour and 47 lymph nodes. Don’t think the stent would have worked anyway and was glad to have the op before anything got worse. Now on chemo for 12 weeks and have had second infusion and trying to manage side effects.
I haven’t had an appetite since just before my op but as my weight reduced after the op I have been taking protein drinks and added a banana/avocado or other fruit to make a smoothie. At least I am getting some protein. Rest of my diet consists of salmon, chicken, rice, pasta, jacket pots or mash and minimal veg as this can give me wind! I love my veg and salad too but not risking it at the moment.
I wish you well for the op.

Ali :x::x: