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Beating Bowel Cancer Community

Stage 4 bowel cancer

jinnyp

Should I keep chasing HIPEC?

Hi, I have a bit of a dilemma and would value the opinions of those of you who have been in a similar position.

I was turned down for Liver resection by the Royal Free who were concerned about 2 nodes on my peritoneum. Following a long discussion with my Oncologist I asked to be referred to Basingstoke to see about the possibility of HIPEC for the peritoneal mets and feasibility of Liver resection as my Liver mets are still shrinking. They asked for a Liver MRI and the Liver surgeons said that it would be a complicated procedure because the largest met is right next to the bile duct and there was a high chance of bile leakage but they were prepared to consider it depending on what the Peritoneal surgeons said. They felt that I wouldn't benefit from the procedure and have said No.

I half expected it although there was a small glimmer of hope as the Liver surgeons replied first but now I'm not sure what to do next. My Oncologist is happy to refer me somewhere else to review my case if that's what I want but I'm not sure if I should keep pursuing it? My gut reaction is to try and see what Imperial or The Christie say but as my Oncologist asked me - would I accept it if they said No as well?

Part of me says that I have been pretty well on my chemo and should just run with it as I can live a pretty normal life at the moment - maintenance will be Cetuximab and 5fu 2-3 weekly depending on my counts and I know this is very do-able. I am grateful to be so well and my worry is that if I chase a tiny chance of cure then I could be shooting myself in the foot and possibly end up in a worse position ......But.......there is a small chance of a cure and the other part of me feels that I should pursue that.

I have twin girls who are 18 later this year and I want to be around as long as I can for them and my husband and recently widowed mum.

I know I have to make up my mind on my own but would value any advice/opinions.

Thank you :x::x::x::x:

Barbara

@jinnyp I was turned down for HIPEC by the Christie and told that it was highly unlikely that I would ever become a candidate for it because of the extensive nature of the peritoneal mets. Following 20 months of palliative chemo my last scan showed no evidence of activity disease, but I am not pursuing HIPEC as my quality of life is excellent and I don't want to reduce it by undergoing such extensive surgery with no guarantee of either longer or better life. But it is a tough decision and if I were not as well as I am I might feel differently. My oncologist isn't a fan of HIPEC as most of his patients who have had it have had recurrence quite quickly.

Bridget55

Hi @jinnyp - if I was in your shoes I would pursue a 2nd opinion. HIPEC doesn't necessarily cure - i have had a recurrence after 12 months chemo free. it does derisk recurrence to the lowest level. I recovered pretty quickly post op and was up and about after 10 days but I only had peri mets. I would go for a 2nd opinion prob Chisties ( only based on my excellent experience there) - that doesn't mean you need to go ahead with it but get a different or validated point of view. the decision to go ahead with it is a different thing and may take some time to make. Are you private or NHS? Bridget x happy to chat further

HH79

Hi @jinnyp I would get a 2nd opinion and from the Christie xxx sorry brief will write properly but yes do look into. :x:

charleyb

@jinnyp the decision is yours, but I have seen lots of people turned down by one hospital and get a more positive attitude from another. Personally i`d say go for another opinion, if they both say the same then what have you lost? @Fighting4hubs hubby was tuned down by basingstoke but successful at imperial. He is now in the middle of his ileostomy reversal, and the last scan was stable. At least you would have another opinion and another person looking at your scans, i always say no stone left unturned. Big hugs :x::x::x::x:

Bear G

Hi @jinnyp
This really is a very personal decision and I think @Barbara makes a very good point about quality of life - and she is enjoying a fab life!
That said, for peace of mind I’d be tempted to ask for a referral to Imperial (or Christie, but I know some of the people from Imperial) to see what they say. Otherwise you may be left wondering in the future. At least that way you’d know if HIPEC is an option and you could then choose whether or not to go for it.
Hope that helps.
Big hugs
Bear
:x::x:

jinnyp

Thank you @Barbara, @Bridget55, @HH79, @charleyb and @Bear G. You are all making great sense.

At the moment I’m thinking second opinion, just dithering where to go - Imperial is much nearer but willing to travel if necessary.

Like Barbara I am really well at the moment and am a bit scared of making things worse as I would be a long time off chemo if I had both procedures.

@Bridget55 I would be nhs - we had insurance until hubby changed jobs about 2 years ago and unfortunately we didn’t pick it up when he left - oh for the benefit of hindsight!!!

I have a lot of thinking to do 😄 but you lovely people have helped no end - Thank you all :x::x::x:

HH79

Hi @jinnyp I was same boat eg no Basingstoke. My team Oxford etc you know them...happy supporting 2nd opinion but I appreciated their advice of very established / sensible views from Basingstoke & Christie.
That said, the chap at Imperial is v experienced from both Basingstoke & US / mAyo :x::x:

jinnyp

Thanks @HH79 😄 I remember you saying that you had had a good discussion at the Christie, I think that is what I need as I haven’t actually seen anyone, they have just reviewed my scans etc. If it is not advisable I think I’d be able to accept it if someone actually sat with me and explained it fully rather than just getting feedback from my Oncologist from a letter.
Who did you see at the Christie, I think I have a name for Imperial, going to do a bit of research.
How are you doing? I think of you when I am in Weston Turville!! Would love to try and get to one of the meet ups over that way :x::x::x:

HH79

Hi @jinnyp will PM you contacts.
Yes it was brill to meet face to face. Found Christie’s amazing admin right through to follow up.
Basically my situ is cancer not just Peri, but para aortic lymphs and some up in chest. Am also BRAF. Currently I’m having very good chemo response and need to stay on systemic chemo to control it. To stop chemo now means lymphs activate and disease will progress, I would end up shortening life vs extending it. I just try to keep Clinging on for new treatments!!! That said, if my situ changed and the Peri mets gained momentum and growth, although stopping chemo to do hipec means lymphs can move, the risk is more sensible there as the Peri mets would pose more of a risk to morbidity anyway. I still work with Christie and also what’s good is if I had a PET, they liaise with your local team eg have at Oxford, not have to go up to Manchester. I’m currently NED on maintenance Cape & Avastin. she says ...fingers crossed....there have been a few occasions now where people have a no from Basingstoke and a yes Christie / Imperial or Good Hope Birmingham so worth pursuing :x::x:

jinnyp

Hi @HH79, thanks for that!
Is brilliant that you are NED - long may it continue! Roll on new treatments!!!!!
Do you get your Avastin thru insurance? So wish we had kept it up when hubby changed jobs but stupidly didn't seem worth it at the time - will have to self fund Avastin if I ever need it but Cetuximab seems to be doing the job at the moment and I know I'm lucky to have it.
I think for peace of mind I need to get another opinion - Now just to decide where :)
I am sooo glad I found this forum and you lovely people :x::x::x:

HH79

Hi @jinnyp yes privately. Cetux works wonders vs Avastin but some mutations eg BRAF can’t have Cetux so we are grateful when Avastin an option. Yes the forum is lovely support :x::x:

GD62

Hi @HH79 good idea to have a second opinion just to give an opportunity to make an informed choice. On my last cycle of capox , post op scan due on July 13th, been December since CRS/HIPEC so don't know my outcome just enjoying each day as it comes. Anyway good luck with it all :x::x::x:

Bridget55

Hi @GD62. Good luck with scan and results. Friday 13th eh ! Well done for getting to the end. Last one for me is August 17th. Back at Christies next Monday 9th x keep on enjoying each day as I am :x::x::x:

GD62

Hello @Bridget55 thanks and good luck. No 13 is usually quite lucky for me lol x.

Positive healing to you :x::x::x:

Wren17

Hi@jinnyp i was rejected several times including from the Christies and they all said same about being off chemo and not knowing whether it will do more harm or good - ill find that out on the 10th but regardless for me it was about making sure that i did everything possible to stay as long as possible for my two girls 9 and 11 years. Hence the fact i persisted with the referrals. So regardless of the outcome ive got no regrets although im suffering with bad back pain and am hopefully on mend from 5 week post-op infection i developed in hospital :x::x::x:

Wren17

Hi@GD62 good luck for results on 13th i will be thinking of you :x::x:

Chelts

As somebody else mentioned @jinnyp , there are now other options besides just Christies and Imperial. I was seen at Sutton Coldfield Good Hope yesterday and have been given the go ahead for HIPEC.

jinnyp

@Wren17, @Chelts thank you 😄 It’s so good to get different views from people who are or have been in similar situations. Really helps with making the decision. :x::x: