HIPEC in the UK?

[Jacky5]

A while ago somebody mentioned that they had been given HIPEC (hyperthermic intraperitoneal chemotherapy) in the UK.

I'm interested in HIPEC and although it isn't used routinely here (doesn't seem to be recommended by NICE) I understand it is used quite regularly in the States. I wondered if it is available on the NHS at all and if so which hospital/area offers that type of treatment?

I'm also interested to hear if anybody has experience, successful or otherwise? Was it given as first line treatment ? Is it used after surgery for recurrence?

I'd be grateful for any information.

Thanks very much

Liz xxx

[Yorkiepudd]

Hi Jacky, I haven’t had it or know anyone who has but I do believe this is done at The Christie. Their website may give you some guidance whether this is considered suitable for your cancer and whether they do this for NHS patients. Good luck x

[Jacky5 in reply to Yorkiepudd]

Thanks very much for the information . I'll take a look at the Christie website.L x

[Manchesterlady]

It is done at The Christie hospital in Manchester,for certain types of ovarian cancer , my friends daughter had it done there.Good luck x

[Jacky5 in reply to Manchesterlady]

Thanks very much for your reply.L x

[Bettyxxx]

Hi LizI went to see the Consultant at the Christie after my initial treatment to discuss HIPEC but in the end it wasnt needed (they thought i had residual disease but turns out it wasn’t). At that time a friend of mine had had it for a rare type of bowel cancer and she did quite well for a few years. I believe there was a study done around that time (8yrs ago) and some of the ladies on here certainly at that time had undergone this treatment. I believe it was deemed not to be any more effective than front line chemo in most cases. However this was 8 years ago and as we know things change xx

Good luck

Diane

[Jacky5 in reply to Bettyxxx]

Hi Diane Thanks very much for the information.

I'm coming to the end of 2 years of maintenance and feel very lucky to be doing well so far.

I'm only too aware though that things could change at any time and I want to be prepared with as much information as I can about what options are available.

I'm really glad you found you didn't need HIPEC and hope you're still doing really well.

Good luck to you too.

L x

[Bettyxxx in reply to Jacky5]

Hi LizYes i am still well, 1 hiccup and operation 4 yrs ago but otherwise well, i do think its a lottery as to how we respond as i dont do anything extraordinary, i drink alcohol and eat sweets, i have just been lucky. I only took Niraparib for a year as the side effects were too bad for me but i think that year may have helped too

Good luck, message me if you want to know name of guy i saw

Regards

Diane

[Jacky5 in reply to Bettyxxx]

Thanks DianeI think you're right.

I started off trying so hard, went veggie, cut out dairy stopped alcohol and started long daily walks and drinking green tea.

I still walk but have reverted back to my old habits except for milk which I just don't seem to enjoy in tea anymore.

I just try to eat and drink sensibly.

Really glad to hear you're doing well and long may it continue.

Thanks again.

L x

[Heatherslade]

Hi and yes I had HIPEC at Christies about 5 years ago part of cytoreductive surgery for bowel cancer. I was referred and it was a life saver as It was discovered I had ovarian cancer so this operation was the best one possible for that cancer. How lucky for me. It was done on NHS.

[Jacky5 in reply to Heatherslade]

Thank you for replying.That was lucky indeed. Do you think you'd have been offered the Hipec if you had presented with just the ovarian cancer or is it given more routinely when the bowels are involved?

How have you been since the treatment?

[Heatherslade in reply to Jacky5]

Not certain but don't think I would have been offered it just for ovarian cancer. Because my cancer count kept rising even after removal of part of the bowel and chemo and PET, CT and MRI scans seemed ok my then oncologist thought cancer could have spread to peritaneum. Probably just given a debulking op and the chemo if I presented just with ovarian cancer. It is an expensive operation and will only be done I think if the patient is fit and no obvious tumour spread. My surgeon at Christies said that I couldnt have had a better op for ovarian cancer as it happened and so then got referred back to my local hospital for further chemo for ovarian cancer. Struggled more with that regime than with bowel cancer chemo. Since then I have been very well, back to full fitness and my CEA and CA levels so far have been normal. My next check up is in a couple of weeks so hope my good luck continues and like so many others who post on this forum try to remain positive. As I said before I was very lucky and my treatment was second to none.

[Jacky5]

I'm really pleased you've been doing so well and long may it continue.It does seem you've been really well looked after and I think it makes all the difference to know you've got a great team fighting your corner.

Every positive story gives me a boost so thanks very much for that.

Hope all goes well at your check up .

Liz x

[CFVD]

Hi Jacky5, I enquired about this with my wife’s surgeon (at a major London teaching hospital and cancer centre) last week, as I’ve been interested in finding that info out too, and I was told it is not currently offered on the NHS - and there is a bit of a race between a number of hospitals to make that happen.

So I assume that the hospitals that currently offer it in the UK do it on a Private basis. Let us know if you find out otherwise!

All the best!

C

[Jacky5 in reply to CFVD]

That's intersting. So your wife's surgeon implied Hipec may become more readily available?I've read conflicting reports about the effectiveness of Hipec but feel that when/if my cancer returns I want to be prepared, informed and ready to be as aggressive as possible.

Of course my Oncologist will probably have other ideas!

What I find confusing is that the Dr's are I believe supposed to be bound by Nice clinical guidlines but certain Drs/hospitals seem to have more of a free hand.

Anyway, wishing you both all the very best and hope your wifes treatment goes very smoothly.

Liz

[Terra1]

Hi Jacky5

Just wanted to say thank you for highlighting options I'd never heard of previously - agree totally the time to learn is in the calm before it returns. I'd heard of IP chemo but not during surgery. So surprised it appears routine in USA. In the UK isn't even a 2nd surgery is unusual - preferring PARP inhibitors or a 2nd chemo series instead?

I've not come across anything negative in a few searches re HIPEC so far, so am surprised at comments to that effect. Please share any more you're aware of. NICE report re HIPEC includes studies re OC so hopefully their outcomes will be as positive as USA and treatment be available accordingly.

Hope you continue not to need it, in any event.

Best wishes 🙏

[Jacky5 in reply to Terra1]

You're very welcome.There was a post by Golfjazz a week ago about PIPAC, a similar treatment . You might find that interesting too.

I squirrel away anything I think may be useful later.

Yes second surgery doesn't seem the norm here does it?

One of the Ovacome webinars mentioned that research has shown 2nd surgery, where all visible disease can be removed has given better results than chemo alone.

I mentioned this to my Dr (I was keen to have a scan sooner rather than later for recent abdominal pains ) and he was quite dismissive .

It seems he is rather cautious.

I'm currently taking Olaprib for 2 years maintenance as I'm BRCA 2 positive.

The course ends in Dec and I feel very lucky to have it and that my last scan was NAD. However I'm feeling anxious about giving the tablets up.

I understand that currently, Olaparib will only be given once but I did find a trial that's recruiting until at least next year looking at repeat Olaparib treatment so I tell myself that might be an option if I relapse soon.

It just pays to keep researching doesn't it?

And of course there's always lots of info popping up here.

My husband thinks Im obsessed and there is of course an element of don't spoil today worrying about tomorrow so I'm try to be sensible!

I do hope your doing well.

All the very best to you

Liz. x