Ask about CRS and HIPEC NHS

Hi 

Welcome to the forum . Sorry to hear about your situation . The NHS does have a few specific places that do Hipec . 
https://www.bowelcanceruk.org.uk/news-and-blogs/research-blog/pipac-a-clinical-trial-looking-into-a-new-type-of-treatment-for-advanced-bowel-cancer/

I have included a link to an article in bowel cancer U.K. where a dr whose name seems to come up a lot has provided information.

Christie’s , Basingstoke and I think Imperial do some Hipec referrals but that may not be exhaustive . Others may do it to .

Under the NHS you are entitled to a second opinion . Most people have chemotherapy first which can be a good plan to reduce the size of the tumours where possible . Better surgical margins is always desirable!

However your GP or consultant can help get a surgical consultation with a specialist. Interestingly enough even with Hipec surgery some people have reported that some hospitals have a more conservative criteria than others so might be worthwhile investigating.

We had a consultation with a surgeon . Keeping your expectations grounded helps but it is very informative to find out what their views are even if it’s just to confirm you are on the right pathway just now . Chemo turned inoperable to operable for my mum so hang on in there .

Also good on you for getting informed and advocating .

Take care ,

Court 

Hi Siu.  I was diagnosed with stage 4 bowel cancer in October 2019. It had spread to my ovaries and my hospital told me they couldn't operate,  it would be palliative care and chemo. After doing some research,  I had a private consultation at the Christie hospital in Manchester.  A fantastic surgeon, Mr Omer Aziz,  said I met the criteria for HIPEC surgery and he did it on the NHS. He said they often did chemo before but in my case it was better to operate quickly. It was a 9 hour operation an I was in hospital for 12 days. They got all the tumours and washed my insides with the hot chemo. I was very lucky to not need a bag. They found cells in some of the lymph nodes they'd removed so I had 6 months of chemo at my local hospital.  Mr Aziz said it would be a cure and hopefully he's correct.  My tumour markers are 1.3 and the follow up scans and colonoscopy have been totally clear. You should definitely ask your consultant to refer you and hopefully you will have the same wonderful outcome.  If you want any further information,  just let me know.  I know how devastated you are feeling but there is definitely hope out there. Good luck xx Cathrine

thanks Catherine, it’s positive post for me. I am very worried what the oncologist will say next week. I am not sure will he refer me to Christie. Everything a bit slow and I am in pain. I haven’t been on chemo yet. Is it right that Chemo needs to be done first then they will consider to refer me to HIPEC? That meant I still need to wait for a few months. Its a lot of uncertainty that’s worrying me. I have a stoma bag already because of bowel obstruction but they didn’t operate on the cancer lump for fear of further spread. I am getting used to the stoma bag not brother me too much. Just want to treat the cancer ASAP.

Hi Court, thanks for the advice. Keep waiting for the treatment is hard. Being told about the chemo nearly 6 weeks ago but nothing done yet. Loosing lots of weight and not sure what to do. Just don’t know what to do if oncologist not willing to do the referral. 

My surgeon at the Christie said they did usually do chemo first to try and reduce the tumour before surgery but he said in my case it was better to operate as soon as possible. 

I think you can ask to be referred anywhere, I was told they would review the details to see if they thought they could help. You need to keep at them, if I'd done what they told me when I was diagnosed,  I dont think I'd be here now. They removed a grapefruit sized tumour from my ovary, part of my bowel, spleen, peritoneum and appendix.  Now I feel great. 

Keep going Siu x

Hi 

It is totally within your rights to request a second opinion and if the oncologist does not assist your GP can help you .

Given  has had surgery first there would nothing stopping you initiating the process and letting the professionals decide what order is best for you as an individual. If you feel unable to ask in person as that is challenging for some people and it’s a big system to navigate you could send an email just now to your consultant asking if you could be referred to a hipec surgeon . You could ask for recommendations or suggest your own . Then you can follow up by discussing in person .  The helpline staff will guide you through the process if it’s something you wish to consider . I actually found it really helpful to get to know the surgeon a bit and get your face known ! Each person is different but it is entirely up to you but I would definitely let them decide what order is best for you in the light of what  has shared .

Take care ,

• Court 

Hi Court, saw the oncologist on Wednesday and he will start immunotherapy treatment for me in two weeks time . He said I am not suitable for HIPEC and said immunotherapy even better. That’s the best thing I have heard in these few months. So anxious and painful when waiting. Like rollercoaster. Let see what happens next. Finger crossed 

That is great news indeed ! Have you followed  or Moi2? Hopefully they will be able to give you some insight into it !

It gives me so much encouragement to see people getting this treatment ! For years I would read up on the effect it was having in the US and my heart would drop that it was not happening here !

Now that’s changing and the benefits are really showing !

Hope it’s given you a big boost and you can relax for a bit in the full knowledge that a good plan is in place !

Enjoy your weekend !

Court 

Hi Siu I have just had my 14th round of immunotherapy (Nivolumab) started every 2week then went to every every 4 weeks. My side effects have been itching and constipation and the last few weeks an ulcer in me mouth.

I've been stable for the last 9 months. The main thing is to stay active and positive and eat a good diet. Good luck.

Hi Moi2, thanks for your reply. I will have the same Nivolumab like u once in the fortnight to see if its works. Just want it to have done ASAP for I can feel my cancer getting deteriorated. My cancer cell is rare one so I am on the advanced stage and deteriorating so quickly. Hope the treatment works .