cytoreductive surgery / HIPAC

Hi ,

Sorry to hear your current situation . You have had quite a rough time of it . I sometimes think in a stage 4 situation you do start to get a feel of what works for you . Sounds as though the Ablations where not great for you . My own mum prefers surgery and seems to get a good return to normal function quite well .

Firstly I would say that I personally know little about it apart from reading others experiences , however what I have gleaned is that there are a few centres of clinical excellence in England and they all seem to have a slightly different criteria. So maybe worthwhile asking for your scans to be reviewed by them all .

Hipec is carried out by specialist surgeons and that’s a good thing . You want someone with experience. I have followed a few peoples journey and they have gone on to do well . Tumour load counts but they go into all of that . 

I am going to suggest you have a look on Bowelcancer Uk forum if you have not already as they have a few active threads where people have named their surgeons and it might be a help to know exactly who to refer to and get a feel for the criteria . They are a good bunch over there too and can given you first hand experience. 

It would be great to keep this sort of information active over her too . Keep the knowledge up but I want you to get the best advice in your situation . 

Can I just encourage you . If you click on my user name you can read my mum’s full history . She too had a few intense years of treatment, disappointing experiences and set backs but surgeons got there with her . 

Ten years later she continues to do well and was delighted to get the moss off the garage roof last week at 77 . 

Best foot forward and keep in touch .

Take care ,

Court 

thanks for that @court. that's good advice and it's so encouraging to hear real stories about others with wide spread cancer who have such good recovery. you have pointed out a few things I had not thought about. e.g. when I go to get liver/lung etc surgery the surgeon is not a specialist. This I think was the major issue this time was the surgeon made a decision that was not necessarily best for my long term care - I am NOT happy with that liver team in general! If a surgeon is not only the specialist for whatever organ, but also in the oncology/HIPAC I would feel much more confident I used to be given options by my consultants and would ask for their opinion as I felt they should know better than me...as time has gone by I don't feel the same and myself and family have got smarter...read up quite a bit I have to say my oncologist at Barts is still great but I feel the problem in the system is in the MDTs and when I'm "handed over" to another surgery team the oncologist is no longer the lead on my case. This does not make sense to me, and in fact as my cancer was initially colon, I didn't even have an oncologist until I had the post surgery chemo. The disease is cancer so the lead should be an oncologist from the off surely? I haven't read all of your details about your mother's case. I will do so now as I defo need a bit of optimism. Thanks again for getting back to me I will update here as I find out more about Cytoreductivre surgery with HIPAC : it's been around for quite a while so first of all I'm not sure why it's not on the NHS , also it seems results are v. good and in fact it is less hard on the body than chemo (especially in terms of bone marrow+white blood cells which are the things that really can't be helped by diet etc) anyhow that's enough for now - hopefully I will get an appt. next week (all dependant on how quickly I can chase that biopsy from Royal London) so wish me luck!

Hi ,

Hipec is definitely available on the NHS . You just have to meet the criteria for their unit . Your oncologist can ask them to review your scans and I think your GP could help you get a second opinion .

You might like to phone our helpline 0808

808 0000 to confirm your best approach in getting them reviewed .

I totally agree that you need to be reviewed by the surgeons who are working as specialists in this field . 

My mum’s oncologist did not want her to have liver surgery but another surgeon referred her on . It truly ended up being life saving .

I think some people get reviewed privately . The name of that surgeon is on Bowel cancer Uk .

But that is really all I know . There seems to be a criteria that involves tumour burden .

take care ,

Court 

My welcome to the online community also and like court I have no knowledge of Cytoreductive surgery combined with HIPAC but I was able to find some information for you.

As you mentioned the Royal London hospital I am assuming that it is the one at Whitechapel so it maybe worth your while contacting the  critical cancer centre at St Mark's Hospital over at Harrow.

If you open up the green text above for St Mark's it gives a bit more information  in what they specialise in and if you open up this Critical Cancer Unit you will find details of the unit, it gives details of the medical team, criteria and contact numbers and as far as I can see the procedure is carried out under the NHS

I also believe that the Basingstoke Hospital carry out the procedure, I cannot find any reference to the Christie Hospital Manchester only carrying out the procedure privately but St Mark's would obviously be nearer to you and easier for your family to visit. The hospital is within the grounds of Northwick Park Hospital.

The Cancer Research web page has some more information on the procedure.

I do hope that the above information that I accessed from the NHS website is correct and is helpful to you and enables you to have meetings with a team who all work together in one unit. Hopefully you will meet the criteria and progress forward to successful surgery and a renewed quality of life.

Please keep updating on this page letting us know how you are getting on.

Ian

Hi. My husband had cytoreductive surgery with HIPAC back In July 2019. He had a massive tumour in his bowel that had spread through the cavity. We were extremely lucky that our local hospital in Sutton Coldfield, Good Hope, is one of the 3 centres in the country that offer this type of surgery. The way it was described  and the way I interpreted their information was that the cancer is like mould it sends out spores that can’t be seen to be removed but are there and will continue to grow therefore meaning repeat surgeries to remove them. By putting heated chemo into the cavity and leaving it for an hour the hope is that they will be ‘zapped’. Our surgeon Dr Sherieff ( a locus at Good Hope) was amazing and spent a lot of time explaining things to us.

He recovered well from the surgery ( he is only 50!). Now he is 3 treatments into intensive chemo because there was lymph node infection, and waiting for a scan soon to see if there has been any spread. 

Sorry i can’t tell you any more at this point. 

I did research about the surgery, at the time, there is information with a link to a video about the team at Good Hope.

hgs.uhb.nhs.uk/.../

Good luck with your journey, I hope you find the answers you are looking for x

this is great thanks so much ... from there being almost no options to only private now I am finding I might still be able to get it on the NHS. I am definitely feeling more positive than the short "this can't be operated on" which was the last info I have from a surgeon (admittedly a registrar) in Royal London. I think the more places I know can do it and have successfully done it the more chance there is of finding somewhere to be referred to.

Good luck with the chemo - I have been through a couple different types now - and top tip I found was the anti-sickness tablets are musch more effective if you have even a bit of protein in the system first so try to nibble a bit of cheese (or your preferred protein shortly before taking!)

Hi court

sorry to bother you again but you say "The name of that surgeon is on Bowel cancer Uk ." can you give me a link or the name - I can't find it

also on your profile you say

"I stay here as we found the benefit of linking in with specialist centres of clinical excellence and hope others are informed of their benefit. "

I'm wondering where that is and what those centres are.

If you would rather PM I have done a friend request

Hi ,

I am going to ask to link in the stage 4 forum on the bowel cancer forum . She is really good at this .

I will get the centres of excellence for you . 

Take care ,

court 

Hi ,

I am getting two centres for Hipec  Basingstoke and Christie’s but St Marks May do some as well . 

I think you approach the hospital and they have a special MDT meeting . Your oncologist should help you get a second opinion there if that’s your desire . 

Take care ,

Court 

thanks so much

you've been really helpful