This was on may CT scan a few weeks ago, is there any treatment/surgery possibility to kill this off, or is it inevitably going to get me? I hear about CRS and HIPEC for Peritoneal metastases, might that be an option?
I have included a link to a hipec leaflet from St Marks to give you a feel for what they are achieving in terms of managing peritoneal spread . Additionally Christie’s , Basingstoke and i think Imperial also do it . Not sure about others as I live in Scotland but their names come up on the forum . Another aspect people have previously reported they have slightly different criteria at some hospitals . Some surgeons names come up a lot ! So might be worthwhile having a referral to them to let them review your scans . Chemo also has a role to play so I definitely is not without hope !
But just thought I would tag in the leaflet as it seems more appropriate to get information form the source .
I was diagnosed with peritoneal metastases February 2020. CRS/HIPEC is a procedure with curative intent, but not everyone is considered suitable. Generally speaking spread would need to be confined to the peritoneum, and tumour burden limited. The vast majority of the procedures are carried out at Basingstoke and Christie’s, Manchester. Referral typically being on a North/Sourh divide. Next is Good Hope, Sutton Coldfield serving West Midlands. There are
3 in London, Imperial, St Mark’s and Dagenham, Havering and Redbridge, and one in Scotland,
Ninewelks, which seems to confine itself to Tayside area.
The first thing to do is ask your consultant and see if you can get a referral, in my case, was told too far advanced, but then asked the question what if I made a good response to chemo and got a referral to Basingstoke, who predictably turned me down. However got a 2nd opinion from Jamie Murphy, Imperial College, who agreed to operate.
see what happens first after discussing with Consultant. I would be able to advise if turned down wish to try a second opinion.
Hi Diplock, I hope you don't mind me asking, but how are you getting on?Did you have the hipec and what were your circumstances?
I'm at my wits end with worry. I had surgery 2 weeks ago to remove cancer from my bowel and 3 lymph nodes. Everything else looked OK while they were operating, but while they looked at the lymph nodes under a microscope, they saw a "tiny spot of cancer in the peritoneal" They have referred me to Basingstoke to see if I can have hipec, but the wait is killing me. I've googled it and put the fear of God into myself.
I'm sorry to ask, I'm just looking for any sort of positives you may have?
My experience with Basingstoke was not a good one, no doubt exacerbated by the fact that my surgeon did not consider me to be a suitable candidate, and Covid. After 6 months had heard absolutely nothing, so followed up in a letter to ask what was happening, and got a response from my Oncologist to say that they could not offer me anything. No explanation was given, but I later obtained a copy of the one sentence rejection stating that it would not be of benefit due to small bowel involvement, which the said would prevent complete cytoreduction, I.e. removal of all cancer.
it is most likely that you would be a more suitable candidate than me, and will be given serious consideration. However in view of my experience do not allow matters to lapse, and follow up to find the status of your referral and get a timeline. The usual procedure is to be considered by their MDT, but in my case that was deferred until I been through 4 sessions of chemo and been re-scanned.
I hope things go well with your Basingstoke, but it would be very worthwhile thinking about a Plan B. Basingstoke are probably the most stringent of the providers when it comes to criteria for selection. A number refused by Basingstoke were taken on by Christie’s the other major centre. However, it is known through forums that there is a London based surgeon
Professor Jamie Murphy, who will take on more difficult cases. I got a referral to him for a clinical PIPAC Trial, which is intended for those not suitable for HIPEC. Unlike Basingstoke, their response was immediate and investigation very detailed. In no time had been considered by their MDT and invited to London for a consultation, although Covid caused this to be a telephone conduction. I found out that my pci, peritoneal cancer index was 10, well within the threshold for surgery, and after further scans and laparoscopy agreed to operate.
I had HIPEC with curative intent on 27 April and complete cytoreduction achieved.
It is helpful to have a Plan B, so give below the contact information for Professor Murphy:
WOW, so did you have surgery and then hear nothing for 6 months? Is that when you were having your chemo? Crikey I was expecting to hear within a couple of weeks, so thank you for preparing me for that.
If you don't mind me asking was yours advanced? I'm not sure I'll get offered it, with mine being so small?? Did your chemo have any effect on the peritoneal cancer?
I'm glad you got your surgery in the end and hope you are well now?
Thanks so much for the contact info as well, that's kind of you. At least it gives me a back up plan.
My initial bowel Cancer operation was on 10 April 2018, Stage 3, Tumour size 4, which meant that it had penetrated the bower wall and 1 out of 36 lymph nodes examined found to be infected. 12 sessions of adjuvant chemotherapy followed which finished November 2018. The first sign of recurrence was February 2020 as a routine blood test known as cea,
carcino embryonic antigen, gave a higher than expected reading and peritoneal mets diagnosed by ct scan. That was multiple deposits, the largest being 4.6 centimetres.
Can’tt emphasise too strongly that you need to find out exactly what is happening about your Basingstoke referral. In my case it was 6 months wasted, as I had no plan B. It is possible in your case that the plan may be to see how you respond to chemo and review. If necessary, be very assertive in finding out what is happening, and ask questions.
Hi there, how are you doing? Hope you're keeping are well? I was just wondering, when you contacted Jamie Murphy about hipec, what information did you include? Do I tell him my full medical history or just basic info until I hear back from him. I feel like I'm being fobbed off by my oncologist who just wants to keep me on chemo,even though my cancer is low volume, but in 2/possibly 3 places. Thanks in advance. Xx
They will contact your team and ask for access to recent scans so a brief history of your treatment and diagnosis should be enough to get the ball rolling .
You might want to mention where you are treated and the consultant so they can contact them for info .
Brilliant! Thank you so much Court. I'm having a bit of a nightmare at the minute. Basingstoke wanted my cancer stable, before considering hipec. I've just had 4 rounds of chemo which has shrunk my liver met and the peri met couldn't be seen on the ct scan. However my ovary has enlarged and they're not sure if it's cancer or fluid? My oncologist had now said surgery wouldn't be possible because it's in 3 areas, even though one isn't detectable and the ovary might not be cancerous. She wants to keep me on chemo and it's knocked me for 6. Hope you and your mum are well? X
