Pseudomyxoma Peritonei

Hi .Can I offer you a warm welcome to the Macmillan Online Community. I’m sorry to read about your diagnosis but I’m glad you’ve found us.

My cancer is different, but a cancer diagnosis of any kind makes us ask lots of questions, causes confusion, stress and probably emotions we’ve never experienced before. We all agree, the endless waiting for tests, results and Consultations is so debilitating so to be able to talk to other people who are in the same situation will help you get through this.

The Macmillan Community is organised into dedicated support hubs. You’ve joined our Peritoneal cancer group, this will be a good place to meet up with others making the same type of cancer journey.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. 

The Macmillan Support Services also provide lots of information, support, financial guidance or just someone to listen.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Sending you welcoming hugs B xx

Hi PMP

imwas diagnosed last December and had my surgery in March in Basingstoke (cytoreductive and HIPEC). I’m sitting in outpatients at the moment, waiting for a post op check up as I’m experiencing some discomfort. 
I’d be glad to speak with you about this as it’s largely unknown, even in the cancer community. 

Thank you for replying - so pleased you bothered - I’m very new to this site & not finding it easy to navigate at the moment 

Hope the appointment @ Basingstoke went well & all is good. You’re surgery was only a few months ago so really hope everything is ok. I wasn’t diagnosed until after major abdominal surgery @ Royal Surrey Hospital then referred to Basingstoke - it was an awful shock & very scary.
Going this week for blood test & CT Scan as Mr Mohamed has put me on ‘watch & wait’

So difficult to find anyone to talk to about this pmp cancer & how to treat it - a lot if people just do not bother to try to understand this one!  Anyway, good luck, keep safe & be positive 

1. Hi. I'm new to this forum and exploring routes to find people in the same situation as me. I became I'll in December 2020, fast forward to February 2021 and I've had Cytoreductive Surgery and HIPEC. Found it all very scary. The initial hospital I was admitted to wasn't very informative with my diagnosis or in giving me a diagnosis apart for telling me they were liasing with specialists at Basingstoke. I didn't know what Basingstoke speciliased in until I looked into it myself. It was scary reading about it all. it wasn't until an actual appt at Basingstoke with Dr Mohammed that I actually felt more like I had a full diagnosis and was shown scans and could see what was wrong. I am a visual person so I said I want to see what I can from the scans etc to get a better understanding of it. I found the Basingstoke team exceptional for me and anything I needed to know I could contact the nurse specialist or the specialist to ask questions..When I had my op, they were fantastic and such a support for me (especially as no visitors in hospital). I am now 5 months since my op and found the recovery very hard. Especially as was rare and not knowing where to find people I the same situation. I m just about to start chemo as the next step and the McMillan chemo team have referred me for counselling which I have only had one session so far and was sceptical to begin with, but found it a great benefit. I shelved my actual feelings as such a quick turn around from first admitted to hospital, diagnosis, op etc that I didnt and still not quite processed that it's all real. If you ever need to talk or ask questions I am happy to try and help. 

Wow your experience sounds very similar to mine although I’ve not had CRS & HIPEC yet. I’ve had major abdominal surgery (Sept 2020) & then referred to Mr Mohamed afterwards - we are ‘watching & waiting’ Three weeks ago had CTScan with contrast - still waiting to hear from Basingstoke !! The waiting is awful - such a horrible cancer to understand & treat. Good Luck with counselling - hope you can rest & recover whilst enjoying this lovely weather

I hope you don't have to wait too long.

I had never heard of it and I think the hospital I was in when I went to A&E initially when they thought it was pancreatitis until I had a scan, and they saw things that didn't look normal, that they were in the dark about what was going on too, and so that made it harder for me. It seemed such a long wait until I actually saw someone one to one at Basingstoke, and when I did it was nice to finally get some answers. I had primary muscinus tumour 13x7 cm at end of bowel. Apparently it had been there years as slow growing but I had no symptoms whatsoever. That then had caused spread and had gone to my ovaries etc, spleen, diaphragm, etc.

I ended up with a score of 12 so was below the 15, just. I ended up have tumour removed, right side of bowel removed, full hysterectomy, abdominal lining removed, right diaphragm removed and they managed to burn it off my spleen so they saved that. Then the HIPEC.

It didn't all sink in until quite a long time afterwards, and since my counseling started I don't think I have still fully absorbed it. 

I have been very open in discussing it with friends and family and so thought I had got all my feeling out and actually I don't think I have. It's very hard as no one actually I know has been through this and it's hard to find people that have as it rare. Find people that have had bowel cancer or ovarian cancer etc but it's more than that. 

I have found the bowel issues and recovery the hardest. I just had the Op and didn't think about the recovery. It's been a long process and it's been one step forward, two back. My wound opened up in two places and one wound has still not healed. My chemo has been delayed because of this. I am hoping chemo starts this week, but think it may be delayed again as wound still not healed.oh...and the piles!! That just added joy to my life!!

But me today against how I was a few months back is soooo much improved. At the time you don't think you can get through things but wow I feel so much more myself and normal. So you can get though it no matter how low you feel at times. Xx

Hi Road Runner. I had a burst appendix in Oct 2020 which was r over. Was told in December 2020 that it was PMP. Had cytoreductive surgery in The Hampshire. Links in Basingstoke by Mr Mohammed. Followed by HIPEC in March 2021. I’ve noticed that other people are having chemo post surgery but I haven’t been offered anything like that. Also noticed that other people so much more informed about lots of numbers on blood test results and cancer stages. I haven’t been told anything or offered any blood tests yet. All I know is that the original finding was a high grade mucinous neoplasm.  Is this anyone else’s experience ?