Were you aware of pseudomyxoma perito... - Pseudomyxoma Surv...

Pseudomyxoma Survivor

Were you aware of pseudomyxoma peritonei before you were diagnosed?

AngelaPMPS profile image
AngelaPMPSPartnerPMPS Volunteer
12 Replies

We know that pseudomyxoma peritonei (PMP) is a rare disease, we anecdotally hear of patients who already know another patient or know of another patient. Did you?

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AngelaPMPS profile image
AngelaPMPS
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12 Replies
PMPCass profile image
PMPCassCommunity Champion

It’s funny you ask that because I think a woman I worked with husband had pmp. She didn’t say that’s what it was but when I think back to how she described what it was doing to his insides, sounds very similar to pmp.

AngelaPMPS profile image
AngelaPMPSPartnerPMPS Volunteer

After I was diagnosed both a friend and a relative knew someone who had been diagnosed.

framed profile image
framed

Angela, before I was diagnosed with PMP the surgeon who saw me was the surgeon who had operated on me for bowel cancer 6 years earlier. After he saw my CT scan he said it was not something he could operate on, but they, the MDT, thought it was cancer but they were sending my case notes to Basingstoke. My immediate reaction was, "Why Basingstoke?". The surgeon explained the significance of the work of Basingstoke but it was not until we went to see Mr Moran at the Peritoneal Malignancy Institute that we realised what PMP was and the treatment for it. Since my operation in 2017 I have meet the mother of someone with whom I worked who has PMP, that I did not know about and I have met the brother of someone who had PMP.

gascoigne profile image
gascoigne

I had my operation for Pseu 14 years ago, I had never heard of it and have never met anybody that has had it, Basingstoke were wonderful and I still attend. It would be interesting to correspond with others that have had it to sort out those minor problems that still are a problem.

Bottle profile image
Bottle in reply to gascoigne

Hi Gascoigne, I have just joined this group. After three years of my PMP operation, I am beginning to reach out. I have been suffering from severe stomach problems that is affecting my physical and mental health, plus relationship with my family. The doctors don't know anything about PMP, so I am given the usual antibiotics etc. Do you have stomach related problems?? Would be interesting to know, as everyone I spoke to at the hospital who had the operation seem to be having stomach related issues, except the ones who had their bowel partially removed.

Would be grateful to know how the operation affects someone else health.

SusanPMPS profile image
SusanPMPSPartnerPMPS Volunteer in reply to Bottle

Hi Bottle - I've had half of my bowel removed and would say that for me the build up of gas gives me the biggest problems. It doesn't like to escape down the way and can sometimes take a while to work its way out via burps. Eating small and regular helps me, as does eating a healthy diet and walking.

hummingbird16 profile image
hummingbird16

I had never heard of it before diagnosis, however after diagnosis found out about a few people who also had been diagnosed through our Facebook group Pseudomyxoma Survivor

XRSam profile image
XRSamCommunity Champion

Hi, I had never heard of it despite being a radiographer for 30+ years. I googled it at work after being told I had it, Stopped googling at work when first page was cancer research page!

Yes I was aware of it as I'm a medic and had learnt about it over the years but never had a patient present with symptoms. I knew it was pretty rare, and realise how important it is to improve awareness of this condition amongst the medical profession as well as the public. Basingstoke team taught me so much!

marcopon5 profile image
marcopon5

No ~ I'd never heard of it ~ was sent home originally when I had my appendix pain ~ they thought it was muscular/skeletal pain or gallstones ~ after the op they told me it was longer and more involved than normal ~ and that they had sent mucus for diagnosis ~ but it was a bolt from the blue when they told me at Stoke Mandeville that I had a rare form of Low grade ( surely a misnomer ) Pseudomyxoma ~ out of all appendicitis cases ~ usually one every 10 years at this hospital ~ lucky me !!

Petrolhead276 profile image
Petrolhead276

I was not aware of my having PMP until I was diagnosed after attending my local NHS hospital with pains in the appendix region.

I have posted a full story of my journey from diagnosis through CRS/HIPEC and my recovery in a couple of Apoendix Cancer/PMP Facebook groups.

I even got my respiratory consultant to check recent scans and only after telling them I had the condition did they tell me they could see indications in the last 2 scans.

Traveller72 profile image
Traveller72

No. Never heard of it before