Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

newbie

cantthinkofone
Posted by

Hi everyone,

I'll start with a bit of background - had severe abdominal pains in 2012 and ended up with an appendectomy. Was later diagnosed with LAMN - and they thought it was confined to the appendix. My last scan a month ago showed mucus and they now think I was misdiagnosed and that cells were left outside and its grown. They are basically deciding tomorrow if I will have surgery and HIPEC (the nurse basically said yes).

I've gone through all the emotions that I'm sure everyone here has- fear, anger, shock! Thoughts of leaving my children etc! googled statistic after statistic and my head is just all over!

I know I shouldn't but I keep going over all the 5/10 statistics for recurrence etc. If they catch it early does it give a better chance?  

I have had a 5 year disease free period without HIPEC so having it now gives all the statistics from that date to 5/10 year disease free. If they had known 5 years ago I had PMP would the statistics have started then? Do they end up the same anyway?! 

I actually don't know if I'm making any sense!

I suppose i'm wondering if, even though theres a small about of mucus right now, if my chances of long term survival are better if i have HIPEC earlier or they watch and wait then do it?

Kelly

Dreamthief
Posted by

Hi Kelly  /   

Well, if nothing else your username raised a smile :)

Sorry to read you have been lumbered with PMP... If you click on this link to the groups 'Discussions' page you will see all the questions and topics raised. They only stretch as far a 7 pages as PMP is very uncommon, meaning the group isn't that active :-/

Look in particular for any discussions started by  as this is also the name of the UK Support Website for PMP patients.

If you as yet haven't checked out their site click this link PMP Survivor Org - They also have a members forum so you get factual info from those is similar situations.

Macmillan also have this Extensive PMP Information Area you could have a look through to gather as much info about HIPEC to help you decide if you wish to go that route.

As I have 'tagged' pmpsuvivor they may well reply but the site is a little buggy at the moment - so it may take a while.

Hope this is of some help at a tough time kelly.

Take care, G n' J

cantthinkofone
Posted by

Hi,

Thankyou for the reply, will check out all the links.

:)

Kelly

pmpsurvivor
Posted by

Hi Kelly

Sorry to read about your diagnosis and the issues you've had. Pseudomyxoma peritonei behaves differently in different patients. There are known factors which relate to the prognosis such as to whether the disease is low or high grade and there are unknown factors. In my case, it's thought that my appendix burst 10 years before I was diagnosed. That's 18 years ago now.

It's very hard to read any statistics online as there aren't many of us about and a lot of the studies are relatively old. Factor in that diagnosis and surgery happens at such different points in the spread of the disease for each of us, the statistics become almost irrelevant. 

You need to focus on how the disease affects you and how you can be treated. Yes, you'll have a lot in common with other patients but when it comes down to it, they ain't you. 

Are you being treated at the Christie?

Angela x


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
cantthinkofone
Posted by

Hi Angela,

Thanks for the reply. I think the past couple of days have been better. I feel more positive and in a weird way its just taken time for it to just sink in. We all hear the word cancer and it just feels surreal for a while! But your right, as my husband says, with a cancer so rare its hardto really know what will happen, and yes the studies are old- one was actually 2002! 

Yes Im at Christies and thankful its only an hour away to as  have young children so  makes  it easier!

Thanks 

Kelly