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.

Pmp surgery

Flowery
Posted by

Hi all I am pretty confused and stressed at the mo so bear with me. I had surgery to remove my appendix and part of my large bowel last year due to a leaking mucin tumour, I’ve since been seen at the Christie for a follow up and have been advised to have a further surgery which is pretty intensive , belly button, gall bladder, ovaries all to be removed and localised chemo to be applied to the area to prevent anything from developing further, where my confusion comes in is in the fact that the few specialists I have seen have all said that this isn’t a cancer ??? Every peice of info on this subject however calls this condition a cancer. Apart from being confused I am also really worried about the upcoming surgery , has anyone else on here had this surgery I think it’s called a complete cytoreduction. 

Thank you for any help x 

pmpsurvivor
Posted by

Hello Flowery

Nice to 'meet' you but I'm sorry you have to be here. I've had cytoreductive surgery and heated chemotherapy - not at the Christie but at the other hospital in England that treats PMP, the Basingstoke Hospital in Hampshire. 

There's still a lot of confusion out there about the naming of PMP - amongst surgeons and amongst pathologists. The condition starts with a tumour in the appendix. If the tumour was in any other organ, it would be removed and treated as a benign tumour. Because it's in the appendix, it bursts through the wall of the appendix and spreads cells all around the abdomen and then more tumours start to grow on the outside of the organs. If untreated, the organs can become squashed causing all sorts of issues including bowel obstructions. That's why some say it isn't a cancer and some say it isn't. 

If you look at it under the microscope, it isn't a cancer but it behaves like a cancer so is it or isn't it? I'm sticking with yes, it is.

Hope that helps rather than confuse you even more. I remember how bewildering it is when you're told you have this rare thing that hardly anyone's every heard of.

Angela x


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
Flowery
Posted by

Thank you so much for your reply , you’ve made lots of sense   So yes I would agree with you that it is a cancer, I have the cytoreductive surgery scheduled in for October and a consultation apt coming up this Friday to discuss the plan to go into hospital , I’ve spent the best part of the day looking at info on the internet and come across a few articles saying how dangerous the surgery is and the aftermath which has terrified me. I am considering asking the consultant my options to just wait and watch instead of surgery as I am pretty early on in the stages and the surgery has been advised as a prevention of anything developing . I must admit I am not looking forward to the early menopause ( I am 38) after having my ovaries whipped out waaaa

pmpsurvivor
Posted by

The thing to remember is that we're all different - you're younger than the average age at diagnosis (which I think is mid-50s) and the disease has been found at an early stage. They're both things in your favour. Talk it over with your consultant but don't be put off - there's lots of positive stories out there!


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
Flowery
Posted by

I will do , thank you you’ve made me feel so much better xx

pmpsurvivor
Posted by


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor