Yes me!!, I dxd Jan 2007, so far had 3 major surgeries last one was September last year currently disease free, are you in the facebook pmp group??, if you are interested drop me a message and I'll get you added to the group if you are interested

Good for both of you!
OK, here's my lack of knowledge showing here, what's pmp?

Pseudomyxoma Peritonei, mucin producing tumour usually of appendiceal origin, the appendix bursts and the cancer seeds into the abdominal cavity (peritoneum) and tumours grow and produce mucin filling the abdominal cavity with mucin leading to a condition called "jelly belly" the mucin can solidify on the organs (liver, kidneys etc) and all the mucin can crash thoughs same organs causing death.

A technique called the "sugarbaker" technique named after the surgeon who pioneered it is regarded as the only viable treatment but is still generally considered experimental, basically involves opening you up down the middle removing all visible tumours and affected organs (gall bladder, spleen, omentum, peritoneal lining etc) and then flushing the whole abdominal cavity with heated chemo (HIPEC), procedure takes around 6 to 12 hours.

Wow! That's the most far out treatment I've ever heard of. I did find a picture of what the cancer looks like. You guys are good!

I learned I had a tumor that causes this on my appendix. about 2cc of mucin spilled, and was suctioned away, but I am so scared it's going to come back... So far the only treatment was the appendectomy, the low grade mucin tumor was incidentally found.

My treatment is to watch and wait - CT scans 6 months for 5 or more years. Not good when the plan was to have a baby this year.

How do you live your life without being terrified that every weird sensation you have is this thing coming back?

You have a choice either run your own life or let cancer run your life...

The big thing about this cancer is that it is very slow growing so you are unlikely to feel anything between 6 monthly scans it is more likely to be picked up on a scan before you ever feel anything caused by it.

Until somebody tells me I have to do something different I do not let cancer dictate decisions in my life.

If you are on facebook drop me a message with your email and I will add you to the PMP group, lots of people on their with PMP including some that have had children subsequent to being diagnosed

The thing is the oncologist said that it specifically is NOT a cancer. That it is benign (but that the mucus could cause harm)... But the stuff on the internet says it is. He said a low-grade tumor. I'm so confused.

Thank you for your response. I've started seeing a therapist.

Technically speaking it is not a cancer as it' is not the tumours that kill but rather the mucin that they produce, essentially the build up of mucin fills the abdominal cavity and compresses the organs eventually leading to death.

It's all semantics because cancer is technically defined as something that spreads via the lymphatic system INTO other organs, with PMP the cancer spreads with the mucin and ONTO the other organs.

Are you seeing a PMP specialist or just a regular oncologist?? this disease is so rear that a lot of oncologists no very little about it

I am seeing an oncologist who has done surgeries for PMP successfully before. I had a clean scan in Sept. Another one is coming in Feb. I was told I could get pregnant, and that happened, but then my baby died and so another scan is needed before we try again (which is a whole other adventure).

Bah.