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My Mum has Primary Peritoneal Cancer and I'm lost

lgham
Posts: 1
Joined: Apr 2011

On April 13th, I was called around to my parents house to sit down with my Mum and Dad over something they needed to speak to me face to face. Two things in life scare me and also mean there's something wrong: 1. phone calls in the middle of the night (my family is from england so the time difference means emeregencies happen in the middle of the night) and phone calls from my father saying, "you need to come around the house." The doctors suspected the thickening of her peritonium could either be an infection or perhaps.. cancer. It was cancer. Primary Peritoneal Cancer. She went in for her "debulking surgery" on Monday and it's now Friday. Unfortunately, as most hospitals, the doctors get a bit backed up and they can't come give us the pathology as fast as I would like!!! I have NO idea if any one can help point me in the right direction or at least tell me their story. I am hopeful, as always, though. Latest I know is today (day four) she's deveolped an absess in her abdomin that they are currently draining. During her "debulking surgery" they removed her omentum and sections of her colon where the cancer had attached itself. That being said, she had uncontrolable diaherra to the point where she's wearing Depends. Has ANYONE been here? can ANYONE give me some idea ( good OR bad ) as to what the bloody hell is the next step here or what can come of this horrid disease? Bless you all who have told PPC, "BUGGER OFF!!" I'm rallying right there with you!! I'm sorry if this seems a bit scattered brained but honestly? I AM!! Good health to you all xxxxxxxxxxxxxxx

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I was diagnosed with PPC last November (2009) I didn't have any surgery because the cancer was very tiny and spread all over the peritoneum and couldn't possibly be ALL removed. However I would like to reassure you that after 16 months on I am very well and feeling realitively healthy at the moment.

I was diagnosed when it was discovered I had fluid aroung both of my lungs. The cancer cells 'weep' fluid and some ladies get this in their abdomen. I didn't, mine went in the space around the lungs (in the pluera) I had the fluid drained and this is how they found my cancer (it took them a couple of weeks with tests and scans before they could see where the cancer cells were coming from)

It was treated with chemotherapy (Carboplatin and taxol) which is the most effective way to treat PPC as it goes all over the body and zaps any cells it finds.

DON'T read all the stuff on the Internet about PPC as it is mostly doom and gloom. I did and it terrified me. It is rare so there is not alot of research or information about it. Unfortunately it is a cancer that they can't cure ............ BUT I view it as a chronic cancer that can be controlled by chemo and some ladies can live years with it.

I have now had 2 rounds of chemo. I am now having a break and my oncologist will be monitoring me to see how well I am and if I become un-well in the future I will have some more chemo.

If you go onto the Ovarian boards you will read posts by other ladies who have similar stories as your mum - some with bowel problems after surgery.

Hope this has helped. Keep posting to let us know how your mum is. Tina xx

birdwellv
Posts: 13
Joined: Apr 2011

Igham, I was diagnosed in Oct. 2009 with PPC and had surgery, removed 5 tumors,ovaries, 3 lymph nodes, 12 inches of intestine and part of the lining of the stomach. Underwent 6 rounds of carboplatin/taxol and was cancer free for 6 months. Went for an exam in Jan 2011 and they told me the cancer was back. Started doxil chemo in January and don't know how many rounds this time. Just taking one day at a time.

Vicki

Best Friend
Posts: 222
Joined: May 2011

You need to check out ovarian board. That's where the women are who suffer from this cancer.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Of course, you were right, bf, mentioning the ovarian cancer board. That was where most of us were discussing our peritoneum cancer. Just wanted to bring this thread up to date with the news that we now have our very own Peritoneum Board so we can share our stuff there.

(I'm eager to see us all together because it's in a trial period to see if enough people post to it - else they will remove it)

Take good care,

AussieMaddie

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