CSN Login
Members Online: 4

Anyone know how many members are in our Peritoneum Cancer board?

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

Just wondering how our numbers pan out compared to other boards.
I know that Peritoneum Cancer is said to be rare, but I wonder just how rare.
Anyone done any reading on the subject?
Thanks,
AussieMaddie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

110 according to the figure where peritoneum cancer appears on the list of discussion boards. About right given the rarity of this cancer. The gallbladder folks don't even have a separate board, we're lumped in with the Rare and Other Cancers.
Chryl

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

It's really lovely to have somewhere I can share my joys and worries with and here is the place I can do that. It's been reassuring for me to understand that I'm not the only person in the world dealing with this type of disease. I really wouldn't want anyone else to have it, but given that they have, it's good to connect with some of the people who do. Like most people who are diagnosed with PPC, I'm having treatments which help to stem the flow of the disease and to make me more comfortable. What I have really learnt from the people here, is that lots of people live a lot longer than I once thought was possible for me. I very much hope I'm in that category too. My fingers and toes are crossed of course.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

I think I over-estimated the number as that is the number of discussion topics. LIkely it is far lower than that. Sorry!
Cheryl

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

It would be good if CSN kept a database of how many people identified as having which particular cancer, because (for example) so many of us who have peritoneum cancer either have PPS or else it started elsewhere. Because PPC is so rare from all accounts, I'd like to see a graph charting what percentage have the different cancers, primary and secondary.

But that might betray confidences of members.

AussieMaddie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: All forms of peritoneal cancer are rare so we'll never have a lot of members. Greta told me she'd be checking participation to see whether it will be worthwhile having a separate discussion board for peritoneum cancer. So keep those discussion threads coming. I suspect that secondary peritoneal cancer is rare but more common than PPC. To me the interesting thing is how similar PPC is to ovarian cancer.
Cheryl

TexanByChoice
Posts: 44
Joined: Oct 2011

I feel that there are many more PPC folks in the U.S. then one would think. Unfortunately there is not a distinction made for people having PPC and they tend to get lumped in with ovarian. Perhaps this is because their treatments follow the ovarian cancer care. On most of the chats, there isn't a separate group for PPC folks. I'm so thankful I stumbled upon this forum.

My oncologist informed me that many times it is difficult in Stage III to distinguish whether the ovarian cancer spread to the peritoneal or vice versus. Initially, I was misdiagnosed as ovarian, but further examination of everything revealed I actually had PPC and it had spread to the outside only of my ovaries and a small portion of my colon (again externally).

I wish the medical field would look at us independently and research the whys and wherefors so to speak. Don't misunderstand -- if treatment for ovarian keeps PPC at bay I've been thankful for those chemo treatments.

Best of Luck to all of you!
TexanByChoice
(my best friend is Miss I. V. Pole, ha)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network