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

AussieMaddie
AussieMaddie Member Posts: 345 Member
in Peritoneal Cancer #1
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

Comments

  • westie66
    westie66 Member Posts: 642
    #2
    Number of Members
    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
    wanttogetwellsoon Member Posts: 147
    #3
    having this board
    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
    westie66 Member Posts: 642
    #4
    wanttogetwellsoon said:

    having this board
    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.

    Numbers
    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
    AussieMaddie Member Posts: 345 Member
    #5
    westie66 said:

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

    It would be good if CSN kept
    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
    westie66 Member Posts: 642
    #6
    AussieMaddie said:

    It would be good if CSN kept
    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

    The Numbers
    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
    TexanByChoice Member Posts: 44
    #7
    PPC Members
    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)

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