For Cheryl - Our experience of different types of peritoneal cancer

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

rather than answer Cheryl's question about what type of peritoneal cancer I have under the topic of Hair loss and changes, I thought it appropriate to start a new thread on the topic, since the two are not really related.

Others on this board have different experiences of peritoneal cancer. Mine was found, not by the CT scans but by a sample of fluid taken from my abdomen which was found to cancerous. Later some got into my lung and that had to be drained as well. Since CT scans showed no tumours at all, not even tiny ones on the peritoneum, they put my diagnosis down to Peritoneal Cancer because it is only the peritoneum which can emit so much fluid into the abdominal cavity - "10kg" to start with. Not knowing if the CT scans may have overlooked something, they decided to diagnose me with Peritoneal Cancer with Primary of Unknown Origin. After I have a PET scan tomorrow week, they may find something that will given them a better idea of where there tumours may be growing

My biggest concern is the healing after any surgery as I am morbidly obese and I live alone. Being very big has always been shown to make healing more difficult after surgery, and I'm used to living alone. I don't like to be confined to a surgical bed, or to company where I can't have my own space. That's a biggie for me. Will have to wait and see.

Comments

  • westie66
    westie66 Member Posts: 642
    #2
    Type of Peritoneum Cancer
    HI AussieMaddie: Yes, let us know right away what they found out. Good luck with your PET scan!
    Cheryl
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #3
    space
    Since I have been diagnosed, I find I want my own space too. I want to do creative things like paint and draw but other domestic things seem to get in the way and people, whilst well meaning, can be too fussy. Silly I know. I've taken to writing poetry though which helps me a lot.

    Good luck with your treatement. I'll be thinking of you. xx
  • westie66
    westie66 Member Posts: 642
    #4
    wanttogetwellsoon said:

    space
    Since I have been diagnosed, I find I want my own space too. I want to do creative things like paint and draw but other domestic things seem to get in the way and people, whilst well meaning, can be too fussy. Silly I know. I've taken to writing poetry though which helps me a lot.

    Good luck with your treatement. I'll be thinking of you. xx

    Painting
    Hi: Funny thing but I too wanted to do something creative so took up painting! never done it before and I know I'm not too good at it. But it gets you out of yourself and you have something to show for it! And poetry! Not me, no talent there, but I love reading it. Go for it!
    Cheryl
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #5
    westie66 said:

    Type of Peritoneum Cancer
    HI AussieMaddie: Yes, let us know right away what they found out. Good luck with your PET scan!
    Cheryl

    Thanks Chery. I will :)
    To compound things further, I've also had a biopsiy of my lip and have just had m routine pap smear. And I have a close friend going into hospital on the 13th for protate surgery. More worried about hime than about me.

    For now
    love,
    AssieMaddie
    xxx
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #6
    westie66 said:

    Painting
    Hi: Funny thing but I too wanted to do something creative so took up painting! never done it before and I know I'm not too good at it. But it gets you out of yourself and you have something to show for it! And poetry! Not me, no talent there, but I love reading it. Go for it!
    Cheryl

    Yaaaaah!
    Go for it Cheryl! This is the best time to go for whatever you want to do.

    Love,

    AussieMaddie
    xxxx
  • Best Friend
    Best Friend Member Posts: 222
    #7
    My mom had her first catscan
    My mom had her first catscan after her first round of chemo and doc said he deeply believes my moms PPC started in her left ovary. It's soooo strange. Why don't they call it ovarian than.
  • westie66
    westie66 Member Posts: 642
    #8
    Best Friend said:

    My mom had her first catscan
    My mom had her first catscan after her first round of chemo and doc said he deeply believes my moms PPC started in her left ovary. It's soooo strange. Why don't they call it ovarian than.

    PPC confusion
    Your guess is as good as mine!!!! See my queries and confusion on other discussion threads. Primary means that is the primary - first - site of the cancer. Then in your mom's case, it should be secondary peritoneum cancer if the cancer started in the ovaries. Maybe that is the problem with these rare cancers - terminology!!!!!
    Cheryl
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #9
    Best Friend said:

    My mom had her first catscan
    My mom had her first catscan after her first round of chemo and doc said he deeply believes my moms PPC started in her left ovary. It's soooo strange. Why don't they call it ovarian than.

    Sometimes they really don't know
    Hi,

    I started at first going through the public hospital then started to see the head doctor privately. No scans (so far) show tumors *anywhere* in me, not in the ovaries, not on the peritoneum.. Nowhere. The only way they were able to diagnose cancer was by taking a sample of the fluid in my abdomen. And I think from that they were able to make the diagnosis that I definitely have peritoneal cancer, because it's the peritoneum which emits the fluid to protect all the organs inside the abdomen. But periotoneal cancer is *usually* a secondary from uterine cancer. Not always, but usually.

    My oncologist has me diagnosed as having primary of *unknown* origin with mets to the peritoneum - not because they saw any cancer anywhere else, but because peritoneal cancer is so commonly a secondary to ovarian.

    When I called him on it, he said that he honestly doesnt' know if mine is primary peritoneal or if the CT scans simply couldn't show up something that was happening in or around the ovaries. I'm guessing that he is hoping that the PET scan I had yesterdasy will show up something that will help him be more sure.

    Another doctor once told me that Primary cancer in people said to have Primary of Unknown Origin (and it can be any type of cancer) often can't be found even after an autopsy. It seens to be a category all on its own.

    Seems that ignorance is something that we can't always avoid.

    AussieMaddie
  • westie66
    westie66 Member Posts: 642
    #10
    AussieMaddie said:

    Sometimes they really don't know
    Hi,

    I started at first going through the public hospital then started to see the head doctor privately. No scans (so far) show tumors *anywhere* in me, not in the ovaries, not on the peritoneum.. Nowhere. The only way they were able to diagnose cancer was by taking a sample of the fluid in my abdomen. And I think from that they were able to make the diagnosis that I definitely have peritoneal cancer, because it's the peritoneum which emits the fluid to protect all the organs inside the abdomen. But periotoneal cancer is *usually* a secondary from uterine cancer. Not always, but usually.

    My oncologist has me diagnosed as having primary of *unknown* origin with mets to the peritoneum - not because they saw any cancer anywhere else, but because peritoneal cancer is so commonly a secondary to ovarian.

    When I called him on it, he said that he honestly doesnt' know if mine is primary peritoneal or if the CT scans simply couldn't show up something that was happening in or around the ovaries. I'm guessing that he is hoping that the PET scan I had yesterdasy will show up something that will help him be more sure.

    Another doctor once told me that Primary cancer in people said to have Primary of Unknown Origin (and it can be any type of cancer) often can't be found even after an autopsy. It seens to be a category all on its own.

    Seems that ignorance is something that we can't always avoid.

    AussieMaddie

    Ignorance
    Hi AussieMaddie: Yes, that is what I'm finding out! Because these cancers are rare, they don't know much because rare cancers don't often get the funding needed to do research and the sample base is small. I did read somewhere that PPC was more common in INdia than other places but then they have a much bigger population than most countries. I also read that PPC is becoming diagnosed more often (better screening?). You might find that the PET tells more, or not. I had 10 MRIs and CTs since September 2010 and only two of them showed the cancerous nodules on the peritoneum and omentum - things that are very small can hit or miss in these scans (or the radiologists interpreting them can hit or miss if they don't know about the nodules).
    Please let us now the results of your PET scan.
    Cheryl

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