Microscopic disease

wanttogetwellsoon
wanttogetwellsoon Member Posts: 147
in Peritoneal Cancer #1
I went to see my consultant today to see about my serous papillary primary peritoneal for the three month scan results. She said that I had microscopic cells which were spread throughout the abdomen. I already knew that from the laparoscopy I had in May. Unfortunately, nothing can be seen on the CT scan so the medical team have no idea whether the carboplatin is working. My CA125 reading is normal (as it has been throughout) even though my cancer is advanced. In the end, she said that the only way to monitor me is to see how I feel. They have to work blind. I've been referred to the surgeons again to see if they want to have a look but she feels that they'll say the procedure is too risky. I also have some lesions on the liver and from a CT taken a few years ago, it seems that they have always remained the same in size. I was told that they are probably birth marks which a lot of people have. However, they seem to have reduced during this three month course of treatment, so if they are responding to the carboplatin, could they possibly be malignant too but not microscopic? Is it possible for the microscopic cells to transform into something else? It's probably not possible to answer, but it's just possible someone might know as there's a lot of experience here. :)

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
    Seeing how you feel
    This is what my oncologist has said to me. I'm kind of the opposite way round to you. I have stage 4 PPC (mets to the lining of my lungs) but back in October last year my CA125 was 1,288 where my scan was clear. My oncologist was puzzled and put me back on chemo just to be safe. My abdomen was clear of fluid and all of my organs were healthy. I did develop fluid around my lungs though. After treatment, the fluid gone and my scan all clear but my CA125 is 116. So my oncologist will not put me on chemo again unless Iam feeling ill.

    Sorry to hear about your liver but if they are not growing or spreading that has to be positive.

    Sorry but I don't know the answer to your questions.

    Tina x
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #3
    Tina Brown said:

    Seeing how you feel
    This is what my oncologist has said to me. I'm kind of the opposite way round to you. I have stage 4 PPC (mets to the lining of my lungs) but back in October last year my CA125 was 1,288 where my scan was clear. My oncologist was puzzled and put me back on chemo just to be safe. My abdomen was clear of fluid and all of my organs were healthy. I did develop fluid around my lungs though. After treatment, the fluid gone and my scan all clear but my CA125 is 116. So my oncologist will not put me on chemo again unless Iam feeling ill.

    Sorry to hear about your liver but if they are not growing or spreading that has to be positive.

    Sorry but I don't know the answer to your questions.

    Tina x

    Feel in a similar boat even though it's different
    Tina...
    You're right that yours is back to front to mine, but I feel that it's frustrating that nothing shows up. I have heard on here that a PET scan is better than a CT when it comes to microscopic cells which sound good but actually do a lot of harm. I'm going to ask about that on my next hospital visit.

    It looks like your oncologist ws right to put you on a new chemo regime, doesn't it? Your lung sem to have settled down which is good because I know the ascites gets you down as it does with me and I can really understand that.

    I'm worried about the liver lesions. The doctors had said they were benign but no biopsies had been taken as birth marks can bleed. However, it does seem as if they might be something else as they've reduced since I began chemotherapy. I think this is one of the reasons I've been re-referred to the surgical team and, if they operate, the surgeons can see from biopsies what effect the carboplatin is having at the moment. However, my oncologist thinks it's likely the answer will be that it's too risky to operate due to the poor state of my abdomen. I'm not sure at all.

    Anyway, being managed blind is hard. I have my faith in my doctors as it's the only way to go, but I like to know how it's all working which gives me a degree of input into my own treatment and how I manage it.

    Take good care Tina. :)
  • carolenk
    carolenk Member Posts: 907 Member
    #4
    wanttogetwellsoon said:

    Feel in a similar boat even though it's different
    Tina...
    You're right that yours is back to front to mine, but I feel that it's frustrating that nothing shows up. I have heard on here that a PET scan is better than a CT when it comes to microscopic cells which sound good but actually do a lot of harm. I'm going to ask about that on my next hospital visit.

    It looks like your oncologist ws right to put you on a new chemo regime, doesn't it? Your lung sem to have settled down which is good because I know the ascites gets you down as it does with me and I can really understand that.

    I'm worried about the liver lesions. The doctors had said they were benign but no biopsies had been taken as birth marks can bleed. However, it does seem as if they might be something else as they've reduced since I began chemotherapy. I think this is one of the reasons I've been re-referred to the surgical team and, if they operate, the surgeons can see from biopsies what effect the carboplatin is having at the moment. However, my oncologist thinks it's likely the answer will be that it's too risky to operate due to the poor state of my abdomen. I'm not sure at all.

    Anyway, being managed blind is hard. I have my faith in my doctors as it's the only way to go, but I like to know how it's all working which gives me a degree of input into my own treatment and how I manage it.

    Take good care Tina. :)

    You need the PET/CT
    The PET/CT is the most accurate test that you can have...it can measure active disease by using radioactive sugar which is taken up by any malignant cells too small to be seen on other scans. So you would know if the chemo was working or not with the PET/CT results.

    The PET/CT will tell you if the cancer is in your bones or not, too. Some women get this test done every six months, others, not at all. It must be because it is expensive.

    Carolen
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #5
    carolenk said:

    You need the PET/CT
    The PET/CT is the most accurate test that you can have...it can measure active disease by using radioactive sugar which is taken up by any malignant cells too small to be seen on other scans. So you would know if the chemo was working or not with the PET/CT results.

    The PET/CT will tell you if the cancer is in your bones or not, too. Some women get this test done every six months, others, not at all. It must be because it is expensive.

    Carolen

    the pet scan
    Carolen...
    Thanks for explaining the PET/CT routine. It seems a silly thing for my doctors to keep doing the CT even though the results don't show through. I presume they're looking to see if bigger tumours turn up or if fluid is there. I'm not sure. I'm going to ask next time I see my oncologist if a PET/CT is possible. I've been referred to the surgeons to see if they want to have a look but my doctor thinks they'll say it's too risky. So, maybe the PET/CT if a compromise. Thanks again. :)

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