So confused about mom's cancer

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JMulkey
JMulkey Member Posts: 32
edited March 2014 in Ovarian Cancer #1
Ladies, I really need some help here. Ok, we've been told that mom's CT scans showed nothing in the way of any tumors in her abdomen. Her liver was unremarkable. But she has some thickening in her uterus. She also had severe ascites, that had to be drained four times before her first chemo. And it showed adenocarcinoma, which we were told usually means ovarian cancer. So they put her on carbo/taxol, of which she has done two treatments. Her CA-125 was 770 when she started, and after her first treatement, fell to 279. We don't know yet how much it has fallen after her second treatment. The first treament was absolutely a nightmare. We were in the ER four times, the Onc's office four times, and actually admitted to the hospital once for blood transfusions. This second chemo, it's like she didn't get anything at all. No nausea, some very mild bone pain.

The onc isn't one that is easy to talk to. I had breast cancer and LOVED my onc. I could go in with a whole list of questions and he would sit and answer each one. This onc doesnt' answer much of anything, and when he does, it's in smart little sentences. So not a good one to discuss anything.

I don't know what to think. We have no tumors, absolutely no stage. The surgeon said he would look at doing surgery after two treatmeetns, she's had two treatments and we have heard nothing from the onc about surgery.

Any suggestions, or does anybody know anyoen who has had something similar in their fight against ovarian, where nothing shows up on the CT scans?

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  • kellyh33
    kellyh33 Member Posts: 287
    #2
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    Strange
    First let me say if you and your Mom are that uncomfortable with the oncologist then find a different one.
    Can you call and ask his assistant or someone in the office what the next step is? Mom's doctor doesn't like to stage OC because she said the course of treatment is the same regardless of what stage it is in.
    I have never heard of someone being treated for o/c when their CT scan is clear. Very odd.
    I wish i had some answers for you.
    Good luck to you and your mom.
    Kelly
  • JMulkey
    JMulkey Member Posts: 32
    #3
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    kellyh33 said:

    Strange
    First let me say if you and your Mom are that uncomfortable with the oncologist then find a different one.
    Can you call and ask his assistant or someone in the office what the next step is? Mom's doctor doesn't like to stage OC because she said the course of treatment is the same regardless of what stage it is in.
    I have never heard of someone being treated for o/c when their CT scan is clear. Very odd.
    I wish i had some answers for you.
    Good luck to you and your mom.
    Kelly

    Even though the CT didn't
    Even though the CT didn't show a mass, the ascites showed cancer cells, and the onc said they were of the type for ovarian cancer, although he said it could be colon cancer, but with the CA 125, he's betting ovarian. So that's why they started treatment. It is very confusing for me. With breast cancer, it's right there, easy to see, easy to figure out what type, after surgery, stage it, etc. This is totally different.
  • Tasgirl
    Tasgirl Member Posts: 85
    #4
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    JMulkey said:

    Even though the CT didn't
    Even though the CT didn't show a mass, the ascites showed cancer cells, and the onc said they were of the type for ovarian cancer, although he said it could be colon cancer, but with the CA 125, he's betting ovarian. So that's why they started treatment. It is very confusing for me. With breast cancer, it's right there, easy to see, easy to figure out what type, after surgery, stage it, etc. This is totally different.

    Sorry to hear about your
    Sorry to hear about your mum. When I was diagnosed it was through a scan also which only showed ascites. I had a sample taken to be tested which confirmed it was cancerous, it took a couple of days to confirm if it was ovarian or colon cancer - it was neither - it was Primary Peritoneal and I did not have any tumours. I had debulking surgery where they took my omentum which was covered in a caking substance - but no tumors. One of my overies, appendix and fallopian tubes were also covered with this substance. My CA115 was just under 4000 to start and after chemo it went down to 12 but has now gone up as I have enlarged lymph nodes.
    Has your mum been confirmed with Ovarian?
    Regards Jenny
  • JMulkey
    JMulkey Member Posts: 32
    #5
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    Tasgirl said:

    Sorry to hear about your
    Sorry to hear about your mum. When I was diagnosed it was through a scan also which only showed ascites. I had a sample taken to be tested which confirmed it was cancerous, it took a couple of days to confirm if it was ovarian or colon cancer - it was neither - it was Primary Peritoneal and I did not have any tumours. I had debulking surgery where they took my omentum which was covered in a caking substance - but no tumors. One of my overies, appendix and fallopian tubes were also covered with this substance. My CA115 was just under 4000 to start and after chemo it went down to 12 but has now gone up as I have enlarged lymph nodes.
    Has your mum been confirmed with Ovarian?
    Regards Jenny

    Hi, thanks for your answer,
    Hi, thanks for your answer, Jenny :) No. she hasn't been confirmed...I thought she had to have surgery to be confirmed? If not, how do they do that, do you know? I'm not even sure, really at this point what kind of questions I should be asking the oncologist and I'm kind of worried that if I continue to ask questions, he's going to get really impatient with me.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
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    JMulkey said:

    Hi, thanks for your answer,
    Hi, thanks for your answer, Jenny :) No. she hasn't been confirmed...I thought she had to have surgery to be confirmed? If not, how do they do that, do you know? I'm not even sure, really at this point what kind of questions I should be asking the oncologist and I'm kind of worried that if I continue to ask questions, he's going to get really impatient with me.

    I am so sorry
    that you and your mom are going through all this. A cancer diagnosis is very overwhelming, but especially without information. Make sure your mom has a gyn/onc, and make an appointment to see him, and ask him what the game plan is. My surgeon doesn't have a warm and fuzzy personality either, but when I make my list and go in, he always answers my questions. Don't be intimidated by him, you are paying him big money to work for you.

    Hang in there, and come back anytime to ask anything. Most people are eating turkey right now, but there are many ladies who can help to support and answer your questions.

    Hugs and prayers,
    kathleen

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