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ktamp
ktamp Member Posts: 81
in Ovarian Cancer #1
Back story...at the time of my surgery, I did not have nodes taken. They sent the suspicious ovary to pathology while I was in surgery and the initial diagnosis was benign. Three days later the final pathology report revealed cancer. My CA 125 3 weeks before surgery was 210. I get a Ca 125 every 3 weeks with my chemo. It didn't occur to me to ask about it until the last 2. They were 8 and 9. I was discussing my past results with my chemo nurse and the highest recorded one she had was 12. That was the one done 3 weeks after surgery., before my first chemo. I was and am still a bit nervous about not getting the nodes. From what was taken, it was only in the right ovary. But a drop from 210 to 12 just from surgery has to be a good sign, right? That was before any chemo. What do you all think?

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  • carolenk
    carolenk Member Posts: 907 Member
    #2
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    There is no way to predict
    There is no way to predict the situation based on the evidence you present. A PET/CT scan might answer your question. The CA-125 is not a very good test but it's all we have this time.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #3
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    IP Chemo?
    Are you receiving IP chemo? I know a number of women receving that, and their CA-125 seems to remain a bit elevated during the treatment.
  • ktamp
    ktamp Member Posts: 81
    #4
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    Tethys41 said:

    IP Chemo?
    Are you receiving IP chemo? I know a number of women receving that, and their CA-125 seems to remain a bit elevated during the treatment.

    I had a ct before my surgery
    I had a ct before my surgery which only showed a couple of lesions in the liver and my medical oncologist stated something looked off with my bladder. The lesions have been there for more than 2 years. My colorectal surgeon biopsied a couple of them at the time of surgery for colon cancer and they were found to be benign. They have showed up on every ct since but have not changed. The bladder thing turned out to be endometriosis that had adhered my bladder to my uterus. I will get a ct after I finish chemo and a second look surgery as well.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #5
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    It is a good sign
    yes that is very good and the chemo will take care of any remaining cancer cells. What is your diagnosis? Mine is lllc so it was pretty advanced.I would guess you are at a lower stage which is good but you have to be vigilant, this is a very sneaky cancer it can lie dormant for a long time.
    Any changes in your body go to your dr and don't just let him/her say it is nothing make them prove to you that it isn't a reoccurance.
    Colleen
  • ktamp
    ktamp Member Posts: 81
    #6
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    They are calling me 1C but
    They are calling me 1C but that isn't a 100% diagnosis without the nodes. It wasn't in the uterus, left ovary, or fallopian tubes. Peritoneal washings were negative. The cyst on the left ovary burst open when he took it out. At the time the pathologist said the cyst was an endometrioma. Which it was but cancer was found deep inside the cyst. I have always been nervous about not getting those nodes. I want to know what my diagnosis is for sure. Even if it is worse like a stage 3, I want to know. The what ifs about those nodes is driving me crazy.
  • CindyGSD
    CindyGSD Member Posts: 190
    #7
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    ktamp said:

    They are calling me 1C but
    They are calling me 1C but that isn't a 100% diagnosis without the nodes. It wasn't in the uterus, left ovary, or fallopian tubes. Peritoneal washings were negative. The cyst on the left ovary burst open when he took it out. At the time the pathologist said the cyst was an endometrioma. Which it was but cancer was found deep inside the cyst. I have always been nervous about not getting those nodes. I want to know what my diagnosis is for sure. Even if it is worse like a stage 3, I want to know. The what ifs about those nodes is driving me crazy.

    Nodes...
    I was initially diagnosed with a Uterine sarcoma so no nodes were taken. After the pathology report came back it turned out to be a rare Uterine cancer. My onc-surgeon debated whether she should go back in and take out nodes but since nothing showed up suspicious on the scans and the treatment would be the same either way, she decided not to remove any.

    I wouldn't worry to much about it unless you had some nodes light up on your scan or your treatment would be radically differently. I'm stage 2, but could be 3 if there was lymph node involvement.

    Have you asked your doctor whether it is worthy doing a second surgery to take some nodes? I've heard that some doctor's aren't taking nodes unless they absolutely have to because of all the side effects lymph node removal can cause.

    Take care,
    Cindy
  • ktamp
    ktamp Member Posts: 81
    #8
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    CindyGSD said:

    Nodes...
    I was initially diagnosed with a Uterine sarcoma so no nodes were taken. After the pathology report came back it turned out to be a rare Uterine cancer. My onc-surgeon debated whether she should go back in and take out nodes but since nothing showed up suspicious on the scans and the treatment would be the same either way, she decided not to remove any.

    I wouldn't worry to much about it unless you had some nodes light up on your scan or your treatment would be radically differently. I'm stage 2, but could be 3 if there was lymph node involvement.

    Have you asked your doctor whether it is worthy doing a second surgery to take some nodes? I've heard that some doctor's aren't taking nodes unless they absolutely have to because of all the side effects lymph node removal can cause.

    Take care,
    Cindy

    I am getting a second
    I am getting a second surgery because I need a hernia repair anyway. My gyn/onc will do the hernia repair and take another look. I do not know if he will be taking any nodes. I will ask him about that next time I see him. He has never been that concerned about the nodes, he says treatment would be the same anyway. This is my second primary cancer and I just want assurance it is gone.
  • Honordon
    Honordon Member Posts: 49 Member
    #9
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    ktamp said:

    I am getting a second
    I am getting a second surgery because I need a hernia repair anyway. My gyn/onc will do the hernia repair and take another look. I do not know if he will be taking any nodes. I will ask him about that next time I see him. He has never been that concerned about the nodes, he says treatment would be the same anyway. This is my second primary cancer and I just want assurance it is gone.

    Nodes
    am same about nodes my nodes showed cancer before I had radiotherapy and now am told they are ok , not that its gone just that they are ok ... which worries me . I had a ovary removed with large cancer after discovery of cervical cancer , ovarian cancer though they are saying was main cause and its ovarian cancer which probably spread to cervix and evolved into a different type of cancer anyways am being treated for two types of cancer now . am on round 2 of carbo/taxol which seems to be working .....good luck on your journey I am staged at 4B but its only in lower pelvis and not in upper abdomen so am not sure on this staging I guess it went for me on size of tumors which were pretty large apparently .....had tumors in one kidney stem lymph nodes in pelvis cervix womb and an ovary.
    Also I had ovaries and tubes removed but cervix and Uterus was fused to bowel so they left it in ////////best of luck with everything Donna :)

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