anyone have normal ca-125 but have ovca

hairymom
hairymom Member Posts: 7
edited March 2014 in Ovarian Cancer #1
I am new here. I posted on Lung Cancer too, I have a noncalcified lung nodule too. I have a 4.6cm mass on my enlarged ovary (4.7cm) I know it coud be much larger. I have only one ovary left, it is adhered to the top of my vaginal cuff and possibly bowels. It is mostly solid, with some septations. I am 45, premenopausal, have nausea, tired, pain and heaviness in pelvic area, back pain. My ca-125 is normal. My GYN/ONC feels it needs to come out (doesn't think it will resolve on its own) but isn't overly concerned for cancer, she said she has been wrong before and the only way to know for sure it to take it out and biopsy it (I love her, she is so honest)I was wondering if anyone out there has had normal ca-125 and then find out it is cancer. I just want to be my own health advocate and would appreciate any advice since so many of you have been down this road. Any feedback would be SO appreciated.
Thank You so much and
God Bless You All
hairymom

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
    Hello Hairymom
    I sympathise with you - you do seem to be having it tough with your health at the moment. Eventhough your ca-125 is normal it doesn't take away your worry. However it is good news that your problems aren't cancerous. I have peritoneal cancer - which is the lining of the pelvis & abdomen and it has spread to the lining of my lungs. I don't have tumours anywhere else so surgery is not an option but if it was I wouldn't hesitate.

    If you have been given the option of removing organs that are causing you pain and discomfort then it seems that is a good idea. Also the mass may be benign at the moment but who knows what may happen to it in the future.

    I understand how you want to be in charge of your own health & sometimes you have already made your decision you just need someone to reassure you that it is Ok to go ahead. I am 49 and went through the menopause when i was 45 - so ovaries etc are no use anymore anyway.

    Take care and I really hope things go well for you. Let me know how it all goes. Tina xxxx

    PS I am from the UK so some of the procedures may be a little different.
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #3
    Tina Brown said:

    Hello Hairymom
    I sympathise with you - you do seem to be having it tough with your health at the moment. Eventhough your ca-125 is normal it doesn't take away your worry. However it is good news that your problems aren't cancerous. I have peritoneal cancer - which is the lining of the pelvis & abdomen and it has spread to the lining of my lungs. I don't have tumours anywhere else so surgery is not an option but if it was I wouldn't hesitate.

    If you have been given the option of removing organs that are causing you pain and discomfort then it seems that is a good idea. Also the mass may be benign at the moment but who knows what may happen to it in the future.

    I understand how you want to be in charge of your own health & sometimes you have already made your decision you just need someone to reassure you that it is Ok to go ahead. I am 49 and went through the menopause when i was 45 - so ovaries etc are no use anymore anyway.

    Take care and I really hope things go well for you. Let me know how it all goes. Tina xxxx

    PS I am from the UK so some of the procedures may be a little different.

    Ca-125
    CA125 is a protein that shows up in the blood and is considered merely a 'cancer antigen marker'. In other words, you could have a high level and have no cancer, or have a low level and have cancer, and every scenario in between. As you've probably read, there are women who have had numbers into the hundreds and have been NED (no evidence of disease). And while many of us aspire to reach the lowest number possible, some women have had levels of 5 or 6 and have had cancer. The bottom line is that each individual situation is different.
    Hope this helps you. Sending you positive thoughts your way.
    Hugs and Prayers, Terry
  • saundra
    saundra Member Posts: 1,370 Member
    #4
    Biopsy
    I had a needle biopsy guided by CT scan to diagnos that my ovarian tumors were indeed carcinoma.
    This is an easy way to be sure without surgery. They take a needle core sample and send it to the lab. That way if it is cancer, you can have a gyn/onc/surgeon and really increase you survival rate over surgey done just by an gyn. Saundra
  • pullingforlou
    pullingforlou Member Posts: 7
    #5
    saundra said:

    Biopsy
    I had a needle biopsy guided by CT scan to diagnos that my ovarian tumors were indeed carcinoma.
    This is an easy way to be sure without surgery. They take a needle core sample and send it to the lab. That way if it is cancer, you can have a gyn/onc/surgeon and really increase you survival rate over surgey done just by an gyn. Saundra

    Same thing
    My mother had a normal blood count but found the tumors only after going to ER for pain. Doc said they could have been there for a year for all we know. It is a bit upsetting. Not sure why docs dont suggest more routine CT scans.
  • hairymom
    hairymom Member Posts: 7
    #6
    pullingforlou said:

    Same thing
    My mother had a normal blood count but found the tumors only after going to ER for pain. Doc said they could have been there for a year for all we know. It is a bit upsetting. Not sure why docs dont suggest more routine CT scans.

    thank you all for the input.
    thank you all for the input. I am getting a little nervous. I realize the possibility of this mass being cancerous, but I have only one ovary and have been hearing so many bad things about surgical menopause and heart disease. (I am 40lbs overweight, on BP med. and my sugars and cholestrols are starting to raise) thank you for the input on the biopsy. I am going to ask my doctor about more blood tests to check hormones and a possible biopsy. If anyone has any input about the hormones I appreciate it. I know that the doctor wouldn't take it out if she thought it looked normal, but I guess this is part of the not knowing for sure and trying to make the best informed choice I can. thank you and God Bless
  • pullingforlou
    pullingforlou Member Posts: 7
    #7
    hairymom said:

    thank you all for the input.
    thank you all for the input. I am getting a little nervous. I realize the possibility of this mass being cancerous, but I have only one ovary and have been hearing so many bad things about surgical menopause and heart disease. (I am 40lbs overweight, on BP med. and my sugars and cholestrols are starting to raise) thank you for the input on the biopsy. I am going to ask my doctor about more blood tests to check hormones and a possible biopsy. If anyone has any input about the hormones I appreciate it. I know that the doctor wouldn't take it out if she thought it looked normal, but I guess this is part of the not knowing for sure and trying to make the best informed choice I can. thank you and God Bless

    No worries
    When my mother was first diagnosed in 97' she had both ovaries removed so everythng will be ok.
  • Davita
    Davita Member Posts: 4
    #8
    I had a grade 2 tumor and
    I had a grade 2 tumor and was in stage 3c 11 years, 10 months ago and had a CA125 of 35. So yes it is possible
  • ctaylorphoto
    ctaylorphoto Member Posts: 1
    #9
    I had a normal CA-125 of 35
    I had a normal CA-125 of 35 and I had ovarian and uterine cancer. The cancer was confirmed for me through a trans-vaginal ultrasound and I had a radical hysterectomy to remove everything by a gyn/onc. I was incredibly lucky to be stage 1b and required no further treatment. best of luck to you.
  • Nancy48
    Nancy48 Member Posts: 5
    #10
    Normal ca125
    I had a ca125 of 14 and had stage II ovarian cancer.

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