PLEASE BE PROACTIVE

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TexanByChoice
TexanByChoice Member Posts: 44
in Ovarian Cancer #1
Ladies, as you can see from my prior post I'm not in a good condition now...but I have soomething I feel is important and maybe applies to you. I was dx, operated, etc. in 2009. Stayed NED 13 months, had a reoccurrence, another course of carbo/tax back into remission until Dec/Jan. It's back. But then my onc has never checked other locations in my body...only pelvic CTs ( which were always negative). She never got alarmed unless my CA Markers started the climb. I went from 6.4 to now 37.5 (just out of remission)....but if she would have done a head to toe scan just ONCE, she would have discovered the cancer was spreading to my brain...now 3 tumors. She told me OV doesn't spread to the brain or anywhere else...it always reappeared in the abdomen. To shorten this up. Make sure that you are checked more than relying just on CA 125...it doesn't show other cancers which maybe there. At CT of the pelvic area won't show it starting in lungs and brains...etc.

Love and Good Luck
Shirley

PS sorry for this jumbo of words, AI'm having difficulty in getting my thoughts out and seeing to type...but I care about you and if this helps anyone then I accomplished my intent.

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  • karen1951
    karen1951 Member Posts: 103
    #2
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    shirley...i agree with
    shirley...i agree with you....please let your doctor know of any concerns you have....i started to see floaters in my right eye and i immediately told my oncologist....he sent me right away for a brain mri....made me feel he was on top of things....our prayers are with you....karen
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #3
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    Hi Shirley
    your message is coming thru loud and clear. I totally agree, be proactive and CA is not a good indicator For a lot of women. Two words an oncologist should never use are always and never. It's a known fact that ovarian cancer can spread to brain. It may not be that common, but it happens. My mother had uterine cancer, but her gyn-onc. told me about a patient with ovarian that had been doing very well, had a recurrence, had brain mets. Many women with brain mets, are successfully treated and do very well. Leesag is one that comes to mind.
    Big hugs and prayers,
    Cindy
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #4
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    You are amazing
    You are amazing to be thinking of others at this time! What treatment is planned for you? I think as more women are surviving their initial diagnosis there are going to be more metasatis to other areas. I am so sorry you are dealing with this.
    Colleen
  • clamryn
    clamryn Member Posts: 508
    #5
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    Agree
    I agree with you. I got the CT/scans in the beginning but now I get the full body pet/scan done. I really rely on that more than the CA125.

    Linda
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #6
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    LeesaG
    This warning is very reminiscent of one posted by LeesaG awhile ago. Sorry to hear about the tumors. Hope things go well in addressing them.
  • leesag
    leesag Member Posts: 621 Member
    #7
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    Hi Shirley,I also had a
    Hi Shirley,

    I also had a mets to the brain. Diagnosed last May 31. I had 3 tumors, one was the size of a large egg. The other two were near my brain stem, so surgery wasn't an option for them. however, surgery removed the large one from my brain, radiation reduced the other two to less than a few cms. Finally, Gamma Knife eliminated the rest.

    I was diagnosed with brain mets only after my CA125 continued to rise and my husband insisted on a CT scan of my brain. As it turns out,many of my friends had noticed that I had speech deficits but were afraid to either admit it or tell me (or my husband). My husband is a nurse so he finally spoke to my doctor about his observations.

    I'm happy to say that after surgery on May 31st, followed by whole brain radiation in July, and then Gamma knife in August, I'm cancer free once more. This time I'm planning to stay cancer free for a very very long time!

    hugs,

    Leesa G

    (PS: feel free to msg me on facebook, Leesa Green pic of a black cat)

    PPS: I'm a teacher and I have been back to work from the first day of school. Only side effects: baldness, dry skin and fatigue!
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #8
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    leesag said:

    Hi Shirley,I also had a
    Hi Shirley,

    I also had a mets to the brain. Diagnosed last May 31. I had 3 tumors, one was the size of a large egg. The other two were near my brain stem, so surgery wasn't an option for them. however, surgery removed the large one from my brain, radiation reduced the other two to less than a few cms. Finally, Gamma Knife eliminated the rest.

    I was diagnosed with brain mets only after my CA125 continued to rise and my husband insisted on a CT scan of my brain. As it turns out,many of my friends had noticed that I had speech deficits but were afraid to either admit it or tell me (or my husband). My husband is a nurse so he finally spoke to my doctor about his observations.

    I'm happy to say that after surgery on May 31st, followed by whole brain radiation in July, and then Gamma knife in August, I'm cancer free once more. This time I'm planning to stay cancer free for a very very long time!

    hugs,

    Leesa G

    (PS: feel free to msg me on facebook, Leesa Green pic of a black cat)

    PPS: I'm a teacher and I have been back to work from the first day of school. Only side effects: baldness, dry skin and fatigue!

    Thank you, Shirley
    Your advice is spot on and by contributing to this board, you've helped more women than you'll ever know. Sending you hugs and good wishes.

    Gratefully yours,
    Kelly

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