Rise in Ca-125

duckcreek
duckcreek Member Posts: 14
edited March 2014 in Ovarian Cancer #1
I just got the dreaded phone call that my number went from 8 to 121. They have ordered a ct scan for tomorrow. I am really scared that it has risen its ugly head again. My insurance will not pay for a petscan. I thought I start out with the ct scan and go from there. If nothing shows up and the ct then I'll demand a Petscan. I was wondering what type of scan do most of you girls get? Does your insurance pay for a pet? Please everyone say alittl prayer for me tonight

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • curlyq1971
    curlyq1971 Member Posts: 56
    #3
    I am so sorry to hear about the rise in your CA125, I hope that it is another explanation other than a reoccurence. I just wanted you to know that I am thinking of you and will say a prayer for you tonight.

    I am new to this board and was going back to see older posts, and I came across a old one of yours where you were looking for a doctor in the midwest and you had found Dr. Hodel in Peoria, IL, I don't know if that is who your doctor is but, I wanted you to know that Dr. Hodel was my gyne/oncologist surgeon, he performed my hysterectomy a little over 2 years ago and I truly trust him with my life. He is one of the best doctors in the United States and has been doing this for over 25 years. He writes his own books and statistics. I am hoping that he is the one that you chose to go to.

    Please keep us posted on your CA125 and the outcome. I am sending alot of hugs your way tonight.

    Take Care,
    Leslie
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
    I am sorry to read that your ca125 has jumped up. I mostly get ctscans, but have had a couple pet/ctscans over the past 5 years. My Dr says he trusts the ctscans and that is all he really recommends. Remember if the cancer growth is small enough that it doesn't show on a ctscan it is a good thing and that just means all the easier for the chemo to get rid of it.

    Prayers N Hugs Bonnie
  • mopar
    mopar Member Posts: 1,972 Member
    #5
    We live by those numbers, don't we? Mine had taken a huge spike, and I sincerely suspect it was due to the Boniva I had taken. I'll be getting a recheck on that next week, so I'll hope for the best. In the meantime, how are you feeling? Hold the good thoughts and you can be sure you'll be in my thoughts and prayers. I mostly get CT scans (although one time it didn't show a mass). My doctor only had me take a PET scan once - fortunately, my insurance paid for it. But regardless, I would be willing to pay for one, just for the peace of mind.

    (((HUGS)))
    Monika
  • lindachris
    lindachris Member Posts: 173
    #6
    Our insurance did not want to pay for a PET scan either. But when I offered to pay for the doctors did say they could do one and know know that much more. We wound up doing exploratory surgery, finding out for sure what we were dealing with and having treatment, with immediate effect. My wife's counts were up to 500 and now she's down to 3 in CA-125. None of these indicators and tests are absolutes. Her CA-125 was up but tests of the fluid in her abdomen did not show any cancer cells. That's still a mystery to us. Your instincts are correct in wanting to pursue as many points of reference as possible, but sometimes it seems you have to work with what you can get.
  • saundra
    saundra Member Posts: 1,370 Member
    #7
    I will say a prayer for you tonight, too. My oncologist has warned me that there could be a spike in my CA-125 and mean nothing. I have only had CT-scans in my treatment and testing so far. I was told that a CT scan could only detect tumors larger that 1/2 cm. I do encourage you to not worry at this time if you can put it on the back burner. It is just wasted energy and won't you feel silly if it's nothing? I am on medicare and don't know if they would pay for a PET scan or not. ((HUGS & PRAYERs coming your way)) Saundra
  • floridajo
    floridajo Member Posts: 480
    #8
    Duckcreek,
    I hate those numbers!!!Sorry you are going through this again. My Onc usually orders a CT scan, when that came back with more questions,I asked for a PET. because of the fact that I have nodules on my lungs as well as colon cancer the PET was paid for. I do think it's a bunch of nonsense that they don't want to pay for the PET. I tend to agree with Saundra, it could be anything elevating that number...also..for my first recurrence I waited until it did show up on CT scan, but now that I know how to get a PET paid for,I'll be going that way for now on. Good luck..I hope it's nothing...Joanne
  • lizper
    lizper Member Posts: 199
    #9
    I pray that the rise is something not to be worried about. Always think positive.. my Mom who was dx 2 years and months 4 ago with stage III is age 76 and has no insurance, neverthe less she has only had CT Scan which showed nothing and Pet did. She is ptogrammed for a Pet next week and this will be the 4th.. all paid by her (1,700 USD each), plus she pays for all her chemos, Dr.s Surgeries, hospital, etc.. and even so she never hesitates is taking the PET, so always look on the bright side. God bless.
  • Steph65723
    Steph65723 Member Posts: 12
    #10
    So sorry. It it truely amazing how one number can control our lives. My doc does a ct scan. I'll keep you in my thoughts and prayers.

    Steph
  • groundeffect
    groundeffect Member Posts: 639 Member
    #11
    Have you gone through the effort of officially requesting a PET scan in writing? I think it's worth persuing. It's very easy for them to just say "no", but if you make someone go through the time and trouble of denying your request, they may cave. I think it's a shame that this valuable tool is denied to so many. A friend of mine just had to go through a formal request with her insurer, and was successful. Find out exactly what your insurer wants to see, and go after it. It can be done - sometimes! I'll say a little prayer for all of us tonight!

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