Treating CA-125 versus Pet Scan

anyazara
anyazara Member Posts: 1
in Ovarian Cancer #1

Hello, when I moved to WI , I started seeing an oncologist not specific to ovarian cancer in 2018.  There isn't an OB/GYN oncologist in my area.  I was diagnosed in Dec 2011 with stage 3c fallopian tube cancer and have had many recurrences since then.  Every time I do treatment, the pet scan has showed activity.  Now, my number is rising quickly again 589 to 954 in 3 weeks.  My doctor wanted me to start Cisplatin again before even doing a scan.  Is there any information out there I can discuss with him about waiting to start treatment until the scan shows activity?  The CT scan I had earlier this year when my CA-125 was 976 didn't show anything but we started Alimta anyway.  Now after 6 weeks my CA-125 is up to 954.   I did have a Pet Scan yesterday so maybe that will show something.  If not, I'm thinking about asking to wait until the scan does show something or I have symptoms.  Any thoughts on that?  

Comments

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    edited July 2021 #2
    Welcome

    Hi, anyazara,

    This board is always very quiet. I usually interact on the Uterine board which is very active. I wanted to write because it might be weeks before you get a reply.

    i, too, was diagnosed with Fallopian tube cance, Stage 11b in August 2020. You can click on my name in blue box and see what's happened to me. So, I still am a bit of a newbie, without a terrific amount of experience, but I'll offer you my opinion!

    For me personally, the CA125 is not a good indicator. It was 20 before I had 2 surgeries to remove cancerl Ater second surgery it was 66. During my chemo cycles (6) it mostly declined to the 20's, but once went above the magic "35." Very discouraging. After last cycle was 21 and had never gotten into the teens.

    I seem to recall specifically reading an article about beginning chemo based solely on CA numbers. The research article said not to do it. From my own personal experience I have thought there was no way in the world I would agree to go through the h**l of chemotherapy again based solely on that stupid number. With no symptoms and nothing on scans, particularly the very accurate PET, you could NOT talk me into it.

    Hopefully, your PET will reveal NED! I do think your rise in CA is concerning, but more chemo is really tough on you and your body. I think you just have to look at your CA & recurrence history and only you know what that means for you.

    I wish you good luck. I hope someone else comes along to offer help. You can go to other boards having to do with GYN cancer and do a search in the keyword box for "CA125" and I think a lot of threads will pop up for you to read.

    Let us know how you're doing!

    ?, Alicia 

  • annie4145
    annie4145 Member Posts: 218 Member
    edited July 2021 #3
    Can you make a trip to a big

    Can you make a trip to a big city and get an opinion from a large cancer center?   I don't know what I would do in your situation.  The PET scan (hopefully) would show something if something is there...  If the PET scan doesn't show anything, I might not take the medicine until I got a second opinion.   While on one hand, I would want to knock it out, I am also concerned that medicine seems to lose its fighting ability over time as the body gets used to it and I wouldn't want to take the medicine until it was necessary.  (That may be not true and unscientific, but that is what I think happens sometimes.)

  • Chuncha1251
    Chuncha1251 Member Posts: 8 Member
    edited August 2021 #4
    Your question about starting Chemo again

    Have you heard of or read the book "Radical Remission"?  There are many accounts of people who declined chemo, or additional chemo, and regained lasting health in remission from dietary and other changes in lifestyle.  The MD's never tell you this.  It's available on Amazon in various formats, including kindle.  

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