Ca125 went up

Hi all,

Haven't been on for awhile as my treatment ended august of 2016 and have been enjoying being cancer free. I gave blood work last week and my ca125 went up to 181 from 23. I feel fine, no symptoms, my doctor ordered a ct scan which I had yesterday. No results yet but am scheduled to see my oncologist next week. I am worried now that my cancer is coming back, and so soon.

Anybody here have had recurrence so soon? And should I be very worried about my ca125?

18 Replies

  • I had primary peritoneal carcinoma stage 3.

  • Hi, yes, I finished 2nd line chemo last August, and am now waiting to see what my blood test will reveal as after last 4 tests over 2 months, my ca125 has been rising, and now at last test was 400+ I have had a scan and that was ned, so we will see what Friday brings when I see my oncologist. I also feel fine, infact the best I have felt for about a year!! I think we just have to be strong and hope the rise is a false positive, and if not then we have done it once, twice, and can be done again!! be strong, hugs.

    Jeanette xxx

  • Thank you Jeanette for your reply. You made me feel better about the ca125. I guess eventually we all go 2nd line, 3rd line.... I would just like not to ... I feel much much better. This game is wait and see.

  • It's gone up but no symptoms so scan results should give more detail. If nothing shows then watch and wait with maybe another CA125 test in a month or less.

    If NO SYMPTOMS then starting treatment for a possible recurrence does not necessarily help.

    It's a worrying time and I'm sorry to read your news, I'm sure you are aware of the myriad of other things can CAN cause CA125 to rise though we always forget these things, It's human nature .

    Try to keep calm , not easy I know. Be aware of your body

    Thinking of you

    Clare xx

  • Thanks Clare, I feel better. Still worried, I get my results of the ct scan day after tomorrow. Yes, I do not want to start treatment if no symptoms and scan comes up NED.

  • I've been NED with a CA125 of 10 since 08/2015. Now my CA125 has risen to 17 so yes, mine is rising too and I have no symptoms. It's worry time! My numbers are very low but protocol says if the CA125 doubles a CT scan should be done. So, I'm waiting for another CA125 result to come back from the lab and if it is still 17 or higher, I will have a CT Scan.

  • Hi Karen,

    I wouldn't worry at all, ca125 range is as high as 30, I believe and that's considered normal. I would not do a ct scan again.

  • Hi,

    I know exactly how you feel. I had my last chemo for 1st reaccurence 23rd Dec 2016, after over 3 years since diagnosis .in Jan 2017 NED, bloods down to 20. At my first check 2 weeks ago my ca125 had risen from 20 to 80. I had my bloods redone and a scan 2 days ago- I have clinic on Monday so will get results then.

    I feel well and had no symptoms- until the day after i i was told?? Some bad cramping ,

    But as I have bile acid malabsorbtion ( due to having some intestine removed at debulking in 2013) this gives you very similar symptoms (bad cramps constipation , diarrhea ).

    I am brca1- I beat breast cancer in 1999 and have been fighting ovarian 3c since may 2013 -we have done it before so onwards and upwards!!

    Thinking of you

    Carolyn x

  • Hi Carolyn,

    Wet are fighters, aren't we! I too am Brac1 positive, I too had breast cancer in 2007, I too had ovarian cancer in 2008. Was NED until Feb 2016. I had a long stretch thinking the nightmare of cancer was all but a distant memory and then.... WHAM! PRIMARY peritoneal cancer stage 3. Finished chemo august 2016, and now 6 months later ca125 up to 181 from 23. I knew recurrence was possible, just didn't think so soon. My hair is just now coming in really cool!

  • hi Rienesue,

    Wow you have got through 2 cancers in 2 years then 8 year remission that is great 👍

    It's a bit of a downer when the bugger decides to wake again you have had 6 months since the last one so at least your veins have had a little rest. Are you able to get on a trial?

    Get your fighting pants pulled up high!! I am with you on this 😀 I was gutted when mine came back after having my last chemo 23rd Dec 2016 after a good remission from my first diagnosis. It's only 2 days since my 2nd reaccurrence was confirmed but I have my wurzel gummidge sensible head on and my granny fighting pants pulled up high. We are living with this and I am determined to enjoy every minute. This girl isn't falling off her perch anytime soon.

    Carolyn xx

  • Yes, I was in remission for 10 months. Also, had single digits and started to climb. I too was so disappointed but this is nature of this disease. I have the braca gene and started a new drug Rubraca after the second 18 rounds of chemo. Upsetting to say the least. Having a blood test on the 21 and that will give us an indication of what's going on.

    Good luck to you

    Carole Lynn

  • Wow, Carole Lynn, sounds like you've been through it too. THAT'S a lot of chemo. Rubraca is a new drug? I haven't heard of it. I wish you the best of luck.

  • Hi Rlenesue,

    I was diagnose 3 years ago had my first recurrence after 6 months back on chemo, 3 month other recurrence back on chemo. took a break (my Choice) I'm now on my 4line Chemo.

    It can be a hard battle but worth it try not to worry about your 125 as Jeanette said this could be a false positive

    Best wishes for your results

    Cheers Lorraine xx

  • Thanks, Lorraine... Us women will fight the good fight!

  • Hello, sorry to hear you are feeling worried. Try not to panic just yet. I have been NED since March 2016 but my ca125 just jumped up to 760, and scans confirmed it has returned, but I feel pretty OK so no symptoms yet. Try not to worry until you see your consultant. Other factors can make it rise too xx

  • The only other factor the doctor said to raise my ca125 was scirosis of the liver. Are there more? I don't drink. ARre you going through chemo again? .thinking of you and feel for yiu.

  • Things like inflammation somewhere can raise it too. I will probably have to start chemo again. But I am researching all other options first and have had some superb secon opinions in London this week. I hope you are doing ok?

  • Can inflammation like lymphedema cause rise in ca125?

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