Hi teal sisters. I am 9 months out from completion of frontline treatment for stage IV with a complete response to treatment. My Ca125 was 6000 before treatment and was 5 immediately after. Three months later it was 6 now it’s 8. My dr is not concerned but of course I am having some anxiety with the slow rise.
Can you tell me if any of you have had 3-10 point fluctuations and remained in remission. I know I’m probably being silly worrying about such a small change
Hi Kmastro - Worry is what we do after treatment and every pain, fluctuation in CA125, etc. makes us think "it's back!" - so your feelings are normal. It is not yet time to panic however as fluctuations in CA125 can occur and may be due to things other than recurrence (infection, change of labs, etc.). Mine bounces a few points each time it's taken and whenever it goes "up" it's concerning...however, unless it rises above 35 or unless it doubles in two consecutive tests, they do not generally order additional tests to determine if it has recurred. If you have pain, bloating or other symptoms that may lead them to believe that you have recurred please let them know and you may be able to get other tests to confirm (or prove otherwise).
The waiting is hard...I know for the first year post chemo I walked around like a porcupine in a balloon factory waiting for the "POP!!!" of recurrence. It has been 14 months now since treatment ended and there is not a day that passes that I don't wonder "when" I will recur. (I was diagnosed with Stage 3C - both serous and mucinous OC and with endometrial adenocarcinoma, spread to lymph and peritoneal wall)
If you can, distract yourself with something you love or like to do during these times. Carrying tomorrow's burdens today (through worry) does not prevent tomorrow's challenges from occurring and it only robs you of the precious "Present" of today.
Wishing you many, many years of health and happiness.
Thank you so much for responding to my post in a thoughtful and kind way. It’s really great to know that I am not alone in this journey. Health and peace to you!
Wonderful post .Realistic and optimistic. Prepare for the worst but hope and pray for the best.
I wouldn't be too worried it is still way below a matter for concern. Have you had a ct scan lately, think nowadays they go by the scans rather than the bloods
Trying not to worry.. but you all know how that goes.. My last cat scan was in September and was clear. Your right about the scans. Here at memorial Sloan Kettering they Rely on scans not bloods. I Just don’t like to trend up and was hoping I would here that there were others who trended up then their marker went back down
I'm sure you have no need to worry. My Ca125 went from 12 to 23 I think and then back down to 9 when rechecked. As others will say it is if the number doubles and then goes up again that there may be cause for concern. A slight fluctuation is normal and can vary based on hydration, inflammation and various other factors xx
Thank you for responding. I really needed to hear from someone just like you. Your post eased my mind a bit
Hi there. My CA125 was 3,900 when I was diagnosed, but after debulking and chemo has been anything from 11-14 for the last four and a half years. Like Sticky says, I think I’d only worry if it started doubling, so I’m going to have it checked every six months. Your levels sound great - try not to get hung up on little jumps! Have a lovely Xmas. Deb xx
Mine has settled at 11 post Chemo but did rise to 29. I had constipation issues at the time. My onc retested in one month and it dropped back to 22 and then back to 11 in another month. Many things can affect it.
Hi--I too am at MSK and mine is also going up slowly (on a PARP) but by small numbers like you (5,7,9) and was told no, no worries, that they see this all the time and then see it go back down. It is the trend of doubling or tripling that causes them to suggest/request a scan and then they go by that. I did learn two things that might help: 1) you have good numbers and fluctuations do happen with no relapse and 2) (as my shrink who I got to deal with this worrying/stressing!) asks me to ask myself "how much better a day will I have if I don't worry vs. if I do? What will worrying do to change my day?" It works on my at times and other times I just have to wallow in fear. But I DO try to enjoy as I know right now I can and I not in treatment (maintenance, yes) and I AM having a good time. Anxiety is one of the most difficult things in this journey and I hope the responses help you.
oxoxoxoxo
CA125 increasing, no symptoms, 7 years remission
CA125 count risen after 3 months remission
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