Hi all.
Hoping you are all as ok as you can be.
Had the results of my scan today. All looks fine. That's great. My CA125 though is still rising. I didn't ask what it was. I don't want to know.
I don't have any symptoms so that a plus too. I'm just concerned that my CA125 keeps going up. Could this be a recurrence that's not showing on the CT scan. Would it perhaps show up on a PET scan?
Xx
Glad everything is ok on the scan. Bit baffled by Ca125. My oncologist told me that she cannot find anything on a scan of some women with CA125 of 700. Mine is 400.
Nicky xxx
Hi Nicky. It's really strange isn't it. I keep thinking something must be going on in my body. As long as it's not a recurrence.
Maybe it's just cells floating around but they've not formed a tumour yet. It all gets a bit too much to think about sometimes.
I hope you are doing ok. Xxx
The pet CT shows up much more than the CT but I think sometimes it's best just to go with, the scan is clear, worry about it next time. My scans were so extremely different that I wish I hadn't had the pet. They tend to compare them to the previous one.
LA xx
Hi lily anne.
Thank you for your reply. Yes I think I will just be happy that it's clear. It all gets confusing at times. Xxx
My good friend has had a slowly increasing CA125 count after 2 years of stability, her latest CT scan is clear, she isn't symptomatic so our oncologist has said it's nothing to worry about and he isn't at all worried and has said just to watch and see and next appointment in 6 months with a proviso that if she has any symptoms at all to get in touch. It's difficult isn't it? We just need to be aware of our bodies which we all. Keep as well as you possibly can ❤️Xx Jane
Hi Jane. I've no symptoms and feel very well. Like you say, we just need to be aware of when something doesn't feel quite right.
I hope everything is ok with you. Xxx
Hi Suzanne, well this is the result we wanted for you. Rest assured that there is no visible disease at the moment and run with it. If I remember your CA125 hasn't spiked dramatically but risen gently in drips and drabs. This flipping disease keeps us all on tenterhooks but try to relax for now, although I know it's easier said than done sometimes. My Oncologist really told me off last week for getting so stressed by my CA125 rising from 9 to 18. She said it's not an indicator on its own and the most important issue was symptoms and scans.
PM me if you need a chat.
Love Marian xxx
Hi Marian.
Ahh thank you for your reply. Yes it's been rising in dribs and drabs. The doctor informed me it was still rising when he was giving me my scan results but I chose not to ask what the reading is. He said as you did, that the scan is clear and that I have no symptoms so it's all ok at the moment. They will keep an eye on me.
I've decided that I will let them worry about my health and I will get on with life.
I know a recurrence is highly likely with this disease but I'm just hoping it doesn't come back for a long time yet.
Wishing you well Marian. I hope everything is ok with you. Xxxx
I have had a rising CA125 for quite a while sometimes before anything significant has shown up on my scan. I would take LAs advice and get on with living your lives
Hi
It seems a lot of us have a rising CA125.
I will let the doctors etc take care of my health and as you say, I will get in with living life.
I hope everything is ok with you. Xx
Thank you I am currently on a drug trial. Had my routine scan today and will get the results next week
Which trial is that. I hope it's going ok and I hope you get good scan results. Xx
Hi Suzanne if they can't find anything on scan and you are well then enjoy the rest of the summer. Sometimes our minds go off on journeys and we worry. Think we will always worry hugs
Hi Suzuki.
You are right. I'm going to try not to worry. I will enjoy the summer - if we get one. Lol.
I hope everything is ok with you. Xx
Hi Suzanne
Glad your scan is clear and you are feeling well . Good advice as you say to let your drs do the worrying re CA125 and try and enjoy the summer . Easier said than done i know , I had a routine CT scan yesterday (. 6 months) and will have to wait 2 weeks for results . 😩
Hoping the weather improves as always lifts the spirit 😎 Take care love and best wishes Kim x
Hi Kim.
Thank you for your reply. Yes I'm not going to worry. They are monitoring me so I will get in with living. 👍🏻😀
I hope everything is ok with you. Xxx
Yes. My sister's CAT scans did not always show recurrence. Push for a PET scan.
Hi my ca125 has gone 12 16 21 my onc was not overly concerned, sent me for ct scan but all clear. Next ca125 due 17th Aug, I have no symptoms at all and feel quite wel, onc says it could be microscope.
Ellsey xx
Hi Ellsey.
Yes it might be microscopic cells. I expect that will happen. My oncologist said there's no point treating me again based on the rising CA125 alone. It would need something to be seen on the scan and symptoms. I feel ok. Just a bit of a waiting game I think.
I hope you are ok. Xx
Hi Suzanne
Yes it is a familiar story. My scan last week was clear but my CA125 is rising too rapidly for my liking. I think in the old days people didn't have these blood tests and probably worried a lot less! And maybe some of them didn't recur despite levels going up, who knows? The tests really are a double edged sword. I seem to get stressed to start with then find a degree of acceptance until I'm clobbered with the next one. Try and just enjoy feeling well all you ladies in this position. Hugs, Sophia xx
Hi Sophia. You're right. Sometimes we have too much information which simply results in anxiety etc.
I'm going to worry when I know I need to worry.
I hope everything is ok with you. Xxx
Hi, My CA125 was 7200, CT identified cancer, 6 chemos and surgery finished. CA125 went to 4. We were happy. 3 months after last chemo, on 2.5.22, CA125 was 130. Alarmed with this increase I had PET Scan on 9-5-22 of whole body, which was a clear report. On 11-5-22 my CA 125 was 370. Oncologist decided to wait for a fortnight. Is 'increasing CA125 even when PET Scan is normal', alarming??
Hiya, my Ca125 has been steadily rising over the last six months. In July it had got to 2500 but the scan in the same week showed nothing new, my oncologist has said until she sees something life as usual. I feel well and not back until October to see the oncologist. Xx
Rising CA 125 but clear scan
CA125 ALREADY RISING 
Rising Ca125 on Niraparib
