Rising CA 125 but clear scan: My CA 125 has gone... - My Ovacome

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Rising CA 125 but clear scan

Manchesterlady profile image

My CA 125 has gone from 12 .16 . 18 and after my last blood test has risen to 24 . I had a scan due to kidney stones , which showed no signs of disease. Spoke with my oncologist, who is repeating my blood test in six weeks . I am rapidly going into panic mode .Has anyone else had this .

Thank you

Sheila

34 Replies

Yes I had this kind of increase last year which was left fat too long before treatment. 6 weeks is too long to leave it. Love and good luck

From Angela x

Could the kidney stone be causing inflammation? That would make your ca125 go up I think xx

Hope everything goes okay. Please keep us updated x x x

Yes, and I agree with gemimablackvelvet, six weeks is too long. Hugs

Same here - gradual small rises over last 4 months. Hospital said not significant and scan was clear 3 weeks ago. Speaking to my Onc tomorrow to find out when it would be significant.

Last year my CA125 rose from 18 to 39 in increments. I didn’t have a scan during this time but was having blood tests every four weeks. I was very worried.However, I had had Covid and I guess that the inflammation caused this because as I got better, my CA125 started going down and back to normal in similar increments! The relief I felt was huge!

Yours too may be due to some kind of inflammation.

Maybe ask for bloods to be repeated after four weeks instead of six for your peace of mind?

All the very best

Denise xxx

Hi Sheila, ld ring your team and tell them your worried 6 wks is too long. Your readings are well within normal but you want to know why its raising. Hopefully its nothing to worry about.Take care sending love SheilaFxxx

Hi Sheila , I am feeling very scared at the moment , just feels like when I was diagnosed three years ago .Hoe you are keeping well xx

I know the feeling Sheila l get results from my scan on the 5th Aug always anxious times. But you know l think we all worry about our CA125 rising. And yours is low still, l was worried after my covid injection mine went upafter it. It could have gone up on my first vaccine but l hadnt had blood tests so l wouldnt have known to be honest. Please ring your team and tell them how you feel they don't want you w orried & scared its horrible

Ive been in that situation a few times myself

and its not nice. Sending love & hugs please let me know how you get on SheilaFxxx

Hi Sheila. Definitely don’t leave it 6 weeks. It’s not good for you to feel panicky and anxious. Ask for a repeat test after 3 weeks. Always listen to your body I’m sure they will order these tests for you if you explain how you feel. Maria x

I had similar. If it's not visible on the scan I think it's a good idea to leave things for a while - after all if they don't know what they're treating they can't measure if the treatment works! Six weeks isn't very long even if worst case scenario something is growing rapidly. Hopefully it's just a blip.

There are many reasons why your CA125 could rise and your kidney stones could well be one of them but it is good to get it checked for your peace of mind. Your concern is understandable but your readings are still within normal range. To answer your question yes I had a similar increases in CA125 early last year over a period of four months. As you can imagine it was almost impossible to get any sort of test or scan done but I stuck with it and made a nuisance of myself until I got some results. It all took far too long. Your concerns are valid so ask your CNS or oncologist if blood test can be brought forward. Of course this does depend on how frequently you have already been having tests. I hope this gets sorted satisfactorily soon. 🤗 Jackie

Hi Jackie, I have had s blood tests every six weeks for the past three months , rising each time ,scan was clear at the end of June .i am wth the Prof at Christie’s. Who I’m sure will do another scan if my numbers haven’t dropped. Can’t face this again xx

I really understand your panic. The not knowing is bad enough but the thought of possibly having to go through treatment again is really daunting but somehow we do it and do it again. Anything to get some control over this miserable disease. If you are freaking out talk to your CSN about your fears of cancer recurring. She will be able to point you in the right direction for some counselling to help you with this. I have had these dark thoughts from time to time and found it helpful to find lots of distractions until I can work through it. These days I'm just trying to live my life to the fullest I possibly can before I start my next round of chemo. It is normal to think "I just can't do this again, but somehow we all seem to find the strength to push forward and get through it. Sending lots of positive vibes. Jackie🤗

Your oncologist should be able to request an inflammatory marker blood test, just had one done in last hour as had few temperature spikes and was feeling tired, just about to have 2nd chemo this week Thursday, 6 weeks is a long time to wait.

You will find posts here of all kinds of jumps. Don't worry. Wait for 2nd blood trxt

CA125 can rise and fall due to different causes of inflammation, not just cancer. Mine rose over 40 points and then fell back into normal range. There is also a 3-4 month lag between rising CA125 and when new growths appear on scans. I understand the panic, having lived with this disease for 6 years. I no longer panic about my health as it ruins the here and now. If worry could cure me, I'd be cancer free.🥰I'm sending you a gentle hug and positive energy.❤

Lovely to see you on here Tesla ,haven’t seen you for a while , you are such a supportive member .I know it’s pointless to panic , but I completely lost it yesterday. I have an excellent oncologist who I trust ,so will have to go with him I think .

I’ve been having repeated urinary infections,and he thinks that is causing the rise . Had a clear scan a month ago to kook for kidney stones ( I had passed one, very painful ) he will do another scan after my next blood test . I will ring tomorrow to get it brought forward.

Don’t want to go back to that dark place again.

I so hope that you are doing well .

Love Sheila xx

Sheila, I am doing well. I'm having carbo right now for 3rd recurrence, grateful it still works for me. I've been worn out for so long fighting this disease that I no longer have the energy to worry about it. 🥰 I'm happy and grateful. Love and hugs to you. 😍

My mums bloods have gone 17-19-27-35-36. We had a scan at 17 and a scan at 35. Both are clear.

They have put her on tamoxifen for 6 weeks and to check bloods then.

The doc isn’t sure but thinks something might be there but slow growing. They won’t treat numbers anyway, just symptoms.

The 35 to 36 was in 4 weeks and was 2 weeks ago.

Stuee01 profile image
Stuee01 in reply to N-A-58

I would ask for a PET scan as it can detect cancer much earlier than CT scans...

Thanks for your response,so confusing when there’s a clear scan .hope your mums numbers come back down ,as you say they don’t rush into treatment. This is a very scary disease. And I’m not brave

Hi Sheila. I can’t help with numbers since mine are useless which is its own kind of scary. It sounds like there are many reasons why your numbers might have gone up and you have one of the best oncologists in England, so whatever happens you will be okay. I know the dread of going back to chemo after returning to normal life is terrible. I hope you won’t have to. Sending positive vibes and hugs.

Thank you delia2. I do feel privileged to be with the prof ,and he is so kind ,just can’t face going through all that performance again. I haven’t slept for two nights now doing the what ifs . I hope you are doing as well as you can be . Sending hugs back x

OvacomeSupport profile image
OvacomeSupportAdministrator

Hi there Manchesterlady

I’m really sorry to hear that you have been feeling so worried. I can see you have had lots of informative and supportive replies from the forum community so just wanted to pop by and share this resource, in case anyone may find it helpful in understanding more about the role of CA-125.

The Foundation for Women’s Cancer are a non-for-profit organisation based in the U.S, who support research, education, and public awareness of gynaecological cancers. They published a booklet in 2017 titled ‘CA-125 levels: Your guide’ which explains more about CA-125 and how it is used in a medical setting. It’s available to view via their website here: foundationforwomenscancer.o.... As this is a U.S resource, the organisations listed at the end may not be as relevant for our U.K/ non-U.S members.

If you would like to talk through any of your concerns with a member of the Ovacome support team, there are a range of ways to get in touch. You can speak to us via our Support Line on 0800 008 7054 or 07503 682311, by email at support@ovacome.org.uk or via the Instant Chat function on our website. We are also available to talk by booking an individual video call if that may work better for you. All our services are available Monday – Friday, 10am – 5pm. We are happy to chat through anything at all, you do not have to have a particular question or query.

I do hope that the booklet is helpful and that your clinical team are able to give you some more clarity soon.

Best wishes

Annie

Ovacome Support

I as well had a rise in ca125 counts. I felt something "crawling around". I knew it was back Dr did CT scan and told me as well no visible changes but ca kept rising. Finally 4 months later they did a pet scan and sure enough it had spread to my lymph nodes. Now back on Chemo after only one year......you know your body better than anyone else. CT cannot see anything smaller than a centimeter. Pet shows everything.

Thanks for your response . It’s very scary when even after a clear scan , it’s still lurking in the background. I hope your treatment goes well for you . I hate this b....y disease, it plays havoc with my mental health.

it plays with all of us! I wish there was a way to block it!

Don't want to be simplistic and you probably already have heard this, but there are so many things that can raise a CA125, as my onc reminds me all the time. A cold, a vaccination, covid (!), certainly kidney stones, on and on. I'm saying this so you don't panic (and someday hopefully someone will say it to me, too!)

Hiya. Yes, happens frequently to me. My ca125 has never been below 63 since first diagnosis. Currently at around 80 (sometimes a few points up or down). But no obvious tumours in sight. So I try (the operative word here is 'try' ;) ) to relax about it and live my life.. while keeping an eye on the marker every 3 months. As long as it doesn't jump wildly, in my case, I can apparently just sit it out. Going in with treatment too early will likely not lengthen my overall survival time, says my oncologist. Once it climbs more steeply and quickly, I guess my next recurrence would be knocking on the door. But to keep in mind that mine is a rare form of OC.. low grade serous.. which is lazy and presumably grows more slowly than the prevalent high grade variant....which might warrant a different approach.

It's good that you are closely monitored (you could ask for a PET scan, if feasible?) ... so your medical team can pick up anything untoward should it get to that point. Hopefully the count will just go down again or stabilize though. Best wishes. xx. Maus

I haven’t experienced this personally, but just wanted to echo what others have said about contacting your team to say that 6 weeks is too long to wait for another reading or a scan. I was told I can request a CA125 reading every 4 weeks if I want (assuming they haven’t already taken a reading from me in that time).

Wishing you luck, Annie x

Hi. My CA125 has been at 8 for over a year. I got my regularly scheduled labs/CA125 in June... It was 20... 3 weeks later 62... 3 weeks later 491! My CT's are all clear, brain scan- clear, PET scan- clear. There is no sign anywhere. However, I am getting bloating from fluid in the abdomen, and pain when I pee... (The last bit of urine that comes out feels like sand paper.) (Also, urine test came back clean as well.) Anyway, my oncologist explained that all of the scans will find a "meatball in a bowl of spaghetti". However, they will NOT show "icing on a cake". So, If the cancer returns as a thin layer of cancer cells on something, scans will come back clean... Needless to say, I start chemo September 8. Bummer! However, we all will do what we have to do to battle this stupid disease... and win.

Hi Sheila, how you doing did you get your CA125 test done again l know you were worried about it going up. Take care hope your ok. Love SheilaFxxx

Hi Sheila, no I haven’t had it done earlier, waiting for the 9th of September as planned. I was having a bit of a melt down I think .Prof J said because my scan was clear , he wasn’t concerned . I have to trust what he says otherwise there isn’t much point in seeing him ,and people travel from all over the country to see him . If my numbers are still going up he will scan me again. Also I haven’t finished my course of antibiotics yet . I’m going to my go tomorrow to discuss my anxiety,as it’s getting the better of me at the moment. How did your scan go ?

Thank you for asking about me , it means a lot .

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