Rising CA125- confused !!

[Rhonddalady]

Hi, hope you can help I'm very confused at the moment. I was diagnosed with Primary Peritoneal Cancer ( treated as ovarian cancer) Feb 2020. Great results after chemo, debulking op and 2 years on Olaparib. The last 5 months my CA125 has been rising the most recent being 742 . I've had 2 scans and no sign of cancer but I do have hernia and gall stones in my bile ducts. I am aware that these can cause a rise in CA125 but it does seem extremely high . Has anyone experienced such a high rise in CA125 without a recurrence? Thanks Jan x

[Caleda4]

Hi there, CA125 is not the only thing, but they can tell more regarding scans. If you have other things ,that maybe causing inflammation like gall stones in the bile duct,then this would probably increase CA125. My CA 125 is 372 and some of my cancer has shrunk,but in a couple of places it has increased minimally. I have been on watch and wait since last since August 2022. I was diagnosed 2015, hgsoc . Will be 79 towards end of this month,so feel very lucky. Last year In 2022 I went for a second opinion,and was told, If you feel well, CA125, and scan will determine if you need further treatment, as they try to keep you off chemo for as long as they can All Oncologists are different and have their own views of course. Try not to worry to much,which I know is difficult. Take care, sending you good wishes for 2024.x

[Rhonddalady in reply to Caleda4]

Hi thanks for replying, you're right I think it's the watch and wait that can be stressful, like you I consider myself very lucky to still be here. I have a surgical team on my case looking at the other issues that cause CA125 to rise, I know I'm in good hands. I hope you find 2024 a good year too .x

[Lyndy]

Hello, I was on watch and wait for 2.5 years with ca125 rising but no obvious site. Then suddenly I had double pleural effusion and lots of symptoms.

Don’t get me wrong, I had a lovely time being off treatment and living my life but things suddenly went pear shaped.

A PET scan would give you a better idea of whether the cancer is active or this is down to other issues but these scans are expensive so they tend to be rationed… xx

[Rhonddalady in reply to Lyndy]

Hi Lyndy, thanks for your reply. My Oncologist has mentioned a PET scan, having bloods done again next week, I think she may decide then . She did say she was as puzzled as I was at the increase. My medical consultant also mentioned an MRI scan. I'm well enough otherwise , keeping busy and grateful that I'm still here after 4 years and that my ongoing treatment and support from the NHS has been amazing. Hope all goes well for you .Thanks again Jan x

[Leniko in reply to Lyndy]

My CA was rising. I insisted on a PET Scan. Sure enough, the tumor on my Psoas muscle showed signs of growth. Insist on a PET.

[Sarathecarer]

hi Rhonddalady

Just wanted to leave you a little message to try ease your mind. I will start by saying I never had cancer but I did have a borderline tumour and had to go down the cancer surgical route. I had a radical hysterectomy last year age 39 and am currently on hrt. I have check ups every 6 month, I’m very lucky as everything has been great since. I just wanted to say before I had my surgery I had my ca125 bloods done and they were over 500 and kept rising until surgery. Please try to not worry as I didn’t have cancer, my Gp said lots of things can cause these to rise. I would agree with others stay persistent with your doctor and make sure all further scans are carried out to be completely sure nothing is reoccurring.

Good luck with everything big hugs you are amazing like all the women on these forums xxxx

[Rhonddalady in reply to Sarathecarer]

Thank you so much for replying and your kindword. Knowing your CA125 was that high is very reassuring. Glad you're ok xx

[Sarathecarer]

your very welcome, I was the same as you when my Gp said it was over 500. I didn’t know anything about this blood test, what it meant and what the Gp would expect it to be. By the time I had surgery it was way over this and my biopsy came back as it been borderline. My Gp did say even been on your monthly cycle can make this test rise and other things like hernias etc can cause this.

Lovely speaking to you good luck with your health going forward. Keep strong and positive xxxxx us women are stronger than we realise xxxx

[Agau]

Sometimes CA125 is delirious, it had already gone up then down and now in one month it's gone from 1400 to over 5000. I was convinced that the cancer was recurring, but yesterday's CT scan showed no more ascites slide ... almost everything's gone, so I don't understand this marker at all.

During the first three weeks of taxol, it had dropped from 3000

[Rhonddalady in reply to Agau]

Wow !! There's me worrying about 742 ! I really hope you remain NED. Thanks for replying wishing you all the very best for 2024 xx