CT scan clear but why CA125 rising?

Following 2nd line chemo (Carbo, Gem & Avastin) CA125 already rising. Only got the CA125 down to 471 but nevertheless no evidence of disease on the scan. On Avastin only now. I feel pressure low in my abdomen and like I want to go to the loo all the time. Has anyone else had a clear scan and still had the disease doing something? Is it lining things in the pelvis which can't be seen? Lovis

9 Replies

  • Hi Lovis.

    My CA125 Dropped to 29 with Gem/Carbo/Avastin but began to rise after 12 months on Avastin only. They did two CT scans and could see nothing (NED) however with my CA125 rising they believed there was something there so they did a PET scan. The PET scan showed activity on a minute level in my thorax (Hot Spots). It was totally invisible on the CT scan. Can you ask/get a PET scan? Might be worth it if you can.

    I'm on Etopiside and Carbo now.

    Wishing you all the best.



  • Hi Im on same treatment at moment ,only startin !!!! how did u find it ? Makes me very tired flaked out !!!!

  • Hello. I generally feel very well but tired today after having Avastin. My blood pressure has got a bit high now though 150 over 82 which is a well known side effect. Lovis x

  • Hellooo

    Same as you treatment wise. Just coming up to one year on Avastin ( including the time it was taken with Gem/Carbo).

    Ca125 creeping but still normal at 19. A few odd sensations recently. More pressure or almost sensitivity around bladder/bowel.

    Onc has been suggesting scan for a month or two but have said no on the basis if it's not broke don't fix it! However am getting another 125 done in two weeks so think I will then agree to scan at that meeting.

    No pain or discomfort but wondering if all is well ....


  • I finished the same regime in January and continued on Avastin for a couple of months. I came off the Avastin because a CT scan showed some suspicious growth and my CA125 was still rising.

    After reviewing the areas on my CT scan images my consultant decided they were so small that I would benefit more from a treatment brake. I absolutely agreed with him and for the past three months I have been getting on with the business of living. I have been feeling fine still suffer with constipation but I don't feel bloated and my appetite is good.

    I had a CT scan a couple of weeks ago before my 3 month review. There was no new growth and some shrinkage so everything has stabilised. I have a tiny pleural effusion which could be caused by a cough or a chest infection but I have had neither. I rang to get my CA125 results and my CA125 has gone up to 243 so I am feeling a bit perplexed as well.

  • Thanks for your reply. Have you ever had a PET scan? We don't have one at Ipswich. How do you treat your constipation? Have you had it since the chemo? Lovis x

  • I have never been offered a PET scan although they do them at The Christie. I have had rather a lot of CT scans recently so I think my consultant would be very reluctant and I am not absolutely sure where I got this from but they may not be very effective for low grade cancers but I would need to double check that.

    Just as I was typing the above my consultants secretary rang they want me to do a repeat scan in 2.5 months so I have raised the question of a PET scan.

    I have suffered with chronic constipation since my diagnosis three years ago. Sometimes I can manage it with diet other times I need to take laxatives. I find movicol and laxido a bit strong often I develop diarrhoea so I prefer lactulose with maybe some sodium docusate and sometimes I might add some domperidone into the mix. Of course treatment makes this worse.

  • Hi Lovis, pleased scan was clear but understand your concern. PET scans can be useful in high grade cancers , and each region has one , may have to travel to nearest big centre for one. Certainly can sometimes give alot more info, mine certainly did, but less useful on lower grade cancers. They are expensive , so only offered if felt would be useful by mdt team including mdt radiologist, but definately worth asking about. Was wondering how you are . Constipation can often cause lower abdominal pain and pressure on bladder sensation. Movicol sachets usually work plus lot of fluids , veg and fruit. Sure your gp could help . Ive had constipation/ abdominal pain since my first surgery and chemo, think your bowels takes a battering with all the treatment and never fully recover

    hope youre felling better soon

    Hilary xx

  • Hello Hilary, How are you doing? I was really pleased to hear from you again.

    Love Lovis xx

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