Hello, I would be keen to hear whether you've had follow up CA125 blood tests and CT scans to monitor whether your ovarian cancer is kept under control following treatment.
I've had debulking surgery and my last chemo for HGOC stage 3c. I'm starting on avastin until October next year, with blood test every three months. My oncologist is saying that the blood tests and CT scans will stop at the end of the avastin and they won't carry out regular follow up investigations, which is making scared. I only had sympthoms when the cancer was advanced.
I would have thought that at least the CA125 should be monitored.
I had a CT scan before my last chemo which has come back clear but the CA125 was 51. They will do another CA125 test this week as well.
I would appreciate to hear from ladies who have completed their treatment. Should I ask my GP for regular blood tests if I can get them through my oncologist?
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Alentejo
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Hi,I have hgsoc and my op nearly 9 years ago now. I always understood that they should check ca125 3 monthly, then 6 monthly, then annually until 5years is up. I used to see Oncologist after bloods were done,over that 5 year period. Fortunately I did 4.5 years before the cancer returned. Since then I have had 2 recurrences,which have been treated with chemo and after first recurrence was on a parp. for nearly 18mths. Avastin was not available when I was diagnosed. I wish you luck with avastin. Have a good Xmas.x
I have blood test every 3/4 months to check CA125 and other parameters (liver, kidney, white cells, platelets…). I don’t have a CT scan unless there are symptoms or bloods look abnormal.
I finished treatment in March 2022 so in my last appointment I was told I will have a CT because I haven’t had one since then. It makes sense.
I am always surprised we all have different surveillance approaches. I would query the reasons for not having any follow ups after finishing treatment. I thought it needs to happen for 5 years at least.
If your CA125 has been a good marker for you I would ask your GP. It isn’t an expensive test for them to run. With monitoring they will be able to spot an upward trend if it ever occurred.
I had follow up appointments every 3 months for the first year, then every 4 months, then every 6 months, then annually. I was discharged after just under 5 years and have remained NED ever since (17 years altogether now). My GP does a CA125 if I ask for it, but I haven't had it done for quite a while now. I think there is an increasing trend to having follow up done by GPs.
Hi, I've never been on any maintenance drugs but also had stage 3C in 2013. When my five years were up I asked my doctor if I could have CA125 tests every year and he said he'd do them every 6 months. It's not instantaneous, mine took 10 weeks in the wait list for the test and another 7 weeks for the results. All the best for the future and don't give up asking. x
Hi I am on avastin and have my last one on 19 Jan 2024 I also take lymparza and have to take them for another year but I will be having my bloods done ever month and ct scan ever 3 months to keep a check on me I have hgoc3c I got diagnosed April 2022
Hi, I was told that scans wouldn’t be done as bloods and my reporting would be far more accurate. My CA125 is a good indicator (not everyone’s is which is why it’s not a diagnostic test) but I’d also add I’ve not been on any maintenance treatment.
I was initially on a 10 year follow up but The Christie has now changed this to 5 years which will be next year-follow ups were as others have said, three months moving to six and then annually.
I guess your real question to your oncologist should be how long he sees you being on Avastin and if there’s a recurrence, what options are open to you. It’d be unusual for them to simply say there’s no follow up after this treatment without any context. X
I was diagnosed with stage 3b cancer in 2018 and was NED for almost five years before a recurrence. I, again, had carbo/taxol chemo and am currently NED again. After finishing chemo, I was placed on a PARP inhibitor, but it devasted my blood counts which means I can no longer take it. My oncologist will continue doing CA 125 tests as well as a newer test from the Signatera company which detects the cancer much, much sooner and is supposed to be more accurate than the CA 125 test. I will have this test done every two months.
I finished treatment in nov 2017 - HGS stage 3 b and was discharged in feb 2023. I’d been having symptoms bloating etc and Gp did a ca125 in May after much persuasion. Still having problems and went back in nov 2023 and GP refused to do as they wouldn’t know what to do if it was raised. Wasn’t happy so contacted the hospital who had treated me. They saw me immediately and did a ca125 and full body scan. Excellent service from the hospital, my Gp practice is rubbish. Hospital will monitor me for another year. I have bowel issues basically scar tissue and now diverticulitis. If you are not happy with the monitoring don’t ignore it x x
I would contact the support line perhaps and get some advice. I would've thought you'd go to 3 monthly blood tests at a minimum after finishing treatment especially with being diagnosed Stage 3 HGS. I also think it's strange you're having 3 monthly blood tests on Avastin, are you having an infusion every 3 weeks? I thought you had to have blood tests every 3 weeks whilst on this. Definitely ask for clarification and never be afraid to ask questions of your team. Good Luck. x
Thank you so much ladies, it's good to hear the confirmation of the need for follow up tests after treatment. I might call ovacome and macmillan for advice. I will also contact my GPI also asked a nurse on my medical team who confirmed what the doctor said. They wouldn't do any checks unless I had sympthoms. Well, that's not reassuring at all.
hi Robb, I’m sorry about your situation, I had debulking and complete hysterectomy this past February. My doctors are monitoring my blood levels and ca-125 every 3 months. I started Zejula this October so had blood work every two weeks. My levels are maintains, although my ca-125 is elevated. It is now 230. My drs are not concern at this point as I do not have any pain or symptoms. They said many things can make it increase. Will get a scan in January again to make sure. Had two scans already this year. I think it’s important the drs continue to monitor the blood levels. Discuss your concerns with them. Stay strong, try not to worry. Happy holidays!
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