Hi all. I was seen today, had a chat about any symptoms (none) and had abdominal examination. No ca125 as my oncologist follows the cancerresearch.co.uk findings that this is not beneficial. See below. Further follow up for 3 month unless problems, when I can contact the lovely CNS nurses. Happy girl!!
CA125 blood test
Doctors used to use routine CA125 blood tests to monitor the growth of ovarian cancer after treatment. CA125 is a protein that some ovarian cancers make and release into the bloodstream. The bloodstream level of CA125 can sometimes go up before there are any signs of the cancer on scans.
Some women became very anxious when they had this test at each appointment. A large trial looked at how useful routine CA125 testing was as part of follow up for ovarian cancer.
The researchers found that giving treatment as soon as the cancer started to grow back worked no better than waiting until symptoms developed and then starting treatment. People having treatment earlier might also have a lower quality of life because of treatment side effects.
So now, doctors usually don't routinely test for CA125 on women who are well and have no symptoms which might be a sign of the cancer coming back.
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BanksiaRose
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I would have an issue with the Cancerresearch approach to CA125 blood test if it was applied to me as my CA125 is very indicative of recurrence and I have never had ANY symptoms, either at diagnosis or recurrence. Also, for me, having treatment early is as much to do with my mental health rather than waiting for the cancer to grow and cause further problems, so for me the approach they are advocating for the CA125 is scary. Keep well xx Kathy xx
Thanks. I do see your point. I guess ‘one size doesn’t fit all’. My GP has said he can arrange for Ca125 if I really want, so there is a backup option! Best wishes, Sandy
Hello... I know that everyone is different but I have to say that if I had gone on ca125 alone last year I would have had chemo for no reason.... I think it is good to question everything! Best of luck xx
As you say we are all individuals as our cancer but I’ve been told that my CA125 is a good indicator so I’ll be insisting they continue to monitor or paying for it if needed. I need it for my peace of mind and would be more anxious without it.
I had no symptoms until I was diagnosed stage 4 so I want to know if the cancer is on the move again even if they delay starting treatment. If early diagnosis is key when we are first diagnosed I find it hard to understand why early warning of reccurance would not be preferable.
Especially since research has now found that secondary surgery is beneficial where possible if it can get you back to NED.
I think the important thing is that they listen to us as individuals and agree a monitoring program that allows us to enjoy our treatment free time with peace of mind , for some that may be 3 monthly tests if appropriate. I was so impressed when I had a second opinion at the Christie as was told that they discuss the monitoring with patients and agree a plan.
Have my 2 year post treatment oncology appt tomorrow and will be getting my CA125 and CT scan results so fingers and everything else crossed 🤞
So pleased you have had a good 3 month review and wish you many many more.
I will continue insisting on the ca 125 as well so I can make plans. It's the only real indication we have (I never had any symptoms in the first place) and whilst I understand about the chemo dilemma, I have other ideas for alternative treatment which I'll start as soon as I'm not happy with the CA 125. I think it's appalling to take it away from us and when I read the actual study it recommended that the situation was explained to patients and they were given the choice of whether or not to have the blood test - not the blanket ban they seem to be trying to push.
I too have an issue with denying you a CA-125 test.
My Oncologist offers this as routine at every consultation and it works as a barometer for how her patients are faring.
Like many of us, I had no symptoms before my cancer had riddled my body.
When I had my first recurrence, I felt terrific. A physical exam would have turned up nothing, but my rising CA-125 called for a CT scan, which revealed the new growth.
If I put off treatment, perhaps this new growth would have begun to invade one of my vital organs.
I don’t believe it could possibly be of benefit to anyone to delay treatment that could stop the further growth of what is always described as an aggressive cancer.
If I were you, no matter how good you may feel, I would keep tabs on this vital clue to what might really be happening inside you.
Hopefully, you will be fine, with a normal low score and you can really breathe a true sigh of relief and get on with your life for the next 3 months.
My consultant refuses to do a CA125 test even though I have said I want one. He insists it is for my own good.
I appreciate that the tests caused anguish for many ladies, but for me, I would rather know. We are due to meet again early March and this time I will be telling him that I am going to pay for the test privately.
That's what I did, and once I threatened that she backed down and agreed to do it. It's a fight every out patient appointment though. I accused her of cost cutting last time - that went down like a lead balloon
Ca125 is not a marker for me - I have a recurrence, & my latest ca125 is 8. Yet my oncs insist on checking it every time, even though they expect it to be low. Di
CA125 is not a good indicator for me just finished treatment for reoccurrence and ca125 remained at 13, original dx ca125 was 790 oncologist used ca125 as a marker to see how well treatment was going.I have been told it is not reliable for me anymore, also this can happen but don’t know why.
Well done on getting through your first review and long may your future reviews be without any worrying signs .
When I read your post about the usefulness or not of the CA125 I had to give you my experience and my personal thoughts on the subject.
I consider myself a veteran and like many of the women who replied to you, I have been there and bought the T shirt ! I was diagnosed with stage 3C high grade serous PPC in 2011. My CA 125 was 8000 and before I was treated with Carboplatin/ Taxol I had 7 liters of ascites drained. I was inoperable by the way.
At each chemo session I was given my CA125 and it fell rapidly until by the time I finished it was at normal levels. I was now on 3monthly reviews. On my first review I was given my CA125 which was still normal . On the next review I got the quotation you have copied to us. From then on for three years I was refused the test each time I asked. I was told it would make me anxious ! How condescending is that statement ! I consider myself an intelligent person and I will decide what makes me anxious . Not getting the test drove my anxiety levels and stress through the roof.
I continued like this until 2015 when my GP seeing my stress did the test . It came back normal . I will always resent the fact that I could not enjoy my 5 years NED because someone chose not to reassure me with a simple test. It finally returned in my lymph nodes in 2016 and I won’t go into the stress of not getting the standard treatment for recurrence which is Carboplatin/Taxol . Carboplatin only resulted in my recent recurrence in same lymph nodes. I am now after my second round of Carbo/ Taxol with 4 to go and my recent CA125 is 196 .which I hope will come down .
I do think that as we are all different we should have a choice of getting the blood test for each appointment. It is not ideal but it’s the best on offer for OC and PPC. I will allow that it shouldn’t be used for screening. Having said that I wouldn’t be telling you my story now if a vigilant locum hadn’t taken my bloods and sent them off without telling me why.
I respect women who would prefer not to know but I also respect the women who really get anxious not knowing . It’s not a good indicator for some women but for women like me it is a really excellent indicator . I did continue to get my GP to do it before each appointment and I was happy with that .
I hope that all goes well for you and that all your appointments will result in good news. Take care
Thanks for your comprehensive reply. I do agree that we should have the choice about whether to have routine CA125 blood tests. It should be up to us to decide if we can cope with the results, good or bad. As you so rightly say, we are all different. I may well have it done by my GP if I get stressed (he says he will do this).
Thanks for your good wishes. I hope all goes well for you.
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