A quick question to you ladies if I may. My wife died of OC in Aug 2013, and was diagnosed a few weeks after going to A&E with terrible stomach pains in Sept 2010. Before that there had been nothing that would have suggested she was ill at all. When we got the diagnosis we asked when she would have been likely to have actually got 'it' ie how long had she had it before any symptoms presented themselves. We were told 12-18 months...probably.
So my question is....do you know how long for you, and if so how long was it?
In the case of my wife say for example a CA125 test taken annually could have discovered this months earlier....that is assuming an elevated test result, plus of course the doctors investigating that elevation.
Personally I think the offer of a test annually to every lady over the age of say 50 could help earlier diagnosis/discovery. My wife had high grade serous (3c) - I guess possibly that could have been grade 1 or 2 if found earlier.
This isn't a blame on the medical profession, more an observation that because it does creep up unnoticed, and because there is no identified 'test' for it....offering the CA125 test, could potentially ensure many when diagnosed might be a stage or two lower!
That aside I would like to say the best of luck in your 'journey'.... since the death of my wife, well way before really, it does appear that Parp Inhibitors & targeted chemo will play a big part in the treatment and survival outlook for those with OC....I certainly hope so.
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HI I am stage 3 on diagnosis (Oct 2007) and I would say that I 'got it' late 2006 . I actually had no symptoms and mine was picked up because I had a post menopausal bleed which on mentioning it to my practice nurse she decided warranted investigation. I was sent for a hysterscope in April 2007 where a 'cyst' on my left ovary was discovered. ' You have a cyst' I was told, I said I bet it's not harmless because my mum had 'cysts' which turned out to be OC. In that case said the Consultant to put your mind at rest I will carry out an ultrasound scan in August but do not expect to see anything untoward. Fast forward to late August. That's a large 'cyst' on your right ovary....... I said the 'cyst' is on the left....... Fast forward to MRI scans, CA125 and an operation at the beginning of October, still no symptoms but a diagnosis confirmed of stage 3 OC and a positive BRAC gene test. Unfortunately a test over 50 wouldn't have helped me, I was diagnosed at the age of 48, my mum was diagnosed at 49. I'm so sorry for your loss and do so appreciate your post . Regards. Kathy xx
My CA125 was within the normal range, I had been going to the GP for 8 months before I changed surgeries and began the treadmill. I don't think routine bloods are conclusive enough. I also have no cancer family history, and had no symptoms other than intermittent pain.
Thanks.... I agree that routine blood (CA125) are not conclusive for all, but for some they are and will always be. For example my wife's CA125 at diagnosis was in the thousands, logic suggests that months earlier it would have been lower. Had she been randomly tested say 6 months earlier, perhaps it would have been in the hundreds, and stage 2 instead of 3.
Of course it's the great unknown, but whilst agreeing the test (at the outset) isn't conclusive proof of OC, at the very least it gets them checked, and some of course will have OC unfortunately.
At the end of the day hopefully any 'testing' is better than no testing.
When I was diagnosed, my CA125 was in low 100’s. Stage 3C. Age 45. Had no symptoms until that dreadful weekend a little over a year ago. Still fighting while it continues to creep.
I'm sorry that your wife's OC wasn't detected earlier and given her a good chance of survival. This is what makes this such an insidious cancer in that by the time symptoms develop the cancer can be quite advanced.
Like you, I have wondered a lot lately about campaigning for regular ca125 testing. I know the test isn't definitive but it's certainly a valuable tool in detecting this heinous disease.
My consultant reckoned my tumour (which was huge, but contained, had taken about 3 months to grow) and as I was only 34 at the time I wouldn't have benefited from ca125 testing for the over 50's. A raised ca125 level though would have been picked up though if one had been routinely given at say smear tests?
I know OC is not a common cancer but then smear tests and mammograms don't pick up many cancers and I don't know but I can't imagine, the ca125 is very expensive. I just feel there's got to be something we can do to pick up this disease earlier and to give women like us who are unfortunate enough to get it a fighting chance.
I was very lucky that mine was stage 1 and I'm very very grateful to still be here at 63. It shows it can be beaten if detected in time. But I wish that for everyone on here too and obviously early detection is crucial.
The discussion about using the CA125 test for screening seems to keep cropping up but a solution still hasnt been decided upon.
I think one of the main issues with it is that it is not reliable in both directions. So it can have a false positive or a false negative. A false positive gives someone a few days/weeks of stress but hopefully ultimately would work out. A false negative is more worrying as it may mean a diagnosis is missed.
So then you have to decide whether to screen only with CA125 or whether you do ultrasound too. In which case why bother with the CA125 if you're doing an ultrasound?
I believe there have been trials to try to find a more reliable indicator but I don't know where the results are up to.
From a personal perspective I was 39 at diagnosis so wouldnt have benefitted from age related screening. Actually my age was used repeatedly as a reason to send me away without tests. I had all the symptoms of OC for several months and was visibly underweight. Even with a raised CA125 the GP remained confident it was nothing as I was 'too young'. The ultrasound got me at last moved onto the right track.
Saying that I understand why screening has an age cut off. It's about probability and I was unlucky. So I wouldnt reject age related screening as long as health professionals are also prepared to look at the person in front of them and consider all possibilities. A woman with unexplained abdominal pain, weight loss, ascites, etc is a red risk for cancer, possibly bowel, possibly guinocological. Both need to be considered in those circumstances regardless of age.
I hope that the discussions about screening for OC have a resolution in the near future. You are right that OC is a cancer where early detection makes a big difference.
I had symptoms for over a year before diagnosis. I was investigated as I had abdominal discomfort - my CA125 was raised so I had CT and ultrasound scans, but nothing was found. I was discharged with the reassurance that I had IBS. I knew there was something, but I couldn’t quite decide what it was. I found a lump in my abdomen a year later which proved to be ovarian cancer but on my omentum - Primary Peritoneal Cancer of Ovarian Origin to give it its full title.
I’ve had chemo and surgery, but my CA125 is rising again now - scan results on Wednesday. I asked for a meeting with my professor to try to establish if I could have been diagnosed sooner and as a result he has changed the protocol for women who present as I did - now the CA125 test will be repeated every three months and scans done if it is raised. Hopefully this will flag problems up sooner. In the mean time, I’m happy to be involved in any trials that I am eligible for - I’ve got nothing to lose and hopefully others may gain.
One of the problems too is that many women are unsure of the symptoms - these are often put down to age related issues especially the menopause or as Katfish says, being too young to get Ovarian Cancer?! Education and awareness is sadly lacking - I’m on a mission to tell women I know what to look for, but the sad fact is that often ovarian cancer shows no symptoms until late in its progression. I think the medical profession is as frustrated as we are about the difficulty in diagnosing it.
I’m sorry that your wife lost her fight with this monstrous disease and send my best wishes to you.
I was being screened with bloods and TV ultrasound annually because of a family history of OC and BC. I was diagnosed with only vague symptoms and ca225 at 175 at stage 3b. Unfortunately, they said it gave them further proof that screening is unreliable.
Hi I too think how could our cancer be caught earlier. Pre menopause ca125 isn’t reliable. There are other tests in development.
I was diagnosed at 3c after years of presenting with symptoms. I saw a gastroenterologist, a gynaecologist and back specialist for my symptoms. I was cleared of oc several times including 18months pre diagnosis. At diagnosis I was told that it had been there for years.
Education is the key if I knew that I was presenting all of the symptoms and how deadly oc was, I would have shouter harder and had a greater sense of urgency and not try and cope with my symptoms. I thought the pain, and heavy blood flow was part of preimenopause and a ladies lot as she aged. I was diagnosed at 48.
I am so sorry that your wife's life was ended from this awful disease and that she was unable to benefit from the available treatments. I was very fortunate in that, though large, my tumour was confined and stage 1 and I am very very lucky to have had nearly 30 years clear; testament to the efficacy of early (sheer luck on my case) treatment in this insidious disease. My consultant reckoned I'd had my tumour for about 3 months (really surprising given it's size) and I'd have been in big trouble in another 3 months.
I've been seriously thinking of campaigning for screening in the form of the ca125 test. I know it's not always definitive but it's a good indicator. To test 50+ women would obviously be of no use to younger women but I've wondered about it being a routine test at the time of a smear test. I know OC is relatively rare but it's consequences (largely due to late staging) are devastating. We have screening for cervical and breast cancer (and not many cancers are picked up) so why not this Cinderella of gynae cancers? It's not invasive and I imagine not too expensive?
Hi, so sorry to hear your wife passed away from o.c. I agree that some form of screening is needed especially as many women often don't present with symptoms until it is quite advanced. This was the sutuation for myself, I was 43 and stage 3c with only very subtle symptoms. Luckily my GP was vigilant and did bloods and scan straight away. My CA125 was raised and the ultrasound did show a mass. Const said I had probably had the cancer for about a year. If there was some form of screening I would have been picked up and treated sooner. Jo
This is precisely what the UKCTOCS trial was and is looking at: see details below
I attended one of the presentations and my understanding was that the results weren't adequate to support a full screening programme, BUT (and this is a big but) there were elements within the data over a longer period which looked promising and that's why it's been extended. If this were to prove the case, it would strengthen things considerably.
Thanks for continuing to stay in touch with us and take an interest and I hope you're doing as well as possible. xxx
There has been an incredibly large screening trial... its called UKCTOCS so if you google this there is a lot of information online...
My understanding is that using the algorithm with a yearly ca125 test and ultra sound scan did indeed lead to earlier diagnosis for some women. Sadly though in order to become part of a national screening tool there are other things to consider eg number of women having operations when there is no OvCa, changes to longer term survival rates etc etc- I don't I'm afraid have all the details but do know that the initial very promising results seemed to diminish. Im pretty sure though though that there is work still ongoing & understand it is possible to have the yearly test with algorithm privately in the UK
Thanks for all the responses.....I had said testing from age 50 as starting point, but clearly so many are getting OC earlier. I know that high grade serous is believed to originate (in many cases) from previous problems in the fallopian tubes. Which given that my wife had cysts there some 30 years before could add fuel to that belief.
I also read with interest (is that the right word?) the UKCTOCS details. If it is reporting that only 15 deaths per 10,000 screening on CA125 blood test....then I can understand any reluctance not to roll out a national screening, but only 15 out of 10,000 just seems really low to me. I am not sure how they arrived at that figure.
It would be interesting to know how many of those 10,000 actually went on to get OC. If for example it was say 30, then statistically 15 saved deaths out of 30 patients is a high percentage. So it isn't just how many are tested, it is also how many out of those tested actually got it anyway.....that is the only way to get the real result!
It has been proved that for some, once they have been diagnosed with OC, their CA125 is a good indicator of chemo working or otherwise. Obviously this isn't the case for all, but with OC nothing seems to make sense. I know our Onc once said to us that you could have identical twins both presenting the same symptoms, diagnosed the same staging etc, given the same treatment and one could live for ever and one could die the next day. In other words nobody really knows how someone is going to react to treatment, all we really have is the hope that for us it works...
I am left with the opinion that testing CA125 annually has got to find raised CA125 in people that have no symptoms....now if that turns out to be a false positive....great. If it doesn't then possibly for some/many further tests will go on to find something months earlier than would otherwise be the case.....logic then dictates that lives will be save and lives will be extended.
I am pretty sure that at some point in the future screening/testing will be a way of life....touch wood.
I think the 15 is attributable solely to the screening process... It may well be that with more study of the huge amount of data and also the additional 3 years of follow-up that more good will come from it. Its a pretty phenomenal amount of valuable information which has been collected already. I share your hopes that in the future better screening/testing will be available and think things are moving pretty quickly in better understanding the complexities of the diseases which cause OvCa. Very best wishes to you XXX
I'm so sorry to hear of your loss but, I think it's fantastic you've taken the time to connect on this site. So thank you! I am 45 and suspected I was unwell late 2016. Spent lots of time backwards and forwards to the GP, they thought I was potentially menopausal as a scan a year ago showed no issues. I was referred for a repeat scan in May 2017. There sat a complex cyst with a nasty solid centre on my right ovary. I felt ill and utterly shattered. I'd gained over a stone and my stomach was bloated like a little space hopper. My CA125 was 18 but, difficult to measure in a peri-menopausal woman. Thankfully I was seen by a gyne-oncologist who ordered immediate surgery and recommended a total hysterectomy. Within 4 weeks I'd had the surgery and with washings and tests on all the organs. I waited six weeks to find out I had a little cocktail of fybroids, endometriosis and stage 1a OC. I was very lucky indeed and it was my instincts that told me I was unwell. If I hadn't pushed as harder as I did, I reckon I would have been in a very different situation....THIS NEEDS TO CHANGE!
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