My Ovacome


Hi Everyone,

Does anyone feel if they had done the C125 test without symtoms it would have caught the O.C earlier?, I just wish so much I would have done that they call it the silent killer so surley you must have O.C before you ever have any symptoms?, and that way you would catch it much earlier stage 1, I dont think doctors will do it as they only go by symptoms, and they only use it as aid to dectect the cancer, for me 50 and up would be the right time as it affects women once they go throught the menopause.

from sarah23

14 Replies

Hi Sarah,

But I was 44 when I was diagnosed last year so 50 would not have helped me...I have heard the reason they do not screen via CA125 is that 99 out of every 100 women who had a raised CA125, would do so for other reasons and so it is not effective. There is a new initiative which sends women for their test on the signs, but I agree it is too late by then. I think the bottom line is much more research needs putting into ovarian cancer treatments and early detection. I would urge anybody who finds themself in London near Mornington Crescent Underground to pop in to Ovarian Cancer Action 8-12 Camden High Street. They are one of the biggest funders of oc research. I bought several of their oc awareness badges (the teal symbol Anna has on her Avatar) to give to other neighbours who I know have been personally affected (mothers, friends, sister-in-law's) not just by knowing me and we had a great chat and made me welcome. Prof Iain McNeish (my second opinion boffin) had been there earlier that day.

Please Sarah, I hope you are not beating yourself up and doing 'what if's'. We all are where we are and all we can do is find a path forward.

Love Lizzie



I was 40 when I first started getting symptoms so agree that 50 would also have been too late for me as well.


Hi Sarah I had a full body scan in Feb 2011 and all ok (I was in remission from NHL) I went back 6months later and had a 2nd full body scan and yea there it was stage 3b oc. No sympyoms only 1 or 2 twinges of what felt like ovulation pains. I am post menopause but had never had any probs went thru my whole life had 3 kids and didnt take anything for menopause.

Hi Lizzie do you think a routine blood test (CA125) would be a good early detector? As you say there are other things that can raise it. But it does hit without warning and we need to find a cure i pray so Love and (((Healing hugs)))) Lynn XXXXX


I have just lost my mother to ovarian cancer she was diagnosed 2and a half years ago at stage 3c she had no symptoms until about a month before diagnosis and the only problem she had was diarrhoea . I feel all women should have a yearly ca125 from the age of 40 this long term would have millions that the nhs spend on surgery and chemo and also give patients a better chance of catching the disease early. I know in her last few days she said she felt cheated , she was 64 when she passed away last Friday . RIP my wonderful mother ...


So sorry for your loss.

My mum passed away 2 years ago, after a 5 year fight with OC (at the time they said she had 2 months at most ) - since then my sisters and I all have a CA125 done at our local doctors at the beginning of each year. There is so much debate over whether this can be hereditary or not, insisting you have one based on that fact that it could be - seems to sway some doctors into booking a yearly one for you.

Sending you strength and peace for the coming months .


Thanks Lesley , myself and my sister have asked for ca125 she managed to get one and my gp sent me for an ultrasound but I will be asking for yearly checks from now on . Sorry you lost your mother too x


Hi everyone,

I feel having the C125 once a year would not be enough to pick it up, it has limited capacity for detecting early stage O.C you would have to be having the test every three months or more, and that it only ever picked up in the later stages because there are no symptom early on or if you are having symptoms they are all types, that are not anything to do with O.C, or so the doctors lead you to belive they only than start to press on other organs and its always stage 3 and 4 by that time.



Maybe a ca125 alongside a yearly ultrasound scan is a better option?


I went to my doctor with what I now know were clear symptoms. I was not listened to and fobbed off for 12 months ....... despite persisting and telling a succession of doctors that I knew something was seriously wrong . By the time I was diagnosed I was already stage 4 with a ca 125 of 3,600 and 7.5 litres of fluid in me, if you add together both the pleural and the abdominal acites. I had numerous blood tests for everything under the sun ........ all of which of course came up normal ................. but was never given the blood test that would have shown immediately and cheaply what the problem was.


Dear Suzy

I am one of the Ovacome support Line nurses.

I am really sorry to hear about your experience. Anyone who has symptoms which could suggest ovarian cancer should be offered a Ca125 Blood test by their GP. Sometimes people find it helpful to go and speak to the practice manager to make sure doctors are more aware of what to do in this situation. Unfortunately of course it won't change your situation but it will make them more aware if anyone has similar symptoms.

In general Ca125 are not offered to people who do not have symptoms as only 50% of people with early stage ovarian cancer have a raised Ca125 and as has been pointed out it can be raised for a lot of other reasons as well. As we do not yet know whether screening of the general post menopausal population makes a difference ( using either ca125 or transvaginal ultrasound), a trial of 200,000 women has taken place around the UK. Results are not yet available but if they show that screening makes a difference this may lead to an introduction of a screening programme. There has also been a similar study for those who come from a family where there is a significantly higher risk of developing the disease and the results of this study will be available in the next couple of years. If there are any further queries do please phone the Ovacome office.



Hi Sarah,

The last thing is to scare you but we can get OC at any age if we are at high risk.

Yes, indeed I know now that had I been given regular CA 125 blood tests my cancer would have been caught at an early stage. I was diagnosed at a close stage 2c and my CA125 level was in the thousands so for me the CA 125 would have given me an earlier diagnosis.

The only symptom I had and the only symptom I went to the GP with was bleeding after intercourse, it was enough to send us both to the shower, it only happened three times and there was a slight sensitivity as though hubby was hitting something (he was, the tumour) but obviously we did not know that at the time.

My mother died of OV 37 years ago (nothing they could do in those days apart from operate, this was before chemotherapy). However, no one seemed alarmed that I felt as though I was at high risk of getting OC too. Had they taken me seriously and refered me to genetics a few years earlier when I asked about it, I may have prevented OC, I even asked to pay private for the hysterectomy as a prevention. No one would listen. Then after my diagnosis everyone suddenly suggested I was referred to genetics and I do have the faulty braca one gene which was putting me at a 50% risk of OC in a life time. What has shocked me is I am also at a 80% risk of breast cancer now, So I am opting for a double mastectomy hopefully this year. My next consultation is next month to discuss my options but as far as I`m concerned I have no choice if my aim is prevention.

I agree with Lizzie its too late for us now so there is no use beating ourselves up and think what IF. However, now I know I have the faulty gene I may be able to save my daughters.

Lizzie also has a point my luvie the CA125 test is only a marker it does not rule out malignancy and it cannot be used to diagnose the OC. If they offered it to us as a type of deterant maybe more people could lose their life rather than save it.

We may well know now that for us it would have caught it earlier but pre-cancer there would be no way of knowing this. I think it could worry people far more than reasure them. But I do understand exactly where you are coming from and why you feel as you do, its crossed my mind many a time too.

Take care with love from Tina xxx


Not sure if this helps but my oncologist told me they don`t like to do too many scans on us because it can actually cause cancer or re-ocurrance, hearing that made me feel as though we are well and truly stuffed in a way.

I certainly don`t think even 6 month screening would detect it early enough, Cancerous cells can start to accumulate quickly, if this happens within days or weeks after the screening takes place, then the screening can`t help as we would expect it to because by the time the next one is due it could be too late for us anyway.

I am aware how many mammograms save women with breast cancer even though screening is only usually offered 3 yearly after the age of 50 however, it can`t possibly help everyone, it just has to be better than nothing.

My couson had a mammogram which diagnosed the breast cancer she had no idea of having, basically that screening did save her life but had the screening taken place at another time it may not have made any difference. All we can do is do our best with what life challenges us with and hope by the time our children, grandchildren reach the risk age something will have developed to cure rather than just treat. But that said prevention is better than treat or cure, not sure how we could possibly provent these things.

Its like this, if cancer doesn`t kill us - something else will, something we can never escape from is death. We would just prefere it to be when we are old and grey rather than now.


There will always be blips and for me screening wouldn't have shown anything so I think I agree with cancer would have gone undiagnosed.

I had 3 CA125's (highest I ever got was only 400) and ultrasound and MRI - and none of them diagnosed OC. The scans suggested a cyst on my ovary but I guess cause the marker wasn't that high, they were looking for something else. Eventually my GynOnc suggested a laproscopy and found borderline 3c which was confirmed malignant after the surgery.

I'm sure better screening tools are being developed and researched and hope one day soon (for the sake of our daughters) they will be routinely used.


There are so any theories as to whether the CA 125 is an 'efficient' way of detecting ovarian cancer, but I seriously think if GP's did one when a patient presents with symptoms, it could very well help.

I had a well woman check up in March 2006, kidneys and ovaries scanned, I'd already had a hysterectomy when I was about 40. I also a breast ultra sound at the same check up. . Nothing all clear. In June I went to the DR, a female and privately, with swollen tummy and diarrhoea, IBS was diagnosed. Things got worse, but I thought nothing of it and then because I was due to have a small gynie op and I'd had kidney surgery, they insisted on checking the kidneys through an ultra sound just to check there were OK. This was end Sept 2006 and this is when they found the tumour.

So really what I am saying is a yearly check up I still don't think would help, Mine was all clear in March but by June symptoms were there and due to a GP who didn't detect it I was left with late stage o/c and am now into my 5th year of fighting this wretched disease.

Love Anna xx


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