Why couldn't this have been done years ago?

[CallmeMum]

Hi ladies I saw this on BBC news today it's about giving high risk Ladies a CA125

bbc.co.uk/news/health-39103629

[Lyndy]

I remember talking to my GP years ago about my grandmothers OC..I was fobbed off...which was a pity because was BRCA 1 and stage 4 at dx. They could have saved me all that.......😔

[CallmeMum in reply to Lyndy]

They could have saved a lot of people all the hassles they have now, it just shows that there's no need to pick it up at stage 3/4 if Drs listened rather than getting fobbed off with IBS! Xx

[Rachael47]

I've had numerous CA125 tests over the years, never shown anything. It is not infallible but a good starting point.

[koffeekat99]

The screening wouldn't have helped me as I wouldn't qualify for it. I have a family history of BC and I was under 40 at diagnosis of OC, but tested negative for BRCA genes. The majority of people test negative for the BRCA genes. In which case who would qualify for the screening? Prior to diagnosis I was not deemed to be 'high risk'.

The article also goes on to highlight other issues with the use of the CA125 test for screening. There's not enough evidence currently that it would save lives as it's not reliable enough. That raises the issue of whether it would be problematic for people with false negatives. False positives may be stressful but further tests could be done. It's the false negatives for whom the test would be dangerous.

If the issue of the false negatives cannot be resolved then it would be very difficult to use it as a screening test. Anyone with raised CA125 would then go on to have scans. But anyone with no raised CA125 would presumably still go on to have scans in case the test was incorrect. In which case the test hasn't been a very good screening test.

I believe that's the main reason it hasn't been used in the past. It's only used as an indicative test once you become symptomatic and seemingly also for some people to monitor for recurrence. Again, it's not that useful for me as I have residual disease, so we don't monitor my CA125 anyway.

Part of the problem I believe is that it's not fully known why the test is unreliable. If it was known then perhaps it could be used for screening. As it stands I can see why it isn't used for screening.

Saying all that I can understand why if you are BRCA gene positive you would want easy access to the test. But I think it would need to be explained to people that the test is not reliable and people still need to keep an eye out for symptoms.

In my case, and I think this is pretty common, being given the CA125 test and an ultrasound scan the first time I presented with symptoms would have cut out several months of faffing about. Like so many others I was told it was IBS and was only tested for problems with my digestive system. I believe that any female presenting with unexplained abdominal symptoms should automatically be referred for the digestive and the reproductive system tests. This is preferable to having to do a diary of symptoms for several months and present it to the GP to show that my symptoms corresponded with ovulation and having to prove it wasn't IBS. Education and attitude of GPs is something that is known already needs to change and doesn't require any further research. So I'd like to see a massive change there.

[HogwartsDK in reply to koffeekat99]

Have to say I agree with Katfish on this one! I was diagnosed with OC and my CA125 was always within the normal range, I have subsequently tested BRCA negative so wouldn't have been high risk outside of my sister having BC. I was 45 when diagnosed. I think that in line with what Katfish is saying Education at a GP level is what is required first and foremost. I am an example of where this works as I did not have had any of the more pronounced symptoms and was not high risk but my GP listened to me and did a physical exam where he felt the mass in my abdomen! I was diagnosed at stage 1!

Sometimes we tend to skip over the simpler strategies to facilitate early diagnosis and look to science to provide screening options before the science has actually proven their worth. I know that Ovacare here in Ireland are working very hard to get GPs to take the generalised symptoms that often characterise OC more seriously therefore facilitating earlier diagnosis and better prognosis. In the same breath it should not be an either or scenario and both tools are required in order to ensure that both the scientific and medical community can develop solutions to help those of us that are diagnosed with OC and our families.

Dx

[minard]

If you are diagnosed or are interested in BRCA issues generally, Caroline Presho is involved with a group called Brca Umbrella. I joined this online forum at an early stage of my OC treatment. Like all of us here on Ovacome, there are some very knowledgeable and helpful people posting there x

[Lyndy in reply to minard]

Have you a link please Minard?

[minard in reply to Lyndy]

Sorry - here's the link - brcaumbrella.ning.com/

Caroline

[Seavccg]

My sister recently diagnosed. My daughter had Germ cell OC in 2002? BRCA gene or horrible coincidence? My sister will ask to be tested then we will take it from there. There are only 5 first line females in my immediate family.and 2 of them (my daughter and my sister) have been diagnosed with OC.

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[85live4ev]

Hi Callmemum, yes I have to agree with this. I went to the GP for years saying all the same symptoms of oc even explaning my mum, aunty & cousin died of oc my sister & 2 cousins had bc but I was never offered a ca 125 it took them almost 5 years to find it!! All because the GP were useless. I was given 6 months to live if I had a ca125 it would of picked it up a lot earlier. I know this won't help everyone but it works well for me.

The GPs in my old surgery didn't even know what a ca125 was. I am now in a different surgery & so far the GPs are more informed & at least they know more about oc than the old surgery did & amazingly they listen to me!!! Thank you for posting this. Take care Cindyxx

[Boot1947]

Whether the CA125 is a good marker or not, this has at least raised awareness that there IS a blood test available, which I, for one, didn't know when I first presented with symptoms. After much to-ing and fro-ing, my levels came back as 3,900, which was useful to know! But my knowledge of BRCA was also pretty much non-existent before I started this journey. Perhaps it's a case of 'every little helps'. Deb x