Feeling frightened

[Nobodyschild]

I have been to my g p and had blood 125 come back normal,I have all the markers for ov cancer,back pain frequent loo visits especially at night,vague tummy pain,I had a hysterectomy 1989,am 68 yrs old,sleep at the drop of a hat,and only when pressure is placed on my side do I have pain,no other times.my gp today referred me for an emergency app at hospital and also scan,I don't know what to think as blood was normal,can anyone help?

[Whippit]

Dear Nobody'sChild

It's a horrible time waiting for a scan if you are worried about symptoms. It's unfortunate that CA125 cannot be relied on as an accurate marker as a one-off test though it can be an indication to take into account. What is good news is your GP has taken all this seriously and is being very thorough in referring you for an emergency for a scan. I hope you don't have to wait too long and that you get reassuring news from this. It seems you're in good hands.

If I could offer any advice it's not to spend too much time looking up stuff on Google. Much better to leave the diagnosis to the professionals and do what you can to distract yourself and keep your mind off worrying. Not easy I know!

xx love Annie

[Hidden in reply to Whippit]

hi Annie.read your reply to Nobodys Child with interest about the CA125 not being a reliable test and that she has markers for OC

[Whippit in reply to Hidden]

There's been a huge trial called UKCTOCS that looked at CA125 (alongside TVS) as a screening measure for Ovarian Cancer but according to Professor Ian Jacobs, who was responsible for the trial, it would only be a reliable indicator if women were tested regularly over a number of years in order to find each woman's 'norm' and then track any trends over time

As I understand it, some women with advanced ovarian cancer have a CA125 within the normal range. Equally women who do not have ovarian cancer can present with a raised figure due to other conditions such as gastroenteritis. A false-positive result or a false-negative result is not uncommon and makes CA125 an unreliable indicator used on its own.

These events run by Ovacome and Target Ovarian Cancer are so helpful. I try to attend what I can as I find it so much more interesting than thinking of ovarian cancer as 'my disease'.

Hope this is helpful and/or explains my comment to Nobody's Child. xx

[Hidden in reply to Whippit]

my first ca125 was around 179 which is not excessively high and came down to 37 over a period of a year ,yet had different results from a hospital for the same period of 15 and 9.i have heard taht it can be affected by other conditions and that it could also be related to peritonial problems.

[TinaB1]

About 10-20% of Ovarian patients don't have a raised level of the CA125 protein at diagnosis. The normal range is 0-35 but mine was 15 at diagnosis and 9 after treatment. I don't have this test to track my disease as it won't show if anything is happening. Your symptoms can be due to other conditions so don't get the idea that it's Ovarian as doctors generally see only one Ovarian case every 5 years. I think it's very good you're having tests just to make sure. If you had your Ovaries left in, you can still get Ovarian but any abnormalities are much more likely to from benign conditions/growths. I know it's a worrying time, but I feel the time to start worrying is when a disease is diagnosed. Easy for me to say, I know.xx

[Hidden]

i also read that doctors arent fully "up" on ovarian cancer as they only see cases once in a few years and when tests come back as "normal"they don't investigate any other possible cause

[TinaB1 in reply to Hidden]

Well, Nobody's Child has so things in this area are improving. Xx

[Hidden in reply to TinaB1]

Hope your scans go OK.must have have a good doctor to refer you straightaway.

[Nobodyschild in reply to Hidden]

Wonderful doctor,thank you for thinking about me,will let you all know as soon as I hear anything.best wishes and lots of love to all who are suffering or are waiting like me for answers xx

[Di16]

Waiting & wondering are always difficult, but at least you are being taken seriously & your concerns are being checked out. As others have said, CA125 is not always a good marker. I have advanced ovarian cancer, & I was told at my appointment this week that my CA125 has gone up from 7 to 8, well within normal, & the doctor has agreed there's no point in testing it every time.

Di

[TinaB1 in reply to Di16]

Yes, and if doctors had to look into trends over time in your case, they wouldn't be able to predict what your disease was doing. I was wondering if you have regular scans instead? Xx

[Di16 in reply to TinaB1]

They can't predict anything from ca125, as it is still so low. My oc recurred for the 4th time over two years ago, & is still there, despite a trial on Arimidex & then two courses of chemo which both caused a bit of shrinkage. I have now just started taking another hormone tablet. Because of all this, they are naturally doing regular scans. But it has always been said that in my case, ca125 is not a marker.

Di

[Di16 in reply to Di16]

Before this last two years, my gynae onc was also not doing ca125 very often even though I was not having regular scans, because it was not needed for me.

Di

[Nobodyschild]

Thank you everyone xx