If a woman has symptoms suggestive of ovarian cancer, the first thing, of course, would be for her doctor to examine her, and the examination would include an examination of the abdomen, as well as an internal examination to see if there’s a mass, a lump, which can be felt in the pelvis. If after the examination there is a real suspicion of the possibility of ovarian cancer the next two straightforward tests would be an ultrasound scan, the same type of scan as performed in pregnancy, which can give a good picture of the size, shape and texture of the ovaries, and a blood test called CA125 which is raised in the majority of women, not all women, but in the majority of women who have ovarian cancer.

Those tests can either be, sometimes they’d be requested by the general practitioner, in other situations the GP would refer the patient into hospital and may be requested through the hospital. If the ultrasound scan and the CA125 suggest that there is an ovarian cancer present, sometimes no further investigations will be required, and in some instances it will be possible to go on to treatment just on the basis of the examination, the CA125 and the ultrasound. That treatment would normally be surgery in the first instance. In other situations, the CA125 and ultrasound may be uncertain or unclear, or more information may be needed before proceeding to treatment.

And then more sophisticated investigations may be performed, like a body scan, a CT scan, or an MR scan. They can give more information, not only about the condition of the ovaries, but also about the rest of the abdomen and pelvis, and give information about whether or not the cancer has spread outside the ovary.

Well, I was diagnosed with stage 1A ovarian cancer in April 2002, the day before my 54th birthday. And I’d been to my GP in the March. We were due to go on holiday and I’d been having just a dull ache down the lower left-hand side of my abdomen and I had some tenderness across the pubic bone area. And it wasn’t really troublesome but after 4 days I went to see my GP and he examined me and felt my tummy, looked a bit concerned and said he thought he could feel what could be a large ovarian cyst.

He asked if he could examine me vaginally and rectally to really, just to sort of confirm what he thought. He did do and he was still of the same opinion. He said that I should go straight to our local hospital, be prepared to stay in, they would want to do some tests. And he phoned them so they expected me, and he wrote a covering letter.

One of my work colleagues took me over to the hospital, tried to contact my husband who was in a meeting so she left a message. Had quite a long wait but I was examined, I was admitted and over the next couple of days I had x-rays, blood tests, ultra-sound scans and they confirmed that yes, there was a large cyst on the left ovary and that it would have to be operated on.

In October of 2000 I actually went to the doctor because I had found a large lump in my pelvic area and I realised that this was probably something more serious than I’d first imagined. The doctor was quite laid back about it, and said it was probably a fibroid or a cyst and then in due course I would need a hysterectomy. My initial reaction then was I don’t want a general anaesthetic. If I had known what the future was going to hold, that would have been the least of my worries.

Anyhow, the doctor referred me for an ultra-sound scan on my pelvic area, but I was told that this could probably take six to eight weeks. So discussing it with my husband and my family over that weekend we decided as a family that I should go private.

And on the Monday I rang the local private hospital and got a scan appointment for the Tuesday.

Because ovarian cancer doesn’t cause symptoms until it’s reached an advanced stage, a lot of hope has been attached to the possibility of screening for early detection of ovarian cancer, and work on this goes back 20-30 years. The rationale is that if a test can be used which will pick up the cancer when it’s confined to the ovary it may be possible to transform the outcome and to successfully treat the patient just by removing the ovaries and the womb without the need for chemotherapy or any other form of treatment. And the survival rates for stage 1 ovarian cancer, that is ovarian cancer which is genuinely confined to one or both ovaries, are over 90% at 5 years after treatment, whereas the overall survival rates for ovarian cancer at present are 30-40%. So if we could pick up the vast majority of women with ovarian cancer with stage 1 disease, it’s possible, but not absolutely guaranteed, it’s possible that we would transform the outcome for many, many thousands of women.

Some people will say when they hear that, ‘Fantastic. Why don’t we screen for ovarian cancer in everyone?’ And there are several reasons that we’re not introducing this yet as a national screening programme. One is that, although the tests can pick up ovarian cancer, they don’t pick it up in everyone. So they will pick up something in the range of 80 – 90% of women who have ovarian cancer; they’re not foolproof. The second and more important reason is that the tests are quite often abnormal even in women who do not have ovarian cancer. So there are false positive results associated with these tests.

Ovarian cancer is a relatively uncommon cancer, so that if we’re not careful, for every woman picked up with these tests who has cancer, we will end up operating on many, many other women who don’t have cancer, and some of those women will have complications, and in fact in some of the studies a small number of women who had false positive screening tests with CA125 or ultrasound have died from complications of surgery even though they did not have ovarian cancer. So we have to be very, very careful about that.

And the final reason for not offering screening immediately to everyone is that we haven’t yet proved that picking the cancer up with the screening test earlier actually saves lives. Now some people say ‘If you pick it up earlier surely it saves lives?’ Well the answer is not necessarily. We could be picking it up early, but we may not be picking it up early enough to prevent the cancer spreading and to make the disease curable by the treatment that’s available. So it’s too early to offer this sort of screening to every woman in the population.

What’s happening at present is that there is a very big randomised controlled trial in the UK, that is a trial in which half of the women involved are being screened and the other half of the women are not being screened. The study will take 10 years to complete. It will be complete in around about 2010 – 2011. It’s already 2-3 years’ progress has been made. At the end of that study all of the information needed will be available for the Department of Health and the government to make a decision about whether or not to introduce ovarian cancer screening alongside cervical and breast cancer screening. And the sort of information that’s needed is’ does ovarian cancer screening save lives? If it does save lives, how much does it cost to do that? And what is the down side of screening’ how much anxiety does screening cause, how many false positives are there, how many unnecessary operations result from the false positives, and how many women have serious complications as a result of that unnecessary surgery? So there’s quite a fine balance to be reached here in, with the issue of screening. That big study is called the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS).

The UKCTOCS trial is designed so that recruitment is over 3 years and it’s recruitment of 200,000 women, and 160,000 of them are recruited as of now in mid-2004. During the next year the remaining 40,000 will be recruited, so by 2005 all of the women will be participating in the study. The screening will then continue till 2010, and by 2011 or 12 we will have the mortality data, so we’ll be able to see for the first time whether ovarian cancer screening really does save lives.