We need ovarian cancer screening for high-risk women - right now!
Eight years ago, I had a double mastectomy when I was just 35 years old. Four years later, I had my ovaries and fallopian tubes removed. Yet I hadn't had a cancer diagnosis, or even signs or symptoms. This was purely an act of prevention.
Extreme? Absolutely not. My personal risk of cancer was so high that having these operations was the only way to reduce my risk to a normal level. When you've watched your family being ravaged by cancer, and find out it's been going on for generations, it feels like a very rational move.
I carry a BRCA gene mutation, which means I had up to a 60% chance of developing ovarian cancer, compared to just 2% for the general population. My risk is now that of a non-mutation carrier.
I've had these operations because, currently, there is no regular screening programme for women at high risk of ovarian cancer available on the NHS. Once you know you have the gene mutation, you are faced with difficult choices. There is a breast screening programme for high-risk women over 30, which is great, and introducing regular ovarian screening might not have stopped me having my operations, but it would have bought me time, reassurance and choices.
We all carry BRCA1/2 genes and their function is tumour suppression. One in 800 of the general population (or in the case of the Ashkenazi Jewish population, one in 40) carry a mutation and this means that they are at higher risk of developing a number of cancers. BRCA mutations are often mistakenly thought of as something that only affects women, but men are also at risk of breast, prostate and pancreatic cancers if they carry a mutation. They can also pass the mutation onto their children.
Ovarian screening, or should I say the lack of it, is a touchy subject for the high-risk community. Those who haven't had risk-reducing surgery have to rely on knowing their bodies inside out and being aware of even slight changes. Unfortunately, that is easier said than done when it comes to the symptoms of ovarian cancer. The symptoms are so vague that they can easily be mistaken for something like Irritable Bowel Syndrome (IBS) or pre-menstrual problems. Ovarian cancer is, thankfully, one of the rarer cancers, but this means GPs will see very few cases of it during their career, so they will often send women away with a reassuring nod that what they are experiencing is something else entirely and nothing to worry about. This is probably one of the reasons why so many women are diagnosed with ovarian cancer at such a late stage, when the options for treatment are limited and survival rates are low. Only 12.5% of women diagnosed at the most advanced stages will survive more than five years.
Over the last 10 years, University College London, co-funded by Cancer Research UK, the UK Department of Health and The Eve Appeal, has carried out the world's largest screening trial of women at high risk of developing ovarian cancer. Women like me were offered a 4-monthly blood test to check CA125 levels - CA125 is a protein that if found in high levels can indicate that a tumour is present - and an annual transvaginal ultrasound. Being part of this screening programme made me feel safe, and that I didn't have to rely on my instincts alone when it came to detecting ovarian cancer.
The results of the UK FOCSS were recently published in the Journal of Clinical Oncology. Over 4000 women with a family history of ovarian cancer, who at that point hadn't opted for risk reducing surgery, took part in the research. During the screening phase and in the year after their last test, 19 women were diagnosed with ovarian cancer although none had any symptoms. The screening was estimated to be able to pick up nine out of every 10 ovarian cancers.
Dr Adam Rosenthal, Clinical Lead on the trial says "The screening appears to be very effective at detecting ovarian cancer before it causes symptoms. It is not going to prevent a woman from developing ovarian cancer - currently the only way to prevent it is to remove the ovaries and fallopian tubes - but it does detect it at an earlier stage, when surgery to remove it is easier. Importantly, this would be expected to improve prognosis."
So, what does this mean to us, the mutation carriers and the members of the high risk community? It could buy us the time to decide what we want to do - the chance to have our families at a slightly less rushed pace, knowing that if ovarian cancer is found, it will hopefully be at an earlier stage and treatment may be more successful.
These results give me hope that the NHS will see fit to fund regular screening for all high-risk women, so that in future, my daughters will have more choices and won't have to rush through decisions.
If you'd like to watch and share a short video which explains more about the research findings please click here
P.S. Remember that March is Ovarian Cancer Awareness Month where The Eve Appeal will be raising awareness of the key signs and symptoms of ovarian cancer throughout the month. They'll also be asking everyone to dust off the cake mixers and bake their favourite cakes for their annual campaign, Make Time for Tea, to help raise vital funds for the charities pioneering research into early detection and prevention of ovarian cancer. To find out more please visit www.eveappeal.org.uk/tea