Avoiding late diagnosis of ovarian cancer

The Eve Appeal are delighted to announce that the UCLH Cancer Collaborative has today launched the first pilot project of an NHS ovarian cancer surveillance service for women who carry a faulty BRCA gene and have chosen not to have their ovaries and fallopian tubes removed.

The pilot, known as the ALDO project (Avoiding Late Diagnosis in Ovarian Cancer), aims to recruit 2,000 women aged over 35 from across England and will use Abcodia’s ROCA© Test as part of an NHS service to detect ovarian cancer amongst BRCA-carriers before they have any symptoms. The ROCA Test uses an algorithm to assess changes in the level of the blood chemical CA125, which typically rises in ovarian cancer. Participants will have the ROCA Test every four months.

This is the first time that this technology has been piloted as an NHS service and heralds a significant step towards meeting recommendations in the National Cancer Strategy to improve early diagnosis. Caroline Presho, who carries a faulty BRCA gene mutation and is Director of BRCA Umbrella, tells us why this research is so important and the impact this could have on women in the future.

Caroline Presho - A personal perspective

“Ovarian cancer terrifies me – it’s known as the silent killer because all too often women aren’t aware that they have developed it until it has progressed to an advanced stage and the symptoms are life changing. Every year, more than 7,000 women are diagnosed with the disease and over 4,000 will die. Only 35 per cent of these women will live for 10 or more years after diagnosis, largely due to late detection.

Women in the general population have a 2% lifetime risk of developing ovarian cancer, but someone like me, who carries a fault in one of my BRCA genes has up to a 60% lifetime risk.  This, coupled with the fact that there is currently no national NHS screening programme, means that women in my position, with either a significant family history of ovarian cancer or an identified genetic fault, have to rely on knowing our bodies well enough to decide whether the vague symptoms that we are experiencing are of something sinister or an innocent alternative.

Bloating, frequency of urination and feeling full up quickly are just a few of the symptoms of ovarian cancer……but how many other conditions present with these?  As women, we have probably experienced these a thousand times and just assumed that they are nothing to worry about.  Unfortunately, when I experienced these symptoms, they caused blind panic…..was it my IBS or ovarian cancer?  I didn’t feel able to live with this perpetual fear  and faced a difficult decision,  either they wait and see what happens or remove both my ovaries and fallopian tubes.   Removing my healthy body parts doesn’t guarantee that I won’t develop cancer but this was the best option in the absence of a screening programme.  Whilst this is the most effective way of preventing ovarian cancer, it has had far-reaching effects for me including premature menopause.

Today’s launch of the ALDO project is like music to my ears. ALDO stands for Avoiding Late Diagnosis of Ovarian Cancer and it is the first pilot project of an NHS ovarian cancer surveillance service for women who carry a faulty BRCA gene and have chosen not to have their ovaries and fallopian tubes removed.   The pilot will offer women with identified BRCA gene faults in the London and Manchester areas the opportunity to take part in a year long surveillance programme.  This will involve 4 monthly blood tests, taken at your own GP’s surgery and posted back to the University College London laboratories in a pre-paid envelope supplied with the blood collection pack.  The blood will be tested for CA-125, a protein which often increases in cases of ovarian cancer, and then analysed using the ROCA test which will calculate your risk.  Results will be sent back to you after 7 days and depending on these, women will be classified as either Normal, Mildly Elevated, Moderately Elevated of Significantly Elevated.  If necessary, women will be offered further testing with a further blood test or a transvaginal ultrasound.

“The ALDO screening programme will offer women, like my sister, the choice to have surveillance and put the difficult decisions she will have to face off until she has finished her family.  This is a step in the right direction for future generations and gives me hope for my daughters if they find themselves having to consider their futures with a BRCA gene fault.  I sincerely hope that the NHS chose to carry the pilot forward and give women in the high risk communities an option other than risk-reducing surgery.”

If you would like to find out more about the ALDO project, and whether you’re eligible to take part, please visit their dedicated website.