The least welcome Ashkenazi heirloom
THIS IS ovarian cancer awareness month — but how aware of this disease are we, really? Many women continue to confuse it with cervical cancer and think that, because their smear test was clear, they do not need to worry about ovarian cancer either.
“Lots of women think a cervical smear it can detect ovarian cancer but it will not,” says Allyson Kaye, founder and chair of Ovarian Cancer Action. “Ovarian cancer is much more lethal and Ashkenazi women in particular should have it on their radar.”
THE MAIN SYMPTOMS OF OVARIAN CANCER ARE:
Persistent stomach pain Persistent bloating, continually feeling as if you are pregnant, increase in stomach size
Difficulty eating or feeling full quickly Needing to urinate more frequently
Look out for these symptoms and do not be embarrassed to go to your GP.
Before you do, you may wish to fill out a symptoms diary, a concept devised by the charity and which has been adopted by organisations worldwide. A paper version can be downloaded from ovarian.org.uk or use Ovarian Cancer Action’s new app. (Simply enter the charity’s name in the appstore; the app is free, covers additional symptoms and allows you to add your own.)
“The diary will give you the confidence to go to your GP and talk with authority about something being wrong,” says Kaye. “Since starting the charity, it has changed the way I talk to doctors. I think I always expected them to be a magician but now I know that scientific people love evidence.”
It is important to catch ovarian cancer as soon as possible. At an early stage it is very treatable but at a later stage it is a killer — we are talking a 90 per cent chance of survival against a 22 per cent chance. “Get to it early before it spreads,” says Kaye.
Kaye’s understanding of the scientific background to ovarian cancer began when her own mother died of the disease, aged 48 and her father set up a think tank, which Kaye ran. She started Ovarian Cancer Action 12 years ago, wanting to share her knowledge of the symptoms with women. The charity now runs probably the biggest ovarian cancer research centre in Europe.
One of the key research findings in the past few years has been the role of BRCA gene mutations. If you are Ashkenazi, your risk of developing ovarian cancer may be increased by an inherited gene — BRCA 1 and 2 (Ashkenazim are 10 times as likely as the general population to be BRCA carriers). But many in the community are reluctant to talk openly about genetic risks. “People are frightened of labelling their families,” says Kaye.
The gene mutation can be inherited on the father’s side; it does not have to be the mother’s. Nor need the cancers be gynaecological. A succession of different cancers in your family history might “wave a flag”, as Kaye puts it. The Ovarian Cancer Action website has an online tool to help you assess your risk. Ask relatives for as much detail as they can give you about their cancers, to help use the tool effectively.
Celebrity cases have helped spread the word. Angelina Jolie opted for a double mastectomy and removal of her ovaries and fallopian tubes after her mother died of ovarian cancer and she found she had the BRCA gene, while Pierce Brosnan lost both his wife and his daughter to the disease.
Jolie’s surgery proves it is possible to
Allyson Kaye evade one’s genetic inheritance but Kaye says exciting research is in the pipeline to provide protective options that will be less harsh.
It is already possible, if you have not yet had children and have been identified as a BRCA carrier, to choose which eggs to fertilise and so avoid giving birth to a child with the BRCA mutation. “We now know at least 17 per cent of ovarian cancers are accounted for by BRCA 1 and 2,” says Kaye. “We think it may be as high as one in five. If we could stop all those people getting cancer, we could save 1,000 lives a year. But it is up to us to go to the doctor about it.” Ovarian Cancer Action researchers at Oxford University have found two proteins in the fallopian tube that may lead to the development of a national screening tool. Around £1 million is needed to fund this research further. Breast cancer currently receives six times as much funding as ovarian cancer. “Research shows that if you fund a disease it correlates with improvement in survival,” says Kaye.
At the moment, lung and pancreatic cancer are the only ones with a worse mortality rate than ovarian, although things are improving. “Ovarian cancer really was a death sentence when my mum got it. One and a half years after diagnosis, you’d be lucky to still be alive. Now many women are alive after 10 years. They may have had a recurrence but they’re still alive. For women who do discover they have ovarian cancer, “treatment is mostly successful,” says Kaye “but over time women become resistant to chemotherapy. We do a lot of work in keeping away that resistance. “Ovarian cancer tends to come back but there are lots of lines of treatment, so what we’re trying to do now is fund research to create many lines of treatment.” Promising new areas are immunotherapy — a tablet or vaccine to take after chemo, to make our own immune system kill the cancer — and microbiome research (examining the possible cancer-promoting effect of substances in the gut). “When ovarian cancer runs through a family, it’s heart-rending,” says Kaye.
“So if, as a community, we can do anything about stopping the next generation from suffering, it will be a great thing. “I’d like the community to take notice of this, because we could save many lives and help the next generation to sidestep cancer.”
Help the next generation side-step cancer’