Nine in ten women do not know all the symptoms of ovarian cancer, with almost a third unable to name any, according to new research. Patsy Westcott reports on how new research is bringing hope of earlier diagnosis and treatment to combat what has long been a feared disease.
Today more than 20 women will sit in a doctor’s room and hear the frightening diagnosis, “You have ovarian cancer.” Frightening because ovarian cancer is one of the hardest cancers to detect and treat successfully. The telltale signs are vague and usually only appear at a late stage, and as yet there’s no accurate screening test.
However, thanks to campaigns to raise awareness among medics and patients, one in five of the 7,000 women diagnosed each year are now picked up early. This is vital, as early diagnosis means 90 per cent survive for five years or more. And with better understanding of how OC develops and new treatment options, the future is starting to look brighter.
Symptoms of ovarian cancer
See your GP if you experience:
- Bloating persistently – ie, it doesn’t come and go.
- Trouble eating and feeling full quickly.
- Abdominal AND pelvic pain most days.
- Needing to wee more urgently or more often than usual.
Ovacome is the UK’s ovarian cancer support network; it has a symptom tracker at beatonline.info
Why is ovarian cancer hard to diagnose?
A key reason is that
symptoms are non-specific and easily put down to more common, less
serious problems. And even GPs aren’t always that symptom savvy.
2012 survey found that more than a third of women visited their GP
three or more times before being diagnosed. Perhaps not surprising when,
although it’s the second most common gynaecological cancer, Professor
Kehoe points out, “The average GP will only see perhaps one case every
three to five years.”
Should you be screened for ovarian cancer?
The risk of OC is higher if
you’ve inherited a mutation in the BRCA1 or BRCA2 genes, from either
parent. Discuss genetic counselling and testing with your doctor if…
- You had breast cancer below age 50
- You had cancer in both breasts
- Several family members have had breast and/or ovarian cancers
- Male relatives have had breast cancer
- You’re of Ashkenazi Jewish origin
blood test to check levels of a protein, CA125, that is raised in OC,
is available on the NHS. But other less serious problems (fibroids,
non-ovarian cancers) can also raise levels, and not all women with OC
have high CA125 levels, so talk to your doctor.
What alters the odds of getting ovarian cancer?
While you can’t alter some risk factors (being 50+ raises your risk), some you can. Talk to your doctor if you’re concerned.
- Genes Mutations: in BRCA (1 and 2) genes account for 10-15% of OCs.
history: Early periods, never having been pregnant, first child after
30, menopause after 50, never taking the pill and infertility.
Combined HRT for 5+ years increases risk (without hysterectomy); 10+
years oestrogen-only HRT increases risk (with hysterectomy).
- OBESITY: 80% higher risk for women aged 50-70 who’ve not taken HRT.
- The Pill: Taking it for 5+ years halves the risk of OC.
- Pregnancy & breastfeeding: First full-term pregnancy before age 26;reduces the number of times you ovulate.
of ovaries and fallopian tubes: prophylactic bilateral
salpingo-oophorectomy. Women with BRCA1 mutations can benefit from
having ovaries removed before age 35. Hysterectomy/tubal ligation
(having your fallopian tubes tied) also reduces risk.
Ovarian cancer research discoveries
One of the biggest game changers is the realisation that OC has many different faces – there are at least 20, possibly more – types of the disease. Scientists have also made the startling discovery that the most common and serious type – medically known as high-grade serous OC, which mainly affects women aged 55-65 – doesn’t start in the ovaries but in the frond-like ends of the fallopian tubes (which eggs travel down to the uterus before a period).
“This marks a real turning point because it explains why ovarian cancer is often diagnosed late – by the time a tumour is detectable in the ovary it has, by definition, already spread. This in turn could have sweeping implications for screening and prevention,” says Professor Sean Kehoe, chief medical adviser to Ovacome and one of the UK’s leading gynaecological cancer experts.
Ovarian cancer treatments
The other advance is the advent of new drugs and treatment regimes, which are leading to a more personalised approach tailored to individuals. “Each is a baby step but, together, they mark a major stride in tackling this notoriously hard-to-treat cancer,” says Dr Kehoe. Some of the most exciting new developments include:
- “Targeted” therapies, such as the drug Avastin, that home in on tumours and cut off their blood supply while sparing normal cells.
- “Sandwich” (neoadjuvant) therapy, in which half the chemotherapy course is given before surgery and half after surgery.
- Drugs that attack faulty genes by reactivating the repair mechanisms that normally help keep us cancer free.
A reader’s personal ovarian cancer story…
At first, former project manager Adele Sewell, 53, was relieved when her GP suggested her problems were due to an ovarian cyst. But it turned out to be much more serious.
My symptoms started when, aged 42, I noticed a shooting pain down my buttock and left leg. Six years earlier I’d had breast cancer and was terrified it had returned. But, after a clear bone scan, the doctor reassured me it was sciatica.
Over the next year or so more symptoms appeared. I began needing to pee every hour but although I was tested for urine infection nothing was found. I was also constipated.
I requested an extra cervical smear believing, like many women – I now realise wrongly – that this would pick up any gynaecological cancer. After a while it was clear something was very wrong. My belly was so swollen. My belly button was tender and when a nurse friend pressed my stomach I felt a sharp left-sided pain. I also had a persistent abdominal pain – all signs I now know of ovarian cancer but at the time I was unaware.
When the GP thought I had an ovarian cyst I was relieved. But after CA125 blood test, an ovarian ultrasound scan and having five litres drained from my abdomen as I was so uncomfortable, I was referred to a specialist. My husband Tony, now 57, came with me and as the consultant delivered the verdict – stage 3C (of 4) ovarian cancer – my heart fell. Even so, having survived breast cancer, I wasn’t as scared as I might have been. That was before he delivered the news that my life expectancy could be as little as five years. All I could think of was my daughter, Zindzi, 12 – I was worried about what would happen to her without a mum.
Fortunately treatment was successful but my history of breast and ovarian cancer at a young age strongly suggested a genetic link. I was found to have a BRCA2 gene mutation, which increases the risk of breast, ovarian and some cases of prostate cancer. I later discovered numerous relatives on my Dad’s side of the family have had these cancers.
Thankfully, nine-and-a-half years after initial diagnosis, despite a recurrence, I’m cancer-free and an active fundraiser for Ovacome, organising an annual Champagne tea party and fashion show. I’ve lived to see my daughter through university and into her first job. And the best news of all – Zindzi, now 22, has just had a BRCA gene test and it’s clear.
Ovarian Cancer Awareness Month
Ovacome is launching a social media campaign, Because you’re special to me – #Because – urging women to share OC symptoms via Facebook and Twitter. Find out more at ovacome.org.uk
Target Ovarian Cancer’s campaign is Start Making Noise on social media to raise both awareness and funds. Hold a noisy tea party, wear your brightest clothes on 10 March or have a karaoke night. Find more ideas at targetovariancancer.org.uk/fundraising
Ovarian Cancer Month takes place annually in March.