Why young women must know about ovarian cancer

 

Dr Susana Banerjee

Consultant Medical Oncologist and Research Lead, the Royal Marsden NHS Foundation Trust, London

 

Early diagnosis could mean the difference between life and death for women with ovarian cancer.

Caught at stage one, 90% of women are alive five years later, but at stage four, that statistic drops to just five%

“Almost 60 per cent of cases are diagnosed at advanced stages three, so we must increase awareness of symptoms among women and doctors,” says Dr Susana Banerjee, Consultant Medical Oncologist and Research Lead at the Royal Marsden NHS Foundation Trust, London.

Early symptoms can be vague. “Symptoms of bloating, persistently feeling 'full', and constipation may not seem urgent, so women delay visits to the GP. Some are misdiagnosed cases too, such as irritable bowel syndrome, especially if they are under 60,” she says.

Around 7,000 cases are diagnosed in the UK annually, mainly in over-60s, but around 1,000 are in younger women. Women with BRCA gene mutations, such as actress, Angeline Jolie, are at increased risk of ovarian cancer as well as breast cancer.

However, treatment has come a long way in the last decade.

New drugs called PARP inhibitors, prevent PARP, a protein which repairs DNAdamage, from working in cancer cells, so they die. PARP inhibitors are taken orally after chemotherapy has shrunk the cancer, and extend the time before cancer worsens.

“More women diagnosed with advanced ovarian cancer are living five years later,” says Banerjee. “More awareness, especially among younger women, combined with the present rate of progress in treatment, will make that more common.”


 

As a young person, I didn't see ovarian cancer coming

 

Lisa Arthurs

Ambassador for target Ovarian Cancer

 

At 21, Lisa Arthurs was studying in Hawaii when she was diagnosed with ovarian cancer.

It flipped my world upside down. As a young person, you don’t see it coming, so it's a big shock.

As soon as the doctor said, “It’s cancer,” I didn’t hear anything else. My mum – my rock – was with me and she was asking the questions.

They removed the tumour three days later but didn't tell me that they failed to get all the tissue. I had follow ups for a few months, then went home to Canada.

Once home, some of the symptoms returned. Sitting on the sofa, I could feel the pressure of the seat through my body and into my tummy. I found out that the Hawaii operation hadn’t removed all of the tumour. I was livid. I had surgery two weeks later, this time successfully.

Six months later, I moved to the UK to train in physiotherapy. I’ve had excellent care here, but the emotional toll of follow-up appointments is huge. I was offered psychological help on the NHS. I couldn't bring myself to go, but I wish I had.

When I was first diagnosed, my consultants had never seen ovarian cancer in someone so young. It made me feel like I was an anomaly and there wasn't a lot of support for me, but when I came to London and found Target Ovarian Cancer I felt there were resources to help me. Having information and support at your fingertips is huge.

Five years after my second operation, I go most days without even thinking about cancer, which is great - it used to get me down. I don’t want to think about it right now and that's okay.


 

A special nurse for women with ovarian cancer

 

Natalie Percival

Matron, The Royal Marsden Hospital

 

Women with ovarian cancer are paired with a clinical nurse specialist (CNS). How can the CNS help?

Support covers more than medical issues. The CNS can offer access to psychological care and even financial advice, as patients commonly worry about paying their bills.

Psychological support extends beyond diagnosis. Percival says: “Often, patients do not ask for psychological help until treatment ends, when many look back and the full impact hits.”

“Each patient needs a personalised, flexible treatment plan. Some may need advice about side-effects, others about telling their three-year-old that they have cancer,” says Percival.

The CNS is a permanent member of the patient's care team, and can be consulted by phone and in person. “National patient surveys show that timely information and help from a CNS improves patient satisfaction,” says Percival.

“The CNS aims to ensure the patient's quality of life is the best it can be, on and off treatment. Patients help design their own pathway, and can access help including relaxation, massage and art therapy.”

“Younger women often worry about how to do the school run, so I can help schedule appointments around that. The woman's life is already turned upside down so we try to minimise that,” says Percival.

The CNS can also help women who suspect they have the BRCA gene mutations that put them at higher risk of ovarian cancer. “We can refer patients for testing and offer support. Patients thinking, 'If I have it, what does it mean for me and my children?' can call and ask the CNS.”