In July 2007, Sue Vincent went on holiday to Greece. As she enjoyed the warm summer sunshine and relaxed on the beach, she felt great – and looked it too.
“When you look at the pictures from that holiday, I look really, really well,” says Sue, 71, who is retired and lives in Solihull, Birmingham, with her husband Pete, 67. “So my diagnosis two months later in September really was a bolt out of the blue.”
After returning from her holiday, Sue started to develop vague abdominal symptoms, which she thought might be irritable bowel syndrome. “I was bloated, I felt tired, I just felt generally unwell,” she says.
“In the end I was badgered into going to the GP by a couple of friends. As soon as the doctor examined me it was quite clear that she was concerned about something, and I was referred to hospital.”
After more tests, doctors broke the news that Sue had stage 3C ovarian cancer (where the cancer has spread beyond the pelvis into the abdomen and lymph nodes). She was just 54.
Ovarian cancer is the sixth most common cancer in the UK, with around 7,500 new cases every year. As its symptoms, which the NHS says include bloating, reduced appetite and pain, are easily dismissed as other less serious conditions, it is often diagnosed late, making it harder to cure.
“There was an element of shock at first,” says Sue. “I remember thinking, ‘This is not happening to me. I can’t possibly have cancer’. But the look on Pete and my daughters’ faces brought it home to me – it was serious.”
Sue had surgery followed by six rounds of chemotherapy. “I found chemotherapy difficult,” she remembers. “I lost my hair, which for me was a big thing because I lost my identity. I was in pain and I felt very poorly after each chemotherapy session.”
After her treatment, Sue’s scans showed no evidence of disease – but she was advised to have genetic testing. “I was offered it because my mum had been diagnosed with breast cancer in 1968. After my diagnosis, we were invited to be tested and were told we both had a BRCA2 mutation, which meant we were more likely to develop cancer.”
BRCA1 and BRCA2 are genes that we all have, which normally protect us against cancer by repairing DNA. But if you inherit mutations of these genes – “faulty” versions that don’t work as they should – this increases your risk of developing various cancers, including breast, ovarian, prostate and lung. Approximately 1 in 400 people carry the BRCA1 or BRCA2 mutation.
“I was confused and then afraid for my girls, Natalie and Naomi, and the rest of the family. I realised that if mum and I were BRCA2 then in every likelihood, there were other members of the family who were in the same position,” says Sue. “But attached to that fear was a realisation that now we knew about it, maybe we could do something about it.”
In early 2010, Sue had a preventative double mastectomy. Shortly afterwards, a blood test showed that her levels of CA125 – a protein found in the blood that is a cancer marker – had risen. Her consultant said not to worry, as it was probably a blip caused by her recent surgery. But over the next few months, her levels continued to rise.
“That was a very difficult time. It meant the cancer was back, but we didn’t know where because it wasn’t showing on scans,” says Sue.
In July 2010, a CT scan finally showed that the cancer had returned in three places and was inoperable. “It was a massive bombshell, and my prognosis was not good. At that stage I was probably looking at a couple of years, if I was very lucky. I was scared, I’d only been married to Pete for just over 12 months. I didn’t want to leave him or my girls.”
It was then that Sue’s consultant told her about a clinical trial for a new targeted treatment called olaparib. “When I first heard about the clinical trial I wasn’t sure about it,” says Sue. “But my consultant persisted and I felt I owed it to Pete and my girls to do everything I possibly could. If olaparib was going to give me a little bit of extra time, then I was going to take it. I also thought that the trial could help other people in the future with an ovarian cancer diagnosis.”
Sue embarked on the treatment, which involved taking 16 capsules daily alongside chemotherapy. “When you first go on a trial, you don’t know whether you’re on the trial drug or the placebo. But when I looked up to see four or five people standing around the bottom of my hospital bed as I was about to take the trial tablets, I realised I must be taking olaparib,” she says.
Olaparib is a targeted treatment that stops cancer cells from being able to repair themselves. “It was the first cancer drug to be approved that is directed against an inherited genetic mutation. It targets cancers with faulty BRCA1 or BRCA2 genes,” explains Professor Johann de Bono, Professor of Experimental Cancer Medicine at The Institute of Cancer Research, London, who led the first phase I clinical trial.
“It is a PARP inhibitor, a targeted treatment that works by stopping cancer cells from repairing their DNA. This causes cancerous cells to die, while sparing healthy ones.”
Clinical trials have shown that olaparib is effective for patients with a range of cancers associated with BRCA1 or BRCA2 mutations, including breast, ovarian and prostate.
Scans and blood tests showed that Sue was responding well to the new treatment. But as the months ticked by, she was concerned that her cancer would return.
“I was hoping for an extra 12 to 18 months when I joined the trial. A year later, I thought I was approaching that time and that my cancer would come back – but it didn’t.
“For the best part of two to three years, each time I saw my consultant I would have that feeling as I was driving to the hospital – it’ll be today, because it’s due back. I’ve had my extra time. But here I am, 14 years later.”
Sue’s scans continue to show no evidence of disease and she feels, she says, “extremely well”.
“Since I started taking olaparib, so many things have happened. In 2011 I was awarded an MBE for my work at Birmingham Council, where I headed up training and employment services for people with disabilities. My first grandchildren were born in 2012. Now I have five, with another on the way next year.
“My grandchildren are my world, and we spend as much time with them as possible. Had it not been for the olaparib trial I would never have met them.
“Pete and I have travelled and had so many experiences because I’m still here. Life is precious. We’re enjoying it in every way we possibly can and I have great hopes for the future.”
This Christmas, The Institute of Cancer Research is asking for your support to help more women survive cancer. To donate, visit icr.ac.uk/giftofresearch
