Ovarian cancer: How we are fighting to beat the disease that kills thousands of women each year
Dorothy Byers and Dragana Mahaffy from Belfast share their feelings on receiving a frightening diagnosis as Ovarian Cancer Awareness Month launches today. Una Brankin and Stephanie Bell report.
Every year 7,000 UK women discover they have ovarian cancer and campaigners are calling for earlier diagnosis in a bit to treat this disease more effectively.
One of those organisations is Target Ovarian Cancer, which is holding a free event in Belfast at the Radisson Blu Hotel at the Gasworks next Wednesday (March 9), from 10am-4.30pm, for women living with and beyond the disease.
Ovarian cancer has a poor prognosis, with just 40% of patients surviving five years. The medical profession has responded by carrying out extensive UK-wide trials designed to establish the effect early detection by screening has on ovarian cancer mortality.
This form of cancer made the headlines recently when the family of an American woman who died of the illness was awarded $72m, after claiming the disease was caused by her using Johnson & Johnson's baby powder and other products containing talcum.
The civil suit was part of a wider claim in the Missouri city of St Louis involving up to 60 people. This was the first case, though, among over 1,000 to result in a jury's monetary award.
We talk to two women living in Belfast, who share their experience of this potentially deadly disease.
‘If my experience can help to find a cure, I am happy’
Dragana Mahaffy (43), from Serbia, was a crime correspondent with a newspaper in her home country before moving to Northern Ireland to live in 2012 after meeting her husband Gordon (48, right), from Belfast, who works as a senior claims handler for an insurance company. Dragana was just starting her new life here when she was given the shock diagnosis that she had ovarian cancer, which then spread to her liver, spleen, bowel and diaphragm. She says:
I have never had any disease or any problems with my health. A few months before I was diagnosed with ovarian cancer, my cat jumped onto my stomach and caused an umbilical hernia.
As a result I had to have surgery in January 2014 and I went in for the operation with no worries. During the surgery, though, they discovered I had a tumour on my left ovary. I had no symptoms whatsoever, so it was an absolute shock for me. It was the worst thing in the world to be told, especially just as I was starting my new life.
For the first seven days I just thought I was going to die and I was extremely scared. I had an operation in Belfast City Hospital on February 27 and got another shock when they told me that the tumour on my left ovary was the size of a melon.
I was diagnosed with stage 3 ovarian cancer, but it was a low grade cancer, which was a good thing and which I hoped would give me more chances to live longer.
Then they discovered the cancer had spread to my liver, bowel, spleen and diaphragm. I needed specialist surgery and my doctor sent me to England and on March 23, 2014, I had an operation which lasted nine and a half hours.
They removed my spleen, part of my liver and part of my bowel, so I now have a stoma bag and they cleaned my diaphragm. I thought, if I can survive that, I can survive anything.
My cancer is a little bit different. It doesn't respond to chemo and if the cancer cells are under 1cm in size they look identical to normal cells and so cannot be picked up in a scan.
Last September I was put on hormone treatment called Letrozole and three months after it I had a scan with good results. They have never had a case like mine here, so they have no comparison and it is all a bit experimental, which is extremely difficult to live with.
I don't have a prognosis. With advanced ovarian cancer, around 15-20% of patients survive five years or more, but with me they can't say that as my case is rare. Part of me has to accept that that's life and I really am trying to be positive. My life definitely changed after diagnosis.
I worked as a journalist for 15 years and was caught up in a bombing and have been attacked by the mafia. It is an extremely stressful job but now I feel that I don't want to even watch bad things if I don't need to. After my first operation I had promised myself that I would do everything I could to survive. I'm still young and feel it is not my time to go. I love life and I love the people in my life.
There are so many things to do for myself, my husband, my family and my friends.
I am happy to stay positive and to keep myself occupied and I am surrounded by love and support. I do have really bad days, especially when I hear about someone who has cancer and who has passed away.
I don't handle that well. While I don't know what will happen tomorrow, I am really trying to believe that one day the scientists all over the world will find a cure for cancer. I strongly believe that will happen some day.
If my experience can help one doctor or scientist to find a cure, then I am happy. With ovarian cancer I can see why it is called 'the silent killer' as I had no symptoms at all.
I just live now for my three month scans and have to hope that everything will be okay, and so far so good, as the hormonal treatment appears to be working."
'When I got my diagnosis I was shocked, I had always been in good health'
Dorothy Byers (66) was diagnosed in 2010 with primary peritoneal cancer, which is a close relation to ovarian cancer and is treated in the same way. A former primary school teacher, Dorothy lives in east Belfast with her husband David, formerly head of music and arts at the BBC, and the former chief executive of the Ulster Orchestra. They have two grown-up children, Jonathon (35), a cellist, and Fiona (32), a senior marketing executive with Atlantic Records. She says:
It all began when I started to put on weight for no apparent reason. I would eat and feel full up very quickly, and then have terrible indigestion. I was bloated and gained a stone - up from 10 and a half stone to nearly 12 stone.
I was on HRT and went to see my GP, and it turned out I had another little thing - a prolapse, and that was pushing all this fluid down. So I had that drained off - four litres of it. Fortunately, I'd been having yearly blood tests as part of a trial for the United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS: www.targetovariancancer.org.uk).
My results had always been normal but in September 2010, my blood levels were raised. So I had a scan at Belfast City Hospital and that showed up a tumour, and some smaller ones, in the fatty lining of the abdomen. My ovaries were clear but the diagnosis was peritoneal cancer, which is very similar in symptoms and treatment to ovarian.
It was a shock - I'd always been in good health, apart from having a hysterectomy a few years ago, and before then, four miscarriages between my two children - I was very lucky to have my children.
Anyway, I'm a very pragmatic person. My wonderful husband, David, was with me, and I didn't break down. Maybe once or twice during the whole thing, but at that moment, I was just: 'Okay, what's next?' So the specialist nurse explained it was either stage three or four, but more likely to be stage three because it hadn't spread to other organs.
Well, after that I had a lovely Christmas. I had chemo on the Tuesday and by Thursday I felt awful.
My sodium levels had dropped drastically and I couldn't lift my head from the pillow, and I ended up in the Cancer Centre. I was there all over the New Year.
I had another scan in July and luckily, it hadn't gone into my lymph nodes but it had attached to my spleen.
I had to have surgery and I remember waking up in excruciating pain afterwards and I had to be taken straight back to the operating theatre. My poor husband was waiting for me downstairs and didn't know what was happening, until someone explained I was back in surgery.
Anyway, I got through that and then I had to have chemotherapy. I lost my hair, got two wigs and wore scarves. I used a little eyebrow pencil and just got on with it. Really, though, I couldn't have got through it all without my wonderful husband, David who came with me to every appointment and cooked the most delicious meals for me throughout.
I'm fine now, five years on. One tip I'd give anyone, going through the same, would be to keep a journal. You do get 'chemo brain' and it helps to write everything down."
One ovarian cancer survivor's great Mother's Day makeover only in Weekend magazine this Saturday
Find out about ovarian cancer
- Target Ovarian Cancer research has found that just 3% of women in the UK would be very confident that they would notice an ovarian cancer symptom
- Dorothy Byers will be attending Target Ovarian Cancer's Being Together Day on Wednesday, March 9, from 10am-4.30pm at the Radisson Blu, Gasworks, Belfast with lunch and refreshments included. The free event is run by Target Ovarian Cancer. Women living with and beyond ovarian cancer and their families will be able to attend workshops and come together to support each other. For more information visit http://www.targetovariancancer.org.uk/events/support/being-together-belfast
What are the symptoms?
- Persistent pelvic or abdominal pain (that’s your tummy and below)
- Increased abdominal size/persistent bloating — not bloating that comes and goes
- Needing to wee more urgently or more often than usual
- Difficulty eating or feeling full quickly after food
- Occasionally there can be other symptoms such as changes in bowel habits, extreme fatigue (feeling very tired), unexplained weight loss or loss of appetite. Any post-menopausal bleeding should always be investigated by a GP