Battling a silent killer

Published on Thursday 19 February 2009 13:43

IT BEGAN in 2004 with a sore back, irregular bleeding and a swollen feeling in her abdomen. Margaret Smith, 47, figured all the heavy lifting she had to do in her job as a radiographer at Glasgow's Western Infirmary was to blame, but as the symptoms persisted, she spoke to her GP.

At first she was told she must be premenopausal. But when tests proved otherwise, it was claimed that she was just suffering from middle-aged spread.

Eighteen months later, having lost three and a half stone in weight, in an increasing amount of pain and now with bowel problems to add to her woes, Smith was eventually diagnosed with ovarian cancer. "It's not unusual to take such a long time before diagnosis because the symptoms of ovarian cancer mimic so many other things," she says. "But trust your instincts. Don't listen to the doctors; they told me there was nothing wrong with me. But I kept going back and saying, 'I've lost three and a half stone but I've not lost any on my stomach. There's something not right.'"

In the end, ironically, she received her diagnosis in the hospital where she worked. But even though she was a health professional, ovarian cancer hadn't even crossed her radar. "It has such a low profile, I had no idea it could be a possibility," she says. "But once I started losing all the weight I knew in my heart of hearts it was cancer – I just didn't know what of."

The knowledge came as an enormous blow – "there has never been anything like it in our family" – but it was almost something of a relief. "I was beginning to think I was going completely bonkers. So although it was a pretty devastating result, now I had something to fight," she says.

"I was diagnosed on the Monday and I had my surgery on the Thursday. I had a full hysterectomy, because by that stage it had spread to both ovaries. I had part of my bowel removed and I got a colostomy bag. My cancer was so advanced that had it been diagnosed just a couple of months later, I wouldn't have made it."

A course of chemotherapy followed, which was rough, but she made an excellent recovery and went back to work in January 2007. "I was quite determined I was going to be the one person who was going to beat this," she says. "I knew the statistics. I knew at that stage that, with a large percentage of people, it comes back, but you always think you're going to be the one who beats the odds. And if a positive attitude was anything to do with it, I was certainly going to beat the odds.

"But by the July my body knew better. The cancer was back."

She was devastated. "I'd already been through so much," she says. "Plus, this made it quite obvious that I was probably going to be terminal, and I have a young daughter. She's 14, so that made it tough."

She went on another course of chemotherapy, which was unsuccessful; the cancer returned again in May last year. "It was a really crap year, 2008," she says.

Now back on the chemo, she's determined to make the most of whatever time she has left. "I'm generally quite well," she says. "I'm very tired all the time but I manage to do all the important things, like the school run. I gave up work because my prognosis was so poor and I wanted to spend what little time I had left with the family."

But despite the negative outlook, she remains remarkably positive. "A lot of good has come out of this," she insists. "I know that's a strange thing to say, but my relationship with my husband and my daughter is a lot deeper than it could ever have been. We talk about everything, we're very open and honest, and that has been great. And you get to realise who your real friends are: the ones who don't disappear when it's inconvenient and awkward and upsetting."

As for her 'bucket list', unfortunately she won't be able to fulfil her dream of going to India to see the Taj Mahal. "I'm not well enough to travel," she says. "But it doesn't stop me enjoying armchair travel. And there are an awful lot of things that are more important.

"My sister's son has just had a baby. I look at him and think I'm not going to be there for my daughter's babies, but I just have to make the most of what I have at the moment and fight as hard as I can for as long as I can."

For more information about the work of Macmillan nurses, visit www.macmillan.org.uk. If you have concerns or questions about living with cancer, call 0808 808 2020

Ovarian cancer: the facts

Around 6,600 women in the UK are diagnosed with ovarian cancer every year, approximately 600 of them in Scotland.

More than eight out of ten (85%) cases occur in women aged over 50, and mostly in those who have been through the menopause.

The recurrence rate is high, explains Jane McCafferty, Macmillan's clinical nurse specialist in gynaecology in Fife, because "about 85% of women present with stage three and four ovarian cancer, which is really advanced".

There are several types of cancer of the ovary, but treatment is always surgery – including a full hysterectomy – followed by a course of chemotherapy.

Early detection of ovarian cancer is difficult because women are unlikely to suffer much pain until the later stages. "Most GPs would only see one patient every five years with ovarian cancer," says McCafferty. "The symptoms also tend to mimic bowel problems and digestive problems."

There is no national screening process. "There is a protein marker called CA125 – all the patients get really hooked on this," says McCafferty, "but CA125 can be raised for other reasons and doesn't necessarily mean someone has cancer."

There are genetic links between breast and ovarian cancer. "If several members of your immediate family have ovarian cancer there is an increased risk," says McCafferty, "but only 5% of ovarian cancers are genetic."

It is more common among higher social classes because they have fewer children, while breast-feeding and being on the pill for five years or more are also thought to help reduce the risks.

Western women are most susceptible to ovarian cancer. A study found that Japanese women were at a much lower risk, but after just a generation living in the US they were found to be as likely as their American counterparts to contract the disease.

Symptoms can include any of the following: loss of appetite; indigestion, nausea, excessive wind and a bloated, full feeling; unexplained weight gain or loss; swelling in the abdomen; pain in the lower abdomen; changes in bowel or bladder habits, such as constipation, diarrhoea or needing to pass urine more often; lower back pain; pain during sex.