Ovarian cancer: What women should know
The day she gave birth to her first child, Astrid Wynne was told she had ovarian cancer – at 28. Every woman, whatever her age, should recognise the symptoms, she argues
Tuesday 24 March 2009
The first I heard about the cancer was when I came round from the general anasthetic after my caesarean. I should have suspected something was wrong when I heard the doctor say "there's something solid inside", with a hint of panic. But through the haze of hormones, shock and painkillers, it was only when I saw my husband in tears that I forced myself to take things seriously.
"The doctor says they've found a tumour and if it's malignant we're going to have to go back to the UK for treatment. I'm scared...," he told me. They'd just given me some opiates, so I was strangely relaxed when I received the news. "Ah, don't worry about it," I replied.
All the same, when he left the room I had a bit of a chat with God. It went something like this: "Dear God, I've just had a baby. I can't possibly die at the moment. You do see that don't you? I can't leave him on his own with her...." I went to sleep, job done.
No one is ever ready for a cancer diagnosis, people expecting a child perhaps less so. There were no symptoms to set alarm bells ringing. The only slight concern was a cyst that had been growing on my left ovary at the same rate as the child. We were told that all that was necessary was to have it taken out after delivery, as though this were standard procedure. It was only when the cyst ruptured four days before the planned C-section that everything changed. An emergency operation, a tense atmosphere in theatre and afterwards a sense of disbelief that even the doctor seemed to share.
We were living in a small town in East Malaysia with no path lab and no oncologists. My samples were driven 200 kilometres down the coast for examination and, it being Christmas, took 10 days to yield results. I spent the time trying to ignore the possible diagnosis, concentrating on my new daughter, Katie. I played out a positive result in my mind, where I'd laugh about the scare when it was over. I couldn't play out the alternative because it was too frightening. Everything seemed to happen behind glass, in another dimension almost. I didn't notice that the tsunami had hit West Malaysia. Even when I saw the roads washed out on the way home from the hospital; even when we started getting emails from friends and relatives wanting to know we were safe.
The night we got the mixed news – yes, the tumour was malignant; no, it didn't look like it had spread – things were no less surreal. We went back to the flat and spent the three hours before midnight ringing around hospitals and doctors in the NHS, taking advantage of the eight-hour time difference with the UK. When I eventually reached my consultant's secretary, she was the first person to focus on the child and not the cancer. I knew I'd come to the right place. She made us an appointment for the following Monday at St James's in Leeds.
The next three days were frenetic: packing up the flat; sending Katie's passport documents to London because the Kuala Lumpur consulate staff had been seconded up to Thailand after the tsunami; getting seats on the plane. Dark thoughts lurked in the lulls. I remember holding Katie's head up to mine, willing her to open her eyes, saying "remember me". Whenever I tried to sleep, I saw the faces of my friends and family, crying. It was horrible.
But back in Britain, my overriding impression of Dr Timothy Perren's cancer clinic was of determined positivity. Cheerful nurses did the rounds of waiting patients, telling them how many people were in front of them and whether they had time for a quick coffee. During consultation, we talked about "the disease". This calmed me down, put things in perspective. "Cancer" is such an emotive word.
Most people in there were a lot older than me, grandparents and great grandparents. I found out early on that ovarian cancer is usually a disease of post-menopausal women. According to Cancerbackup, a leading cancer information service, 85 per cent of women diagnosed are over 50. Statistically speaking, having had children reduces the risk of getting the disease, as do taking the contraceptive pill and maintaining a healthy weight. When I was first diagnosed, scouring the internet for some kind of understanding, this completely puzzled me. I was 28 with low body fat, pregnant when the tumour developed and had been on the pill for years before that.
Was I unique? Not at all. In fact, I wasn't even that unusual. The consultant told me he saw a case like mine around once every three years. In the course of treatment, I heard of two other women in the same situation. Both, like me, survived the first few years at least. And one, like me, went on to have another child. But despite the fact that we exist, there seems to be little in-depth understanding of ovarian cancer during pregnancy.
In a lot of ways, I can understand this. Things are so grey in terms of diagnosis and monitoring that the medical profession has enough on its plate without researching the more unusual cases. There is talk about introducing symptom diaries as an early-warning system for the disease. Persistent and frequent abdominal pain, bloating and difficulty eating should no longer be dismissed as IBS. Giving the patient a voice in diagnosis is important because so much monitoring involves piecing together diverse indicators.
In my case, they ran blood tests for CA125, which is a tumour marker for ovarian cancer and CA19.9, another protein that was raised in my blood. This CA125 test was complicated by the fact that levels of the protein can go up for other reasons as well – endometriosis, or anything that irritates the inner lining of the womb. As one surgeon put it, "Sometimes you see CA125 levels that are quite low and when you open the patient up, they are riddled with cancer."
They ran CT scans on me to get a different perspective. Three-d images of my insides were analysed by radiologists looking for shadows and abnormalities. Just after sixth round of chemotherapy, one scan gave cause for concern. This led to an MRI and three weeks of uncertainty (though, admittedly, I had worry fatigue by this point and so was fairly sanguine). The MRI revealed that the suspect shadow was the result of the equipment and not growths.
Unsettling as all this was while I was in regular contact with doctors, I found the uncertainty a whole lot more difficult once I was in remission. It takes 10 years to get an all-clear for my particular type of cancer. At the beginning, they run blood tests and physical examinations every six weeks, then three months, then six. The run-up to each of the tests is fraught with a lurking sense of unease. It's not like chemo, where you might be exhausted, bald and bruising easily, but at least you feel like you're doing something about the cancer. Successive tests leave a question mark hovering over your head.
Fear became an almost physical entity at times. It was at its most debilitating around the two-year post-treatment cut-off point (before which a recurrence of the disease signals that treatment may have failed). During this time, one blood test came back with cause for concern. I had to wait three months to see if anything had grown. I knew that if there was something there, it meant chemotherapy had held the cancer back but not killed it off. There were alternatives, but they tended be less effective (ie, they were not going to save me).
All this had an effect on my relationship with Katie. At the back of my mind was the thought that I might not be there to bring her up. In the early months, this translated into giving her relationship with other family members space to grow. At other times, I held a part of myself back from her in a misguided attempt to protect her from the pain of losing me. When the worst scare came, her toddler predilection for irrational behaviour had nothing on mine.
Yet fear is a small price to pay for survival. About six months after the end of chemo, I got news that someone who had been diagnosed at the same time as me had died. We had shared a couple of letters, a diet sheet and a book, but I sobbed as if she had been a close relative. It was like I'd got on the bus with someone and glanced back to find their seat was empty. A stark reminder that more than two thirds of women diagnosed die from the disease.
Four years on, I recognise just how lucky I was. To have had cancer with the positive experience of motherhood to balance it out. To have been diagnosed in an era when the palliative care for chemo is so good. Above all, to have kept my fertility. At the outset, I was told to prepare for a full hysterectomy (standard practice in most cases, when patients are past childbearing age). Once they confirmed the disease was stage one and had not spread from another organ, the doctors grew more relaxed. I was still young; they would spare me early menopause until we had completed our family. Erring on the side of caution, they told me to wait until the two-year post-treatment cut-off point was passed before conceiving a second child; better, they said, to leave one child without a mother than two.
The two-year wait dragged on to three. Then in September last year we had another daughter, Anwen.
I am sure I will have more low points during the next few years. For the moment, I feel very positive. Chemo is still a card we can play if we have to and, apparently, return rates are at their highest close to first diagnosis. At my last check-up, they told me I might be able to hold on to my reproductive organs into my early forties, as long as everything behaves itself. There is even the possibility of more children... provided I can talk my husband round.
Warning signs: What to look for
* There are around 6,600 new cases of ovarian cancer in the UK every year. Causes of the disease are still not fully understood.
* Around 4,400 women per year die of the disease. They account for around 6 per cent of all female deaths from cancer.
* Early diagnosis vastly increases the chances of survival.
* Previously thought of as a silent killer, it is now recognised that there are certain symptoms to look out for: persistent pelvic and abdominal pain; increased abdominal size/persistent bloating – not bloating that comes and goes; difficulty eating and feeling full quickly.
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