Feature

When the political became personal

Health promoter Rachael Dixey was diagnosed with breast cancer – and learnt a lot about why the UK has such high mortality from the disease

I was told I had breast cancer on 11 September 2001, as the first plane hit the World Trade Centre. It made a surreal day even more so, but at least I was still alive at the end of the day when ‘everything changed’.

As a health worker, has my experience of being a patient changed my perspective? Inevitably, yes. It has made me realise some of the tensions between public health and individual health.

‘Why me?’ is the common response to a diagnosis of serious disease. I knew that ‘why not me?’ is just as logical because breast cancer is common, affecting one in nine women in the UK.

It is comforting to know that breast cancer mortality rates in the UK fell by 25 per cent for women aged 20-69 between 1987 and 1997.¹ Even so, a diagnosis of cancer is pretty scary: many women still die from breast cancer and the statistics are much more frightening when you might be one of them.

Self-examination and screening

Given my job, I should know about the significance of breast self-examination (BSE) and screening. In fact this is complex, divides expert opinion and has a shaky evidence base. The government recently advised GPs not to recommend routine BSE because clinical studies have shown that it does not reduce mortality rates.

However, the NHS breast cancer guide encourages women to self-check. I found my lump when it was still small enough that I was offered a lumpectomy – and my routine over-50s mammography call-up was another three years away.

Should routine mammography be extended to women under 50? And how significant a role does screening play in detecting the disease? Opinion is divided. Those who argue that routine mammography is not money well spent attribute the decrease in mortality from breast cancer to improved treatments. Conversely, the WHO favours breast screening, stating that there can be a 35 per cent reduction in mortality among screened women aged 50-69.

I met many younger women, in their forties, thirties and even twenties, with breast cancer and obviously from an individual point of view the opportunity of an early mammogram is preferable. But from a public health point of view it is not cost effective.

Which treatment?

There are equally conflicting opinions on treatment. I recently saw the newspaper headline: ‘Mastectomies “unnecessary” say key breast cancer studies’ (The Independent, 17 October 2002). I wondered how I would have felt if I had had a mastectomy.

Some health professionals argue that breast cancer is over-treated, and from the public health perspective there are real issues, such as the high number of false-positive results and the fact that it is not known which cancers will go on to threaten a woman’s life.

Personally I would opt for treatment – surgery, chemotherapy and radiotherapy – in case I was among those with an aggressive cancer. This means that many women do indeed have ‘unnecessary’ treatments, but what is the cost of failing to treat women who need it?

In the future, microarrays – tiny silicon wafers that can detect genetic mutations and signal which of these indicate an aggressive tumour – may mean doctors can better decide which patients need aggressive treatment and which don’t.

At present, oncologists tend to err on the side of caution, leading to many women having unnecessarily aggressive and toxic treatment, such as chemotherapy. Chemotherapy is vile. It takes months – six in my case – made me progressively more tired, made my hair fall out and left me with phlebitis, sunken arm veins and pain.

But you know that it is attacking the cancer that might – or might not – be circulating in your body. A real improvement would be a drug that did not have to be given intravenously. This is already the case for some types of cancer.

Care lottery

My experience with our much-maligned NHS was superb, starting with my GP and throughout the nine months of treatment. The quality of care at Leeds General Infirmary and Cookridge cancer hospital was outstanding, with a depth of kindness, courtesy and professionalism from nursing staff that I didn’t know existed. Breast cancer care seems to have got it right. So if is possible for this illness, why not all the others?

But even in the case of breast cancer, there is a striking geographical variation in services (The Observer, 29 September 2002). Some of the patients I met were not as fortunate as I was. For example, the 23-year-old woman sent for a bone scan because the consultant suspected the cancer had spread; a year earlier her GP had told her the lump was nothing to worry about. The same thing had happened to a woman my age four years previously; she was now undergoing a double mastectomy.

Radiotherapy is problematic in many areas of the country. I had radiotherapy two weeks after my final chemotherapy but the Royal College of Radiologists revealed recently that the average waiting time for radiotherapy has risen and that some patients have to wait for up to three months.

Some trusts do not have the facilities to offer radiotherapy, so women have to have a mastectomy rather than a lumpectomy. In some parts of the country it seems to be routine to send women with breast cancer for a bone scan. I asked my oncologist why this didn’t happen in Leeds and whether it was a decision based on financial or clinical grounds. Clinical, I was told, and I believed him. No decisions, he added, were taken purely on financial grounds. I didn’t believe that.

The health professional who helped most was my breast care nurse: I could phone her whenever I wanted, and although I only saw her a few times she was incredibly helpful. Breast care nurses are funded by the charity Macmillan. Why does this service have to rely on public donations? And if it is so helpful, why is it only cancer patients who have such good support – why not other illnesses that might be just as frightening?

The clinical mindset

While I’m full of praise for the health personnel who cared for me, I have two gripes: the lack of attention to health education and the lack of willingness to consider complementary therapies.

Health education is not part of the mindset. Perhaps the role of specialists is to treat and cure, but from the large number of health workers I met I would have expected some mention of lifestyle, exercise, diet, and stress – both before and after cancer.

All can help at least with the side effects of treatment and, possibly, prevent cancer recurring. There is an emerging evidence-base for the role that lifestyle plays: exercise is known to help women in all stages of treatment and to combat fatigue.² It was very important to me to be able to carry on with physical activity – it was how I measured my state of health – but I received little encouragement from health professionals.

There also seems to be little patient education. I was shocked that many patients knew so little about their diagnoses or why they were receiving a particular treatment. Obviously everyone has different coping mechanisms – one being not to enquire too much – but some women were left uncertain and not knowing which questions to ask. This is particularly important when it comes to decisions about clinical trials; having to decide between treatments when no one knows which will be better is very hard.

This raises issues for health educators – not only how best to give information when someone has cancer, but how we educate about cancer generally.

And why are health professionals so reluctant to consider non-conventional treatments, even diet? There is mounting evidence of a link between diet and breast cancer. Jane Plant, an eminent scientist, has written a persuasive book examining the role of diet in breast cancer causation and treatment.³

A natural healer in the cancer hospital showed me a copy that she had wrapped in plain brown paper, as though it was a subversive tract. But I had already bought the book, been persuaded, and cut out all milk-based foods.

A UK cancer doctor, Peter Gravett, who has found benefits for cancer patients from nutritional treatments, said recently: ‘Oncologists here in Great Britain must be among the world’s most conservative and least innovative. Though it may be unfair to attribute the poor performance of UK oncology entirely to the inertia of our oncologists, constrained as they are by the health service and its financial restrictions and the rationing imposed by organisations such as NICE, nevertheless our consistent position near the bottom of the league in results for treatment of diseases such as cancer attests to the tenacity with which the average practitioner persists with treatments that he or she is perfectly well aware are ineffective, and to the suspicion, if not positive hostility, with which new developments are greeted’ (The Observer, 15 September 2002).

The UK has the worst five-year survival rate for breast cancer, (63 per cent) compared with other European countries, or the US at 82 per cent. And when you are in one of the worst performing countries and you have breast cancer, this statistic matters a lot.

Cancer changes you. It is tough having it hanging over you but it has not all been bad. I have seen and learnt a lot and had some fun along the way. I understand more about health services, have (I hope) become more compassionate, and am even more committed to Health for All.

I learnt that you cannot imagine as a well person what it feels like to be an ill person. I have also picked up lots of teaching material. For several years before I had cancer I used the hypothetical case of a woman in hospital with breast cancer who goes outside to smoke. On the ward, I met the real person. Her name was Joan and it was good to hear her side of the story.

Thanks to Laura Potts, Marilyn Kirshbaum, Mary Green and Jane South for comments on drafts of this article.