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Feb 7, 2009

Make a difference!

SCIENTISTS and oncologists, motivated purely by altruism, sacrifice their time and financial resources in order to cure more patients with cancer. That is the romantic image some of us still harbour.The sceptics will say that all research is motivated by profit as huge pharmaceutical companies pay the piper and call the tune.

In North America and Europe, there is a third important mover of cancer research and treatment. This is the patient advocate. What is patient advocacy? It refers to speaking on behalf of a patient. The patient advocate can be anyone with the interest of the patient at heart. It can be a nurse, a social worker, a loved one, a friend or a former patient.

It can be you and I.

The advocate fights for the rights of the patient, protects her from paternalistic doctors and unscrupulous alternative practitioners. She ensures the patient is well informed. She may play a role in fund raising for public education programmes and research.

And more and more today, the patient advocate influences the direction that research and legislation take.

We have come a longer way in breast cancer than in any other cancer. It is a lot due to patient advocacy. Think of all the advances in screening and early diagnosis (mammography), surgical techniques (immediate breast reconstruction) and the new and effective drugs. A lot more is known about breast cancer at the molecular level.

From all this, fewer patients will die of breast cancer and many will have meaningful lives prolonged.

In the United States, the National Breast Cancer Coalition is one of the most important patient advocacy groups. An important aspect of its work is to influence research and public policy. For example, it has succeeded in increasing the budget of the US government for breast cancer research.

Europa Donna is the equivalent in Europe. It is actively involved in ensuring that women in Europe have equal access to state-of-the-art breast services. It works by disseminating information concerning European guidelines for best practice in both screening and treatment of breast cancer.

Where should our home-grown breast cancer advocacy groups place their emphasis?

For a start, there should be much more work on early diagnosis.

According to a research conducted by a professor from the University Malaya Medical Centre, at least 50% of women present to the doctor with locally advanced breast cancer (Stage III) or metastatic disease (Stage IV). Cure is not realistic in most of these patients.

Is the delay in diagnosis due to shame? Is it the fear of losing her breast to surgery? Is it because the bomoh or sinseh has promised a cure for a breast lump which has yet to be biopsied?

Or is it that our health system is not adequately equipped to deal rationally with the many breast lumps that women present with?

Even if we can identify the important factors, can we do anything about it?

Many lives will be saved if only breast cancer were diagnosed early (Stage 1 or even better pre-Stage 1). In the United States, the great majority of breast cancer patients are diagnosed in the early stages (i.e. Stage I & Stage II). With effective treatment, the five-year survival rate for early breast cancer is now 90%.

There is less glamour in sociological and epidemiological research (research on events happening to large numbers of people). But it is probably more important than basic scientific research (for example, the incidence of BRCA1 and BRCA2 genes in our population) in our local context.

Our local breast advocates can also push for mammographic screening. This is another proven way of decreasing breast cancer deaths. Unfortunately, it would be rather expensive to offer screening to all Malaysian women above 40 (as practised in some countries). Research into who should be screened and who should fund the screening can be undertaken by breast cancer advocacy groups.

I have outlined some ways in which our breast cancer advocacy groups can further the breast cancer agenda. I am sure there are myriad other ways. We can and should do more. Legislative, scientific and clinical decision makers should be lobbied to do more where it matters.

The war on breast cancer should be fought on many fronts.

Many women I know have sacrificed much of their time and energy in helping breast cancer patients. They are usually the breast cancer survivors. They help the newly-diagnosed patients understand the different treatment regimes. They lend a willing ear and a shoulder to cry on. This will all soften the blow of the diagnosis.

Theirs is a labour of love and their role should not be understated.

However, it is time to move beyond tea and sympathy.

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Denise said...

Great job putting this together! I recently ran into The Patients Advantage when looking for breast reconstruction surgeons. It's a great way to find the best surgeons and it does not cost a dime. Check them out (

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