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Dec 17, 2008

The fear of recurrence

To many cancer patients, the fear of recurrence can be overwhelming. A lifelong ordeal has just begun. THE patient is diagnosed to have breast cancer. She is in a state of shock and disbelief. She pulls herself together and seeks treatment. She undergoes surgery. This is followed by radiotherapy, chemotherapy and hormonal therapy.

She is exhausted by the side-effects of treatment and the interminable visits to the oncology clinic. Her professional, family, social and sex life suffers. Her private moments are punctuated by worry and tears. Her treatment finally comes to an end. She is told that her disease is in “remission”.

To many breast cancer patients, a lifelong ordeal has just begun. She fears recurrence and there is little she would not do to prevent it. She needs guidance more than ever. She may easily fall prey to doctors and amateurs who promise a lot and deliver little. The fear of recurrence can be paralysing. It can consume almost all her waking hours.

Guidelines are available to partly address concerns regarding recurrence. The American Society of Clinical Oncology (ASCO) updated its guidelines in 2006.

In the first three years following treatment for early breast cancer, patients should be followed up once every three to six months. In year four and five, the follow-up visit to the oncologist should be once every six months. Beyond five years, visits should be annually.

At each visit, a complete history should be taken followed by a thorough physical examination. Annual mammography of the remaining breast (sometimes one, sometimes two in the case of breast conserving surgery) should be performed.

What ASCO does NOT recommend for the breast cancer survivor who is well and without any complaint (asymptomatic in medical terminology) is blood tests, tumour marker tests, a chest x-ray, a radioisotope bone scan, a liver ultrasound scan, a whole body CT scan and a PET/CT scan. Basically, everything an oncologist is pestered to do at each follow-up visit of many such patients.

Doctors working in the UK usually follow the guidelines issued by the National Institute for Health and Clinical Excellence. (The lucky devils in this organisation have an acronym to die for: they are the NICE people).

These guidelines are even more parsimonious than the American ones. Follow-up beyond three years is not justified or recommended. However there will be a revision of the NICE guidelines next year as it is realised that the problems that beset breast cancer survivors last a lifetime and not just three years.

The NICE guidelines, similar to the ASCO guidelines, are resolutely against routine blood tests and imaging scans if the patient is asymptomatic.

These guidelines evolved from randomised controlled trials. These trials showed that the survival times for breast cancer patients were similar whether or not they were followed up with extensive investigations. Evidence-based medicine not only applies to treatment, it also applies to following up patients.

What use, you may ask, is follow-up surveillance if not to do a battery of expensive and unnecessary tests? The answer is: a lot.

Firstly, it is to detect recurrence in the other “normal” breast. It is also to detect recurrence in the breast treated with surgery and radiotherapy. Detection of a small localised cancer usually means cure.

Secondly, follow-up assessment (which consists of a complete history and a thorough physical examination) is to enable the oncologist to order the relevant and necessary blood tests and imaging scans whenever there is a suspicion of recurrence.

Most important, it is an opportunity to counsel the patient. I ask the patients direct questions about the side-effects of treatment (past and present) and see if I can do anything about them. I indirectly touch on their social and sex life to see how they are coping. I ask about fatigue. I look for osteoporosis. I ascertain if there is a cognitive dysfunction (memory loss, slower reflexes, intellectual decline). The young, fertile woman may want to have children and she needs special counselling. I try to manage those with a weight problem.

Despite the most comprehensive and authoritative guidelines and all the well-intentioned counselling, many patients still live fearfully for the rest of their lives.

To them, I advise distraction therapy. Go to the Dewan Filharmonik Petronas for a concert or to the neighbourhood cinema depending on your taste. Read the New Yorker or The Star, whatever you fancy. Join the line dancing class. How about yoga? Walk around the park endlessly. Learn to savour the varieties of burgundy or join the cooking class organised by your residents’ association.

Who knows? You may end up thinking less of cancer recurrence and become the lithe, erudite and discerning belle you always wanted to be.

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