The NICE guidelines on follow-up for breast cancer patients need urgent revision, warn experts in this week's BMJ.
More than 1.2 million women and men worldwide are diagnosed with breast cancer each year and it is now recognised as a chronic disease that can recur even after 20 -30 years.
Survival continues to improve, so new cancers are now more common in many patients than recurrence because the treatments of the first cancer are so effective. However, follow-up protocols still vary widely both within and between countries and are not always evidence based.
The National Institute for Health and Clinical Excellence (NICE) in England and Wales state that the aims of breast cancer follow-up are to detect and treat local recurrence, to deal with adverse effects of treatment and to provide psychological support.
The guidelines suggest that these aims can be met by two to three years of follow-up, and that routine long term follow-up is ineffective and unwarranted. They also claim that the yield from mammography is low.
But Michael Dixon, Consultant Surgeon at Edinburgh Breast Unit and David Montgomery, Clinical Research Fellow at Glasgow Royal Infirmary, argue that the NICE guidelines do not meet their stated aims.
Although true local recurrence after breast conserving surgery falls with time, the development of new cancers in the treated breast increases, so the overall rate of ipsilateral breast events is constant at 0.5 to 1% each year for at least the first 10 years and probably for the rest of the patient's life.
If "recurrences" in the treated breast and armpit are combined together with new cancers in the opposite breast, the annual incidence of treatable disease is constant at 1 to 1.5% for at least the first 10 years, and 70% of such events occur after the first three years.
If NICE is to achieve its aim of detecting and treating local recurrence it clearly cannot be achieved with a three year follow-up, they say.
Data also show that mammography is a very effective way to detect treatable local disease, and fully funded mammographic surveillance programmes specifically for patients with breast cancer are urgently needed, they add.
In contrast to NICE guidelines, they recommend that clinical examination should be annual for two years and surveillance by mammography thereafter.
Ongoing psychological support should also be available, and in between visits for mammograms, patients should have direct access to a named breast care nurse, specialist nurse or doctor and access to prosthesis advice and fitting.
Timely investigation of symptoms and communication of test results is also vital to reduce anxiety and improve ongoing care.
Patients' needs vary, so follow up programmes for patients with breast cancer patients need to be evidence based, flexible, and tailored to their lifelong needs, they conclude.