Survival in metastatic breast cancer too unclear

At the international conference "CommUnity Vision 2025" in Amsterdam last week, metastatic breast cancer was hotly debated. What are the obstacles? What are taboos? The lack of knowledge about survival rates appears to be a thorn in the side. Pink Ribbon was there representing Belgian breast cancer patients.

Several hundred representatives of patient organizations from 42 countries worldwide, descended on Amsterdam from Oct. 28 to 30 for the international conference "CommUnity Vision 2025," organized by Gilead Sciences. The focus was on two patient groups: people with HIV and people with metastatic breast cancer. Both groups have more in common than meets the eye: taboos, stigma and obstacles.

Five-year survival

A thorny issue is how to express cancer survival rates, known as "five-year survival. That is the average chance of being alive five years after diagnosis. For breast cancer detected early, the five-year survival rate is about 90 percent. That does not mean that you only survive five years, but rather that your chance of being alive five years after diagnosis is very high at 90 percent. For those dealing with metastases, the outlook is markedly less favorable, but predictions are also much more inaccurate. The average five-year survival in cases of metastases (metastases) is only 37 percent, but some survive 10 years and longer. The odds depend on tumor type, location of metastases and treatment. Most countries do not keep detailed information on women and men living with metastatic breast cancer. Registration is limited and therefore the figures are much less accurate. One metastasis is not the other, making five-year survival here much less useful. Better registration is urgently needed.

Death Certificate

Another difficult issue is the lack of clear cause of death. Metastatic breast cancer is generally not curable and shortens life. Yet this cause of death is not universally noted at death. Doctors completing the death certificate more often note the immediate cause of death, but not the underlying suffering. For example, "brain hemorrhage," but not "brain hemorrhage due to brain metastases from breast cancer," or "pneumonia," but not "pneumonia due to decreased resistance from chemotherapy for metastatic breast cancer. Women want work done on more accurate recording at death, which would provide more clarity on survival. In Belgium, although doctors are encouraged to fill out the death certificate as accurately as possible, the reality is often different. For example, a doctor does always have to state the immediate cause of death, and he should preferably be as certain about that as possible. Underlying conditions he can fill in, but this is sometimes omitted. As a result, death statistics give a distorted picture. The patient group wants work done on more accurate death certificates.

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