Strangely enough, some major harms of breast cancer screening (BCS) are very rarely mentioned. You can’t read about them in the USPSTF, in the Prescrire synthesis, in the PDQ° of the US NIH, in the Canadian reports for the CTFPHC, in the NICE recommendations, nor in the IARC handbook on BCS (1–6). The Marmot report only mentions a few of them (7). These harms are not usually considered in the benefit-harm analysis of BCS. Neither are they mentioned by the information leaflets nor by the patient decision aids, even those considered of best-quality.
Indeed, you won’t read about these harms unless you do extensive research yourself.
Quality of life, job, income
Being labelled ‘breast cancer patient’ turns your life upside down for a long time (8). Two years after diagnosis, quality of life is still reduced for more than 1 out of 2 women. This has more of an effect on them if they are younger, unemployed, poorer and already sick.
Most women stop working for a long period of time. A lot of them never return to work, some because they lost their job. Others shift to a part-time job. Of course, their income goes down. In France, poverty among these women rises from 14% to 25%.
Sexuality, self-image, couple life
In a French survey, 2 years after a breast cancer diagnosis, more than 1 out of 2 women say that their sexual desire has decreased (8). As well as frequency of intercourse and satisfaction.
The causes of these sexual disorders would be tiredness, and a degraded self-image due to a mastectomy, hair loss, weight gain or loss, and impaired communication within their couple (9,10).
Are separations and divorces more frequent after a positive BCS? I have been unable to find any data.
Anxiety, depression, suicide, cardiovascular death
No surprise that during the first year after a cancer diagnosis, anxiety, depression and a psychotropic medication are at least 10 times more frequent than in the general population (11), and suicide rates are 3.4 times higher (12).
Cardiovascular deaths rise during the first 3 months (12). Does the number of car crashes also rise? I could not find a single survey about it.
What we can do about that
Of course, BCS is only one example. Doctors and medical scientists do not often take into account the consequences of illness and treatment on a person’s life – economic, social, sexual, familial and other.
Is it because they would have to rely on patients, sociologists or anthropologists to learn about them?
I suggest that every author or group takes the time to consider non medical benefits and harms, whether developing a medical synthesis or recommendations, a patient decision aid or an information leaflet for patients. They may seem to lie outside the medical research field, but they have a great importance and they do matter to people.
1–12: references on demand (ask firstname.lastname@example.org)
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