It’s your decision – make sure it’s an informed one

by Moira Adams.

Have you recently received your ‘invitation to be screened’ for breast cancer? Is this the first time you have been invited or have you been receiving these ‘invitations’ for a few years now? Chances are that, if this is not your first time, you will have given the information leaflet just a cursory glance and may not have noticed the changes in the format and wording?

Gone from the front page are the words “Helping you to decide” replaced now by the much more emotive phrases “10 minutes could save your life” and “Make time for breast screening”. “Helping you to decide” has been relinquished to the inside of the leaflet and is overshadowed by a convincing speech bubble “Going for a mammogram saved my life, Marion, 62.”  How important are these changes and does it matter?

It matters because attending the screening programme requires INFORMED CHOICE, a decision which women need to make based on impartial and accurate information, not on persuasive language and a ready-made appointment card. And, it’s important because it could adversely affect your health.

“10 minutes could save your life” could be put another way “10 minutes could find a cancer that would never have affected you in your lifetime”, resulting in unnecessary treatment (radiotherapy and/or chemotherapy) and unnecessary surgery (lumpectomy and/or mastectomy) all carrying the risk of harm.

“Going for a mammogram saved my life, Marion 62” How does Marian know this? Did screening find a life-threatening cancer? Or was it a benign condition called Ductal Carcinoma in Situ (DCIS)? If it was an aggressive life-threatening cancer, does she have a crystal ball that tells her that she will not die from the detected cancer anyway or that she will not suffer terminal secondary breast cancer (distant spread) sometime in the future? And if it was DCIS, how does she know that the radiotherapy will not cause another, possibly life-threatening, cancer somewhere down the line?    

All screening has benefits as well as HARMS (not “risks” as annoyingly referred to in NHS leaflets – ‘risk’ is not the opposite of ‘benefit’!) and breast screening is no exception. For some women, screening will always be their preferred choice. No amount of evidence will persuade them that screening is not always beneficial. For other women, attending screening will be taboo, along with presenting early with breast cancer symptoms, because they have a fatalistic attitude – “I’m going to die anyway”.

But for those women who fall in between these two extremes, unbiased information leaflets must be available to allow informed choice. The new leaflet was specifically designed to “encourage” women from the “most deprived communities” to attend screening as these women have the lowest uptake of screening. It was designed to increase screening uptake (the Screening Programme has not been achieving its targets) not to encourage open and honest decision making. The new leaflet is an affront to the intelligence of the women of Scotland.

We need to ensure that women have access to more comprehensive information. Breast Cancer Prevention Scotland has written to the Cabinet Secretary for Health and Sport, Jeanne Freeman, MSP and has been assured by the Scottish Government that our input will be sought for the next rewrite but no indication has been given as to when this might be.

So, in the meantime, information on the pros and cons of breast cancer screening is available from the Cochrane website (downloadable leaflet) at http://www.cochrane.dk/screening/index-en.htm. Or read the NHS England screening leaflet at https://www.gov.uk/government/publications/breast-screening-helping-women-decide

It’s your decision – there is no right or wrong decision only an informed one.

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