Sometimes you just know when you have made someone's heart sink. When I sent my letter off to my local breast screening unit, asking for a bit more detail on what use breast screening may or may not be to me, I knew they'd roll their eyes and say either out loud or in their heads 'Oh knickers, it's one of those women.'
Still sent the letter tho'. Here's what I wrote:
Dear Dr.
Thank you for my recent invitation to attend my first breast screening. I was intrigued to note that the word ‘cancer’ does not actually appear in the letter, though it does, of course, in the leaflet.
I am interested in knowing more about one particular aspect of breast screening - the risk of finding cancers which are then treated, even though without screening they may never have been symptomatic or threatened life. I have no interest in the risk of radiation from mammography, pain during mammography or worry about screening. I understand the notion of false positives and negatives as inevitable in any screening, so I have to lump it when facing their possibility. There is no need to cover those in any reply.
I have fewer risks for breast cancer than many women. I have a normal BMI, I am peri- not yet post-menopausal, a non drinker, a non smoker, a compulsive fruit and vegetable eater, jog about 10-12 miles in a week, non Pill user, and have no known family history of breast cancer. My family ‘do’ old age, stroke and heart disease, but I have managed to muster two premature deaths from bowel cancer, in my mother and her grandfather. I do not ascribe to these a significant pattern of inheritance, though inevitably I notice it.
I have not had children and have consequently never breast fed and I am getting older. I’m not sure where periods starting at 12 fit on either side of a positive or negative factor so I lob it in for your information. I even follow the breast awareness behaviours and grasp the shift away from referring to self-examination, which doesn’t actually work.
I surmise a lower risk must translate into less likelihood of breast cancer, or no one would bother with risk reduction advice. Given my risk profile, I assume therefore that I am less likely to benefit from screening as I am less likely to get breast cancer. But, it seems to me, whilst any likely benefit is lower the risks of screening remain the same. Is this correct?
I want to know more about DCIS and its relation to ‘proper’ breast cancer. Your leaflet states about 8 out of 1000 women screened will be found to have cancer. Of those 8 though, it looks to me as 2 will be told they have DCIS. As the leaflet says, you don’t know which DCIS cases will become harmful, so you have to offer women treatment without much idea if it is necessary, or not. It looks to me as if 1 in 4 women diagnosed through screening will be in that boat. Have I got this right? That looks like a big error rate to me.
I consult health statistics quite regularly - for reasons of work, not neurosis - and I know breast cancer has an ICD code of C50 and DCIS is classified under D05 and no one seems to die of it. Does C50 breast cancer have a DCIS phase and inevitably some cancers will be found whilst in it? Or are they two distinct things and breast screening picks up breast cancer and DCIS as an unfortunate artefact? Or are they just an unholy muddle created by breast screening?
Yours sincerely
Chris Hiley
And here's the reply
Dear Ms Hiley
Many thanks indeed for your recent letter regarding your invitation to attend breast screening.
You have succinctly outlined the pros and cons of breast screening.
I cannot add anything to the debate but at least I can rest assured that you are in the postion to make an informed decison whether to attend or not.
Yours sincerely
etc.
I have mixed feelings about the reply.
First one: I've never tried a medical consultation by letter before. I don't think it really works.
Second one: I have copied the reply faithfully. I'm not sure if it's a mistype or a snide comment, or ungenerosity on my part that means I particularly notice the bit about him being able to rest assured that I am in the position to make an informed decision. I do wonder if I'm beeing accused of a little bit of 'smart arse-ery'. Or maybe not? Who knows? I'm not bothered enough to pursue it.
Third one: I feel reassured that my thinking is not based on some fundamental misunderstanding.
Fourth one: on the other hand, I wasn't asking the doctor to join a debate - just answer some my specific queries, though I can see why he (he turns out to be a 'he' - I couldn't tell from the first letter I was sent - an interesting omission in a service for women, some of who might really quite like to know - diverse populations etc.) may have suspected that 'something else' was been going on. That must be why he didn't actually answer my questions, just agree that they were pertinent. I think he implies that......
My decision?
It's a decision but I'd hesitate to label it 'informed'. I will cancel the breast screening appointment. I will check through the same thinking again every three years until I'm bored or learn something that means for me that breast screening finally makes sense.
And it is entirely personal - my decision is all about me and is not about labelling all other women fools, or patronising women who have been screened, or pitying women who have been diagnosed with a cancer or DCIS as a result of screening. It is not based on secret knowledge that breast screening is a bad thing but on the feeling that it might not be a good thing. I need information for me as an individual. A population based screening programme is singularly ill equipped to offer this. So, maybe, this time I won't get involved.
I'm terribly interested in bowel screening, as it happens, and will be asking the same things there too - but on current incomplete knowledge I'd be more inclined to go for it. So there! In case you thought I just hated screening or was embarrassed about my body. Nope. Happy to queue up for any kind of colonic 'up periscope', of any frequency, if there's a proven (rather than asserted) life saving advantage, and a lesser risk profile for long term side effects of the screening test itself.
