Ideally, would you like to see screening starting at a younger age than 50 or;

No, I mean I accept that, you know, the medical reasons for not being able to properly image breast tissue in younger women makes it very, very difficult to screen. I mean, obviously, younger women who can feel a lump, it’s entirely outside of screening but from a screening perspective, I think it’s probably the right age. I mean, they’ve extended the age upwards now, at least, which is a good thing. But I accept the medical reasons for not being able to screen at a younger age.

Then over the next fifteen to eighteen years I had another three benign lumps removed at various times, by which time I’d got terribly blas’ about this, and you know, they were always going to be benign, until my mother died of breast cancer, in the days before, of course, screening was available. That was 1982, she was 61 years old, and that concentrates the mind wonderfully;

Because of that I was under more regular screening. I was started on mammograms before I reached 50, which locally is the age at which they do it. They were doing them every two years, and that was fine.

What happened was he [GP] referred me to the breast care unit and to the consultant there, and he wanted to do a family history thing, and I was finding out, wanted to find out about genetic testing, that was what originally started. And by the time the consultant had looked at all the risk history and the factors between the consultant and what theve told us – the fact that I could have had genetic testing to find if I’d got a faulty gene, but if wve got that information, what are we going to do with it anyway? And because genetic testing took such a long time he suggested then to go on the screening program would be the best thing for me. But genetic testing is something I have discussed with my consultant, and it is something that I want to do for the benefit of my own daughter really, and my sister – my one sister in Canada is on a genetic testing program.

I don’t know how they do it, but they just kind of touch base with her every now and then, they’re still looking. I don’t know how it works but they havet found anything that they can say yes, shes got this faulty gene, because shes got three daughters, and shes very aware of this. it’s something that ll want to do, because if there is a faulty gene I need to know for my daughtes sake, because when shes old enough ll get her tested, and then at least shll be in a position to be able to make the decision earlier on, rather than waiting to have it… But we don’t know yet until theve done the genetic testing. It could be that it’s just very, very bad luck that four sisters out of five have had the breast cancer but the chances are it’s more than likely going to be genetic;;

So would you recommend women to go for screening before the age of 50 if they could;

Absolutely, if you can. I mean I just, I met so many women when I was having chemotherapy who were in their early forties and mid forties and I was probably the oldest one of that particular lot that was going through it at the time. And I was only fifty and I think that the NHS must be missing a lot of patients and a lot of cases. And I think that certainly if there is a history of breast cancer in the family, they should be going from a very early age;

And I think routine screenings should start at forty. I really think that were losing too many people younger and theres no need for it. I mean okay we can’t cure breast cancer but we can extend peoples lives and its’ not acceptable, and I know that there are lots of other cancers and I know there is limited funds available;

But surely it’s going to be cheaper to screen and treat earlier than it is to treat later. You know maybe so many families wouldn’t be left without mums, sisters, daughters and husbands, because obviously men can develop breast cancer as well. And I think, I, yes I do, I think it should be definitely given early and I’d like to see it on the NHS yearly from the age of forty. How practical that is I don’t know but that’s what I’d like to see.

Well because there are more cancers being picked up earlier now – and when I say earlier some are twenty nine, some are thirty, some are middle thirties. But I understand the problem of doing screening for middle twenties and middle thirties because the medics will say “the density isn’t there in the breast to pick up the abnormalities’ and I can understand that but maybe from middle forties when maybe women are starting to go through the menopause, maybe that’s when the time is to introduce screening not wait till you’re fifty. You know, round about forty-five then – you know an age where you know things could be picked up, when maybe women are starting their menopause.

I think the most frightening thing about it was that there was no, this wasn’t something that happened to people my age. I didn’t know anyone else who was thirty-nine or even forty-one or forty-three or anyone near my age to call up and say “Hey what’s chemo like?” And will I be all right with this and am I going to die and these sort of things. Everyone I knew that I could think of that had had cancer, breast cancer especially, they died. And that was horrifying to me that I don’t think I ever felt quite as alone in that.

I think also you get very struck by the feeling of, you know “I’m thirty-nine. This doesn’t happen to thirty-nine year old’s. Why me, why on earth, you know is this happening? Did I do something? Was it junk food I ate? Was it the aspirin I took? Was it, you know birth control?” And nobody could say what it was. Nobody. And I think that’s a very frightening part of it. And I think theres also, oddly enough, a sense of embarrassment. I had the sense that I’m the only mother on the school run with cancer. You know, it was something that I felt very strongly in the beginning.

And then after my operation I was – I kind of wanted to find someone that was local, that was Indian, that had had a mastectomy, that was similar to my age. Which a breast care nurse found, she kept records and she put me in touch with a lady that’s local and she rang me up, and she was really useful and really helpful. Shd had a mastectomy and shd had the same chemo that I was having, so it was really good talking to her, and she was very positive.

She had very young children, her son was only three. It was nice to think yore dealing with it, it helps.

I had had one of the mammograms privately in- ten years ago, so sort of when I was about forty and I’d had that done privately through work. Because what they did I worked for a company at the time and Bupa had approached them and said “Look were offering cut rate mammograms to your employees, if they want to take advantage of it” so they offered it out to us. And I think they subsidised it as well and it cost practically nothing at the time. And I thought “Well, I know, you know, sort of that it, I’m probably not, my breast tissues probably not dense enough” or I thought my breast tissue was probably not dense enough, because they say it isn’t until you get older. But in actual fact I think that when I spoke to the lady Radiographers there, they said “If you are from thirty five onwards you can do mammograms” because the breast tissue will take it.

So I’d had this one, so I knew what to expect then. At that time I didn’t, when I had this original one I didn’t know what to expect but when I went back, when I was fifty, I knew what to expect. The only thing I wish I’d done was kept it up in between;

I don’t know whether fifty is old really. I worry about my daughters not having mammograms until they’re fifty. They’re both in their twenties and do they have to wait thirty years to go for a mammogram? I don’t know, I don’t like to force them. Well I couldn’t force them, but I don’t want to encourage them too much. I don’t know, I don’t know how to handle that, whether I should, or shouldn’t or what;