Interview 29

Age at interview: 55

Brief Outline:

First routine mammogram 1999. Recalled but told mammogram was clear. January 2000, malignant lump discovered. Treated for breast cancer. In 2002, told cancer had been present since 1999 mammogram but had not been picked up.

Background:

A housewife, married with 2 adult children.

She suggests that radiographers should give more care and explanation to women having their first...

I felt that the girl, that very first time, that did it, didn't really appreciate that this was my first time for this. I know these girls are turning people over, one every ten minutes and to notice which ones that it is their first is probably difficult. But just that one time I felt, I didn't know what was expected of me so I didn't know how to stand or how to hold my arm or that sort of thing. I'm an expert at it now [laughs]. 

Did she explain it at all or did you...?  

It, a wee bit of manhandling. A little bit of the move... you know sort of just moving me around to seek the machine. Which she's doing, as I say every ten minutes, but I think just on that first day, a little talking before you do it would be useful.

I think the people who are going for the, it is their first time, should have a red star with their name or something, when they're being passed in to whoever's doing it. After all she's only receiving a list of people, they don't have faces and she may, I mean she probably did say, "Is this your first time? Oh right." You know, but I think they need a wee bit of extra handling to get used to what it's all about. And the machine's an odd machine, I'm sure you've seen one, maybe you've had a mammogram but it's an odd sort of machine. It's not like an x-ray machine and I mean maybe people, unlike me, wouldn't even have seen an x-ray machine. It's an odd way you've to stand and move and turn and that could be explained to the first, on the first visit. 

She is unsure whether to discuss breast screening with her daughters.

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. 

Describes having an ultrasound scan.

Well someone going for an ultrascan, it's really a very simple exercise. And anyone who has had a baby in the last twenty years they would have had experience of an ultrasound. But it's a simple operation of spreading some jelly on your breast or whatever area and sliding something over it. A picture then appears on the screen which whoever's doing it can obviously read and see what it is but it's a very simple experience.

The fine needle aspiration was a painful but quick procedure.

Well the biopsy is not quite as simple an experience. It involves a fine needle being pressed into your breast and poked around really to find where the doctor is looking to get it in, right into the lump that he has found. And that is drawn off, and obviously taken away and looked under a microscope. It is painful, it is painful, there's no two ways about it. But it's over in a few minutes, so it's not too long. 

So you had the biopsy and did you wait there?

Yes I waited, I waited for my results.

More tests after her first mammogram showed that she did not have breast cancer.

The following week I received a letter to say, not to worry but would I return to the breast screening because they needed to do another one? Well, "Not to worry" was not the words I would have used. I worried considerably for the whole week. Went to the breast screening again when I had a biopsy, an ultrasound and a lot of poking and prodding. I became more and more nervous, but at the end of that day the doctor who I saw said in actual fact, she couldn't find what they had recalled me for. It turned out to be something with a very long name, but it was a fatty nodule that they had found. But she said it was not cancerous, nothing to worry about and I stepped out the door that day, saying to myself, "This is the first day of the rest of my life." 

They said that no it was not a cancerous tumour. It was some sort of fatty nodule that wouldn't cause me any bother at all. 

And you should just leave it and it would be fine? 

It would be fine and I would not need to be, one of the things they said to me, I would not need to be called in a year, because people who they were a bit iffy about they would recall in a year. My normal three-year recall would be fine. 

The radiologist who had read her first mammogram had not picked up her cancer.

But she did agree to have someone come and speak to me, who did come, and talked me through each of my mammograms from the very first one that I'd had in 1999. He was then able to point out the cancer which had been there in 1999. But they had not spotted it. I know myself that mammograms are not a hundred per cent. They're only as good as the people who are reading them. 

And he pointed out the cancer in the one which would have been, well in the two that had been taken one week after each other. It was only like a, as the top of a pencil maybe, white spot. And he was saying to me, "Well you see it, how small it is?" But I was saying to him, "But, you are the, you're the expert. I don't see anything." I mean there were just funny black things as far as I was concerned. But he, but then he was the top man looking at them. Obviously the top man wasn't on that day and whoever did read them, didn't see that. But to see it six months later was amazing. Absolutely amazing. 

It had grown that much?

It had grown that much. It, in fact, on those six month ones it was practically taking up half of my breast, on this photograph. Obviously not in the breast but in this photograph it was taking up half the breast. 

Despite her experience of having a false negative result, she encourages women to go for breast...

Did you have that discussion with him, you know, how come it wasn't picked up?

A little, a little. Yes I had a little discussion with him but I really had decided before I went that, if that was the case, there was no point in going down that road. I mean, what was I going to do, sue them? Or was I going to make a fuss or? Because at the end of the day it wasn't going to change one solitary thing to my life. So, I just wanted to know for my own benefit, and perhaps give them a wake-up call that they'd look more carefully at someone else's. It wouldn't help me, but it might help someone else, that was my view on that. 

At one point, you mentioned that you thought, oh mammograms are no good. Were, what was that time, what were your thoughts about?

Well my time, my thoughts at that time were, how did they miss it? How could they have missed it? I could have understood them having missed it if I had just gone for the screening and merrily on my way. But for them to recall me, and still miss it, I felt was beyond belief. That was what I felt. So I felt that mammograms were useless. But I have stopped thinking that. I have stopped thinking that. They are useful for a lot of people. A number of people in the [support] group will say, "They saved my life." They went for the, they were fifty, or whatever age they went. Something was picked up, they had the mastectomy, and they're living normal lives now which would not have been the case otherwise. So I know they are useful and I do know that they're not, they're only as good as the people who are reading them.

I think screening is a really good idea. I encourage everyone to go for screening. I don't, for all the sort, you know, at first I used to follow it up with, "Well, it was useless for me, but it might be good for you." I don't, I've grown out of that, I don't say that now. I encourage people to go and I encourage people who are over sixty, or sixty-five or whatever the upper age is, to go. You know, I say, "Go, make an appointment and go because it's worthwhile." I do encourage people to go. I think it's a good idea.

Feels more reassured seeing an experienced consultant, who checks her thoroughly, than someone...

I followed that up with three-monthly visits to the hospital which were reassuring. That mainly depended on whether you saw the consultant, the registrar or a junior doctor who, I know these people have to learn their way, have to see how it works, but I didn't derive any confidence from a, especially one boy. Unfortunately when you get old you think of them as young boys, who made a lot of fuss about the tattoos I have on my breast, or where I used to have a breast. And he seemed completely fascinated by these. But these had been used for the radiotherapy, for homing in. Now I didn't gain any confidence from my visit to the hospital that day, because I felt, if he doesn't know about tattoos, what does he know about the whole situation. 

You get an appointment for a check-up after having had cancer and you cling to it as, this week it's another, you know, three months or whatever. And you go, and there are fifty other people there, and you are called, and if you get someone who says, "Just lie down on the couch." and they run their fingers over the scar and they say, "How have you been?", and you say, "Fine.", and they say, "That's fine, see you in three months." That does not give you any, me personally, any confidence. I need, and nothing annoys me more, is the doctor writing their notes while they are speaking to me. If they can't spare me the time to look at me when they're speaking to me, I just feel I'm on some sort of conveyor belt and I don't derive any confidence from them. 

If I have someone who is perhaps a registrar, or up further anyway, who takes the time to feel round my lymph or under my arms and round my neck and my tummy. Now, it may be, someone pointed out to me one time, listening to your baby with the thing, doesn't actually tell you anything but it makes the mother feel more confident. And maybe that is the situation with feeling and doing that sort of thing, maybe it's exactly the same. But for me, it gives me more confidence that they have looked and felt and spoken to you and perhaps asked you a couple of questions. And it only takes a few minutes more, just a few minutes more to do that. I feel better after it anyway.