Interview 35

Age at interview: 43

Brief Outline:

Had first mammogram in USA at age 39. Was diagnosed with invasive breast cancer and DCIS, and had treatment. Has annual mammograms in USA.

Background:

A full-time mother and fund raiser. Married with 3 children.

She discusses some of the differences between standard film and digital mammograms.

In terms of taking a digital mammogram, it's no different. It's the same thing.  You come in, they put the glass down on both directions. They flatten you one way and then they flatten you the other. The difference comes in the radiologist's ability to look at the mammogram. It's available immediately.  And they have digitally, they have the capability of zooming in on a suspicious area and looking at it more closely. A normal mammogram X-ray looks just like a bone X-ray, if you've ever had one.  It is a static picture of something. And you have to squint and look at it and hold it up to the light and say is that a fracture?  Whereas with a digital mammogram right there on the computer screen when they are looking at it they can say "Gosh that looks suspicious. I want to have a closer look at that". And they can zoom right in and look at certain factors on it.

She discusses feeling isolated as she did not know women of her own age with breast cancer.

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 there's 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.

Had her first mammogram in the USA because the doctor treating her routinely screened younger women.

I was in America on an extended visit and I had another little problem and went to my mother's gynaecologist to sort that out. And the doctor had said that he had a very fixed rule that women who were thirty-five or older had to have a mammogram with him or he wouldn't treat them for anything at all. And being there and having an annoying problem I said fine, I'll take the mammogram. But I thought it was absolutely ridiculous. I wasn't even forty years old. So I had the mammogram.

Were you there on holiday, did you decide to stay longer?

No. The kids, when they were that age, had quite long holidays and I'd been here, I've been here now for sixteen years so I was here quite permanently. I was fully embedded in the English medical system having everything done here. I had just gone back to America for a holiday to visit my mother and my sister and I would never have had a mammogram here because I was nowhere near fifty. As far as I knew I wasn't at risk at all. I had had my medical exam in October. Nothing had been found. There was no palpable lump. You could not feel anything. 

The only reason I had the mammogram was because this particular doctor had seen so many breast cancers with young women that he had his own rule about it, and I had this niggly little problem that I desperately wanted sorted out and I thought if it meant taking a mammogram to get a medication for it I was going to be very happy to do that. It's the only reason I had the mammogram because I just didn't think that somebody my age with no history of cancer in the family had any reason to do it.  

Was surprised to be called back for further tests and shocked to hear that she had breast cancer.

Came back to England. Didn't think anything of it, just thought it was a really ridiculous thing to do and then I received a call from America that they had found something that was peculiar on the mammogram. It was probably nothing. It was a calcification and that these usually turned out to be nothing but that they felt quite strongly that it should be looked at by a breast surgeon. So I, it never even occurred to me that this could be real. I thought it was a mistake and absurd. I had no idea that women my age actually got breast cancer and if they did I thought it was entirely because of a genetic predisposition to it. 

I then went to a breast surgeon expecting him to look at the mammogram and laugh and say don't be absurd, you're fine. Go away. And in fact that didn't happen. He looked at it and said, you know, I think you need to have a biopsy, it will be a small surgery and that was a complete surprise. But I still, I don't think it still hit me that this was a true possibility.    

We were supposed to go back three or four days later for the results of the biopsy and I fully expected it to be absolutely nothing. Instead he called my mother and told her that it was cancer and my poor mother was on her own completely when she found out and she had to come and meet me somewhere. 

We had an appointment to meet up for lunch and during the course of lunch she just burst into tears and said 'You know the doctors called and it's cancer' which was to me completely, completely unthinkable. It just didn't seem a possibility.

Prefers to have her mammograms in the USA and feels anxious and vulnerable before having them.

I follow, with no surprise, I follow the American protocol on this. And I do it in America because there are more digital mammogram machines there. There are more people reading them and they were the ones that twice picked up the cancer. So I go for an annual mammogram, yes, which is a digital mammogram. And then in addition to that I go six months later for an ultrasound of my breast in the States as well because they have shown that with ultrasound, often ultrasound can pick up things that a mammogram misses. And even if you have breasts that read very well with the mammogram if you, you really shouldn't have more than one mammogram a year and if you go for an ultrasound half way through that year you're having another look at what's going on in that breast and making sure that nothing else has come up or nothing else needs to be looked at. You are not going unchecked for the whole year.

How do you feel when you go back every year for a mammogram? Are you anxious about it or you try not to worry'?

I think everyone is anxious. You know, it always puts you back to a place where you were absolutely vulnerable and you realise all the laws of the world apply to you. Anything could happen to you and actually did. So I think I, you know I feel very vulnerable. It brings back all the memories of gosh, what. I remember when I was sitting here. You're also sitting in doctor's offices and you are looking at women and you see the terror on their [laughs] faces and you still relate to where they are at and what they are going through. And I think that's always a little difficult. 

If she'd known that younger women could get breast cancer, she would have had mammograms sooner.

What amazes me is that, you know, we have the capabilities with mammograms today to pick these up so early and if you get cancer early, particularly breast cancer, it's a completely survivable thing. I mean if I had had a mammogram earlier I wouldn't even have had the chemo. So I'm quite strongly for mammograms.

I think had I been aware that women my age and the number of women my age get it with no history whatsoever, I would have happily paid and gone privately here, to go and have a mammogram on an annual basis. I would, I was lulled into a sense that it didn't apply to me.  

What would you say to someone who was invited for a mammogram and, because of what they'd heard or read, wasn't sure about going? 

I would say you are your own best advocate. There is no doctor, no healthcare system, no friend, no relative, no husband that's going to care about you or help the way that you can. And that, I would say, don't even wait to be invited. Take this into your own hands. You have absolute control of this. You can complain about the healthcare system. You can complain that you are not invited until you're fifty or that you only get one every three years or you can take it in your own hands and say this is my life and my health we're talking about. I want a mammogram. 

Says that breast screening saved her life.

And it [mammogram] quite literally saved my life because when my pathology report came back that my tumour was quite small and couldn't be felt on examination even by a skilled breast surgeon. They, my doctor said to me that if you had waited until this lump was large enough to be felt on examination or discovered by you or your partner, there would not have been a lot that we could have offered you because as small as it was, it, especially in young women it's quite aggressive. So it was a complete stroke of luck that it was found.