Interview 14

Age at interview: 62

Brief Outline:

Attended for routine breast screening since age 50. At 60 was diagnosed with DCIS. Had a mastectomy. Chooses not to attend for further screening mammograms.

Background:

A writer,who is single with no children.

Her mammograms on recall showed that changes in her breast were due to HRT.

I'd had one mild scare on the second or third one, and I'd been recalled. I remember going to the breast cancer clinic in the hospital with great nervousness, thinking that I must have been diagnosed with cancer. They had to take more mammograms when I was at the hospital, and that turned out because it was - they detected that the tissue in my breasts had changed quite a bit from the previous one. But that turned out it was because I'd started to take HRT in between the two mammograms, and that had considerably changed the tissue in my breasts, and that's all it was, so that was a great relief.

After her mastectomy, doctors could find no DCIS in the breast they'd removed.

And then finally I went with my sister, and the surgeon said he was embarrassed because they still didn't have the results. We said, 'why?', And he said 'they can't find what they're looking for'. Even though they've done, now, considerably more analysis than they ever would. And I said 'what are they looking for?' And he said 'DCIS', and they couldn't find any DCIS. They couldn't find any DCIS in my breast that they had removed. I subsequently had two, possibly three, quite long sessions with the pathologist, looking at my own cells under the microscope, trying to understand why it was that they said they'd found DCIS in the original biopsy, and not being able to find any DCIS in the breast they removed. I'm still not really a hundred percent sure that I understood it, but I can't think of any other explanation than they removed from my breast in the biopsy the only DCIS cells there were in my whole breast. They were two tiny spots of less than one millimetre. And I had my whole breast and five lymph nodes removed for that. 

Which is why I'm deeply concerned about being faced with this white spots diagnosis on my other breast, when even when I was diagnosed with threatening, high grade, wide extensive DCIS, in the end, when they removed my breast, they couldn't find it at all. 

Discovered that detecting breast cancer early may not mean less drastic surgery.

So it does raise questions about whether it's [breast screening] really a good thing, because what I discovered, I'm jumping around here, but after I got the diagnosis I went away and rushed around trying to understand about this strange DCIS, to discover that in the medical world it wasn't free from controversy about what to do about it, because it's thought that some, maybe a lot of DCIS, never develops into breast cancer proper anyway. And so the shock of having a mastectomy proposed for some early form of breast cancer, that might not even develop into breast cancer anyway, was just adding to it all.

Feels unsure about having her remaining breast screened and wondered how far she had eliminated...

Now I'm on calcium tablets. Well why couldn't I have been taking these all the time and maybe I'd have never had DCIS in the first place? The other significance about that is, remind me and I'll come back to the environmental factors, let me finish this thing on HRT. Because I'm not convinced that my DCIS would have turned into invasive cancer, and I've removed this HRT risk, I'm hoping, myself, and it can only be a hope, that I'm no more at risk now than anybody else was.  

In your own mind, what would be the pros and the cons in terms of going for a mammogram?  

The con? Forgiving the pun but the contrary arguments against it, which is why I'm not doing it, is that if they find white spots, more DCIS, I still haven't made up my own mind about what I think about this diagnosis. And so I don't want to put myself in the position of having to take a decision about it, until I know what I think about it. 

And against that argument, what thoughts are going through your mind about why should...?    

Well might DCIS, not only DCIS be developing there? And might it be DCIS that will invade, and might there be an invasive lump developing that I'm not aware of? Though I do occasionally, not regularly, I do check my breast. Not in any kind of technical way, but I'm breast-aware. And I haven't actually felt anything. And I suppose in my mind all the time, whenever I do that and there isn't anything, I can see the thought going through my mind - oh it was probably the HRT that did it, and I'm not taking HRT  now, so I should be okay, and I'm past the menopause and all the rest of it. But of course, the longer you get past the menopause the more there seem to be diagnoses of breast cancer, so I'm still confused actually.