Hazel - Interview 26

Age at interview: 69

Age at diagnosis: 57

Brief Outline: In 1991 Hazel had a wide local excision, after which she was diagnosed with DCIS. She then researched DCIS and breast screening and chooses not to have routine mammograms.

Background: Hazel is widowed and a retired business woman with two children. Ethnic background / nationality' White British

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Hazel re-wrote this section and talks about her experiences in her own words.

 

Having had malignant melanoma in 1986, when Hazel was invited for routine breast screening in 1991, aged 57, she thought it would be sensible to accept. She was then recalled because an abnormality had been observed on this first mammogram. She agreed to undergo a wide local excision.

 

DCIS was diagnosed. Hazel had never heard of this term before, but discovered that little was known about this condition, and that there was considerable uncertainty about how to treat it. She was invited to join the clinical trial comparing various possible treatments for DCIS after surgery. She declined. Not only was the provided information inadequate for her to make an informed decision, but, on further investigation, she also felt that the wide range of treatment arms for a condition that encompassed a wide range of types of DCIS with different potential to progress was unethical and that trial was ill-conceived.

 

Hazel took tamoxifen for 17 months but, after discussion with her doctor, stopped taking it because of unpleasant side-effects. After further thorough research about trials and mammographic screening, having discovered its potential to lead to over-diagnosis and over-treatment, Hazel decided not to attend for further mammograms but to rely instead on being sensibly alert to any changes in her breasts that might warrant further investigation.

 

She came to realise that it was essential that any woman being invited to attend for breast screening should be able to have all the information necessary for her to make a properly informed decision whether to attend or not. This should include clear presentation of potential harms as well as potential benefit, based on latest available evidence, including the one in five potential to be diagnosed with DCIS through screening, and then undergo invasive interventions that can follow, maybe unnecessarily.

 

Hazel was interviewed for the Healthtalkonline website in 2004.

Hazel declined to take part in a trial because she didn't have the information she needed. She felt doctors didn't know enough about the best way to treat DCIS.

He then said, “well, there was a trial investigating the management of this condition.” I didn’t know then but I quickly found that one in five women who are diagnosed with cancer have this wretched borderline condition of ductal carcinoma in situ. So it’s not an insignificant number. If they have 10,000 women with cancer a year, they’re going to have 2,000 who’ve got this peculiar thing. And furthermore, this isn’t one thing, it’s many things. It’s got sub-sections, some of which are more, how can I say? They’re going to be, cause you more trouble. Others, well if you hadn’t known about it, you’d have gone to your grave not knowing you had it and so they’re not going to cause you any problem at all. So there’s a huge range of possibilities with DCIS which, again, is not conveyed in the literature but which I found out in the 2 weeks that I was given to go away and think about whether I was going to say yes or no to the trial.

 

Again, when I went into overdrive to speak to medical friends I knew to say, “hey, what is this thing?” But the shock of feeling so ill-prepared to make a decision and realising at that moment that you couldn’t make a decision because, what had you got to make a decision on? Precious little. And then going away to find out what you could in the fortnight that you’d been given, to realise that then that there were all sorts of things you didn’t know, like, what about the particulars of your own case? You hadn’t been told those. I didn’t know how big it was, I didn’t know how big the margins were, which is very crucial in ductal carcinoma in situ. I have to confess I had to work out what a margin was because it’s not immediately apparent to you that they chop out a lump and where is the nasty bit in the middle of that lump? So margins are very significant. How big was it? Was I oestrogen receptor positive or negative?

 

The 4 choices in the trial and the trial was to look at the management of this condition to prevent recurrence, didn’t even look at survival. And I can assure you that if you’ve just been told you’ve got carcinoma, the thing that pops into your head quick as a flash is, oops [laughing] how long have I got, you know? So, it was purely to look at the management, purely to see what to do when you’ve got this condition. What did you ask me? I’ve forgotten.

 

What did they want to do?

 

What did they want to do? Ah yes, that’s right, and I’ve gone back to the trial because this is what they wanted to do. They wanted to say, “will you join the trial?” So, obviously if I’d said yes, it would have been the trial. If I’d said no, they would presumably have, I don’t know what? What do you do if you don’t know the management of something? I mean, again, huge conundrum. If they don’t know, and they’ve just told you they don’t know, what are they going to do if you say you don’t want to join the trial because it doesn’t make sense, really, does it?

 

So you’re in as much of a pickle whether you do join the trial or whether you don’t. And the trial options were' nothing further; a full course of tamoxifen, 5 years; a full course of radiotherapy or tamoxifen and radiotherapy. Now, that to me seemed a very bizarre choice. The first thing that flashed into my head, bearing in mind that at that time I was as ignorant as the rest of them, I thought, well do they know how serious this thing is or don’t they? I mean, if they’re offering me nothing further compared with the whole works, how serious is this? Do they know how serious it is?

Hazel doesn't go for breast screening anymore because she feels that, if DCIS was found again, doctors still wouldn't know if it would progress.

Since, I can’t remember which year, but certainly for many years I haven’t had another

mammogram because do I want to find ductal carcinoma in situ you again?

 

Bearing in mind that most breast cancers are found by the women themselves anyway, and bearing in mind that I know a thing or two now, what is the window of opportunity for finding something that might be significant? I prefer to take a more sort of sane and balanced view about going and looking for trouble. So either I will or I won’t, if I get a recurrence, find it in sufficient time. 

 

It depends upon the sort of cancer I may or may not get. It might be a tiny, aggressive one, which will be curtains anyway so what good would a screening have done? It might be another ductal carcinoma in situ, which will take another 30 years to get anywhere significant so, bearing in mind how old I am [laughs] does that matter? I think not.

 

So, and my philosophy is today is the day that matters. You know, be reasonably sensible about what’s life but don’t go looking for trouble and don’t think you can guard against all the uncertainties and quirks that are going to go and flip you round the ear because I’ll probably die of double pneumonia or something when it comes to it [laughs].

Hazel would have liked a lot more information before going for breast screening about what it can and can't find and the areas of uncertainty.

I would have liked to have seen a leaflet that set out what screening could and couldn’t do. What the areas of uncertainty were. How certain they were that mammography was a good thing, because there was evidence to draw on there and we won’t get any more evidence than the evidence that we’ve got that has been worked and re-worked which is the cause of all this controversy. I would have liked to see some basic facts about, well not necessarily in that leaflet but I would like to have been led, if I was the person and, as you’ve judged I am that sort of person, if you’re the sort of person that wants to find out more, where I could go to find out.

 

For example, the sort of stuff that’s in the report that comes out annually from the NHS Breast Screening Programme in which it sets out, year after year, they know how many recalls they’re going to get; they know how many biopsies they’re going to make; they know how many are going to get ductal carcinoma in situ. The percentages haven’t varied a great deal over the last few years. In other words, they know all this stuff. They know that inevitably there are going to be huge numbers of women recalled, many of whom will be sent home with nothing but we all know what that can mean. It doesn’t stop there for the woman because they’re not going to forget it, are they? They’re going to think about it and think about it.

 

So I would like to have seen, or been led to, a more factual rundown of what screening is. But most of all it should have started off by telling me in the first place what my risk of getting breast cancer is because if I don’t understand or don’t know or don’t think to ask, “hey hang on a minute, what is my chance of getting breast cancer?” Is it worth it? But if you don’t know what the risk is, you’re not, probably, going to think of even asking about it.

 

How I wish I had been given with my information leaflet the simple graphics that there are available which set out, at a glance in little blocks of a hundred smiley or sad faces, what screening can mean for people. In other words, you set out what are the results if you don’t go for screening and what are the results if you do go for screening. And, as I know from people who’ve been shown these, they are quite shocked at the full effect of what it can or might mean if you do go. I would say that that graphic, simple graphic presentation of what screening means, it’s not perfect because there’s areas of uncertainty within the graphics which is acknowledged because we’re not certain. We cannot separate out the benefit of screening from all the other parameters that have affected which direction breast cancer mortality is going in.

 

But I would say that for many people a visual representation rather than a whole lot of ghastly statistics, which switch people off quicker than anything, is the quickest route to describing what screening can and cannot offer people so that they can make up their minds.