Interview 28

Age at interview: 52

Brief Outline:

Had first routine mammogram at age 52. Was diagnosed with DCIS. Questioned need for surgery. Researched alternatives and sought counselling. Decided to accept mastectomy and reconstruction 6 months after diagnosis.

Background:

A teacher, married with 2 adult children.

More about me...

See more clips about this interviewees experiences of Ductal Carcinoma in-situ (DCIS).

Did not feel anxious when she was recalled as she didn't think there would be anything wrong.

While I'd been on holiday they'd obviously recalled me for a check and again I just assumed that was a mistake. So they offered me another appointment and in fact I rang them up and got a sooner one because I thought well maybe it's better to know sooner rather than later. But that was still, I still didn't really believe it was anything more than a problem with the x-ray or whatever.

I thought well this is just a mistake, there is, there has been some glitch with the process. Again it wasn't going to be breast cancer. In fact I was joking with them because I have very small breasts and I just kept saying "Well they couldn't find anything on the mammogram, that's what it was, there wasn't a breast there, I'm too small."

Had not heard of DCIS before her own diagnosis.

So by then I was worried and you know I'd rung my husband and he had quickly looked on the Internet because they'd mentioned the word micro-calcification and they'd said that that could mean benign, it could be fine. But he looked up a site, he looked up some sort of site describing it and he came home more worried than I was. I was slightly rattled but he had seen that micro-calcification often did indicate a presence of cancer cells. So it's a, I don't know whether the [screening] literature really did prepare me very well. Thinking back I don't think it did but I also don't think I had the eyes to see it at the time because I felt it just wouldn't apply to me. 

The day that we received the results I was told that I had DCIS and they explained very briefly what it was. 

Says she would not have surgery immediately if she had DCIS again.

But I have thought, because I'd been told that my risk of developing DCIS in the other breast is now greater than if I hadn't had it at all, I think three times greater, I have thought - although I think I would go for screening of the other breast - if they tell me I've got DCIS, now I've understood the condition a bit more, now that I've demonstrated to myself that to delay six months didn't matter if it still wasn't invasive, the same could be true. And I also have a starting point because I know that that breast, when that breast was clear, because my other breast, it was the first mammogram, I had no idea how long that DCIS had been there. Well I will know this time.  

So it would be my intention, unless there was very strong, there had been further research and evidence to the contrary, but if they find DCIS this time I will be able to say "Well I'll wait and we'll see or we'll perhaps go for a second mammogram in a couple of years and we'll see if things have changed much, because its likely to be very slow moving and I could afford to wait." And I suppose I've just proved to myself that I could live with the uncertainty of that too because if I became too troubled by it, it would have to, I would have to reconsider. I think that would be my hope.    

But I think now I would make that choice for the other breast but I wouldn't necessarily go down the path of instant surgery, in fact I'm sure I'd wait and see whether a new treatment by then had been developed or whether my risk was very small.  

She felt fit, healthy and not at any risk of breast cancer and went for screening out of curiosity.

I went for my first mammogram, I was called for my first mammogram and I must say, looking back, I was incredibly naive about it. I went really out of curiosity because I'd reached the age where I knew you had screening, you had mammograms and we had talked about them and I ended up in it innocently because I really went to find out what it was like because I felt so certain that I didn't have any form of breast cancer. 

I didn't feel myself to have any of the risk factors that I knew about at that stage. I'm quite small so I knew that overweight people were slightly more at risk, there's no family history. I had breast-fed my children and all these things I thought put me out of the risk category. And because I didn't feel myself to have risk factors I thought I was safe from breast cancer and I realise now that was an absurd assumption. But I somehow thought that if you weren't at risk you were safe. So I only went out of curiosity, I didn't really go because I had considered I would be affected. And as a result I don't think I read the screening literature particularly carefully. I just went along.

Says women diagnosed with DCIS should allow themselves time before making any treatment choices.

And if it is DCIS I think I would say don't agree to anything until you're ready and make yourself ready by whatever means you feel you need. It might be counselling or it might be research or it might be talking to friends. Take, don't feel as I did very strongly, bullied is too a strong word, but certainly railroaded on to a process that I wasn't ready for. And I think its important that you are doing it because you've decided to do it and not because you, if you agree to a mastectomy, you decide that yourself. And it's not just because the doctor, the weight of medical opinion, the authority of the doctors pushed you in to that decision before you are ready.