Di - Interview 32

Age at interview: 52

Age at diagnosis: 52

Brief Outline: Di was diagnosed with DCIS in 2003 after her first routine mammogram. She had a mastectomy and LD flap reconstruction six months after diagnosis.

Background: Di is a married teacher with two adult sons. Ethnic background / nationality' White British

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Di was diagnosed with medium grade DCIS in 2003, aged 52, after her first routine mammogram. She was shocked at the diagnosis because she had had no symptoms and did not fit any of the risk categories. Di was particularly shocked to hear that she would need a mastectomy, even though DCIS is precancerous, and felt there was no choice involved.

 

After her diagnosis, Di did a lot of research into DCIS. She said she felt so unsure about having a mastectomy that she decided to wait, do more research and have time think about it. She questioned the need for surgery and researched alternatives to it. During this time, she also had some counselling, which she said was ‘very, very helpful and it helped me confront the reality of mastectomy.’ Di said that, although ideally she would have liked to have been monitored through routine mammograms instead of having a mastectomy, knowing that she could have cancer was extremely worrying and she lost a lot of weight. 

 

Six months after her diagnosis, Di decided to accept a mastectomy and immediate LD flap reconstruction, which involves moving a flap of muscle and overlying skin from the back of the body to create a ‘natural’ breast.

 

Di felt that the NHS breast screening leaflet she had read was ‘misleading’ because it did not give any information about all the conditions that could be found through breast screening. She had never heard of DCIS until her own diagnosis and felt that, if she was diagnosed with it in her healthy breast, she would consider having it monitored by regular mammograms, ultrasound or any other appropriate method rather than having surgery.

 

Di said she would have liked more information about breast screening beforehand and to have known that breast cancer could exist even without a lump.

 

Di was interviewed for the Healthtalkonline website in 2004.

Di's reconstruction is still settling into position and looks better than she had expected.

When you did look at your surgery, your reconstruction, did you feel quite pleased that it wasn’t as bad as you expected?

 

It wasn’t as bad as I expected. And it was nowhere near as bad as I expected originally. Technically I think its miraculous, I think its simply amazing how they do it and what can be done. Personally, well I’ll just have to wait and see because its not settled yet in to the position that it will finally drop to, the tissue hasn’t really spread, I won’t know until 6 months how that’ll look. And I can’t imagine I’m going to complain, its certainly good enough.

 

But they told me all along that they didn’t think, even though I had very small breasts, because I’m quite slight, they said all along they didn’t think they would be able to make the other breast as big as the existing one. And so I’ve been prepared for that. In fact they found much more tissue than they thought they would, so what I have is a breast slightly bigger than the other one which is not something I’d ever dreamed of [laughs], it will settle and probably shrink over time, so that’s probably helpful.

 

But at the moment it means that there’s obviously a mismatch even though in clothes I’m fine, in the mirror its odd. And the, and it does, I think the most, worse than the appearance is the texture. They told me that this breast would be harder than my other breast because it would be using quite a lot of muscle which is a different texture to breast tissue, and it is much harder and much lumpier. I did, I thought it was going to be a bit harder so it does have a very different feel to the other breast.

Di couldn't believe she needed a mastectomy for a precancerous condition that might never develop. Doctors were unable to answer the questions she had until after surgery.

The day that we received the results, I was told that I had DCIS and they explained very briefly what it was. That technically it was pre-cancerous which was a relief and in the next breath they said “So we’re going to offer you a mastectomy,” and that was appalling. Because you assume that if something was pre-cancerous, they can do what I believe they do with cervical cancer and you know just zap those cells.

 

And I must say the bottom of my world dropped out at that moment, so that was a very difficult moment, from having a month earlier felt completely clear of any risk at all to being offered a mastectomy for something that wasn’t even truly invasive cancer as far as they knew.

 

And in that fortnight I did a lot of research too on the Web about the condition and realised that it wasn’t cut and dried, that some people were beginning to ask whether surgery was necessary always but that the evidence wasn’t there, no one could actually answer my questions, even when I went back for the subsequent appointment I had loads and loads of questions but they could not be answered.

 

And that made it even more appalling to think I was going to have a mastectomy when I couldn’t make a clear choice because the answers that I needed - about how long would it take for this to develop, how dangerous are these cells, what is exactly the spread in my breast - none of those could be answered. They could only say “We have found what we’ve found, there may be more but we can’t tell until we’ve removed your breast and we can’t tell whether it’s invasive until we’ve removed your breast.” And that’s appalling and in fact I refused at that point to go ahead. I felt I’d been well railroaded into a surgical procedure and so I said I would wait. Which I don’t think was approved of really, I felt a bit alienated then because people don’t step off the tracks and I said that I would.

 

So at that point I said that I thought I needed thinking time and sort of set myself a target of getting to Christmas and beyond because that would have given me three or four months to do some more research to think things through to see if I could put my faith in any complementary strategies, to talk to people. And to see a counsellor because I felt absolutely floored by the diagnosis and I thought if I went into and prepared myself mentally then I could, because at that time I was talking about this in terms of, I was talking about mastectomy in terms of a mutilation and I couldn’t see it as, I objected to it being called a treatment, to me it wasn’t a treatment, it was almost the opposite.

Talking to a counsellor and a woman who'd had an LD flap reconstruction helped Di think more positively about reconstruction. She had less scarring than she thought she'd have.

One of the books I sent for or, yes I sent from one of the charities about reconstruction, also showed really quite alarming pictures of breast surgery reconstruction, they were surgical pictures or medical pictures. They weren’t pictures of fit women with taut, bronze skin showing they were proud of their bodies even though they were scarred. They were women of all shapes and sizes with sort of cream and purple skin and bruises and fresh stitching, and I thought that was appalling.

 

And so they actually, I can remember saying to my husband “Well you look at this book because it just turns my stomach.” And that was the stage I was at really, I just found the idea of surgery dreadful.

 

So a counsellor was very good in getting me to visualise more positive images than that and helping me get things a bit more in proportion about what the final result would be like. And in fact the final result was far less scarring, on my front anyway, than I would have envisaged, even though I’m a bit perhaps uncomfortable because I’ve got quite a big scar across my back. But, you know, that’ll improve and I’m not very far from the surgery yet so that will come down to nothing.

 

It was a reconstructive ward, all sorts of things were happening and there wasn’t anyone else in as far as I knew with the reconstruction. They were talking about one other lady in the side ward, because she was in that ward I never met her. And she’d had I think a different form of reconstruction.

 

Funnily enough there was one lady who had sought me out who had been in the neighbouring bed when I was admitted and she returned to a clinic and asked to see me. And she’d had a reconstruction two years previously and she’d just been in for a little bit of tweaking I think on the day I was admitted. And she sought me out, it was terribly kind of her, and very reassuring to say that it would be all right in the end really. And she was much younger than I am and vigorous and fit and she helped redress the balance really given the pictures I’d seen in the awful book about reconstruction. And she was attractive and obviously being fit mattered to her too. So that was very helpful and she gave me her phone number, so that was nice.

 

Yes. Did you phone her?

 

No, but I’m going to [laughs].

Di said she had no idea how painful her arm would be after surgery. It has lessened over time and she hopes she will be able to do yoga properly again soon.

I wasn’t prepared for the amount of arm pain I’ve had, no one actually told me when I woke up from the operation, my arm was a lot less painful than it is generally now. And I wasn’t prepared for how long it would take for my arm to be able to move really freely without pain. I’m still not at that stage yet. And fairly annoyed at still having to take quite strong painkillers for it because I don’t like pills. I don’t like having to rely on pills.

 

But, on the whole, I believe that its going to go and I believe I will get back to fitness and I will find ways of compensating for the bit of lost muscle, its not going to affect me too much. Because what I’ve been really anxious about doing again is yoga, and you need such a good range of movement for that. And even though in normal life, the bit of muscle they took doesn’t matter but in yoga it does because you need control and strength and flexibility and that bit of muscle had a purpose. So I feel threatened about that but I feel I’ll work at redressing that.

Di didn't worry when she was recalled because she didn't fit any of the risk categories for breast cancer.

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.

 

We then went on holiday almost immediately and I was amazed when there was a letter saying “We’ve recalled you and you’ve missed the appointment.” So I rang up and at that stage I thought well this is just a mistake, 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.”

Di had been fit and healthy and was shocked to hear she would need a mastectomy for a precancerous condition. She was being given lots of information but could hardly take it all in.

The day that we received the results I was told that I had DCIS and they explained very briefly what it was. That technically it was pre-cancerous which was a relief and in the next breath they said “So we’re going to offer you a mastectomy,” and that was appalling. Because you assume that if something was pre-cancerous so they can do what I believe they do with cervical cancer and you know just zap those cells. And I must say the bottom of my world dropped out at that moment so that was a very difficult moment, from having a month earlier felt completely clear of any risk at all to being offered a mastectomy for something that wasn’t even truly invasive cancer as far as they knew.

 

I think at that point they asked, I then spoke to a nurse, a breast care nurse who I must say I didn’t find that helpful because it was, they were racing on with details of when the operation would be, what I would need to take into hospital. They gave me leaflets about radiotherapy and underwear for prostheses and that really was much too quick for me. And I felt quite horrified and quite repelled by the whole process. So they gave me an appointment for a fortnight so obviously I could do my thinking.

If Di was diagnosed with DCIS again, she would prefer not to have surgery straight away but, if possible, to be monitored by mammograms instead.

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.

 

I think I would like to know if there is DCIS there because I recognise it brings a greatly increased risk of breast cancer. Now that I know that it wasn’t there on the first one I have a time scale for it, so I would be able to say I would like to wait till the next screening or “Maybe you’d like to screen me again a little bit sooner than the three years.” And that way I can find out whether it seems to be developing. And in that time maybe a little bit more will be known about its development path.

 

Or maybe more will be known so that they know it is vital to act on it immediately, in which case if they can persuade me of that then that’s fine. So I think I would go, I don’t think I would take the risk of just not knowing because I’ve been told I’ve got an increased risk of it reappearing anyway.