Hilary - Interview 6

Age at interview: 57

Age at diagnosis: 50

Brief Outline:

Hilary was diagnosed with DCIS in 2001, aged 50. She had a wide local excision, followed by a mastectomy. She also had a delayed DIEP flap reconstruction, followed by breast reduction surgery and nipple reconstruction.

Background:

Hilary is married and a retired teacher with two adult children. Ethnic background / nationality' White British

More about me...

Hilary went for a routine smear test in October 2001, aged 50. She hadn’t yet been invited for a routine mammogram, so the nurse arranged one for her. After her first mammogram, Hilary was recalled. She was not worried at this stage but, after having several tests, was diagnosed with DCIS. She was told that she had low-grade DCIS and would need a wide local excision.

 

Hilary was shocked that women could get breast cancer without a lump or any other symptoms. She had a wide local excision and went back to work about three weeks after surgery. In April she had another check-up and was told that the DCIS was widespread. Her doctor said that she had low-grade DCIS which he felt could progress. He recommended she have a mastectomy, though she wasn’t offered immediate reconstruction, and said they would also need to remove some lymph nodes (which turned out to be clear). Hilary said that, initially, she didn’t feel too upset about having a mastectomy because her only concern was getting rid of the cancer. She requested a second opinion from an oncologist, who confirmed that a mastectomy was the safest option.

 

About two years after Hilary had had a mastectomy, she started to feel unhappy about being lop-sided and uncomfortable, and was given the option of having reconstructive surgery. She chose to have a DIEP flap breast reconstruction, which involves taking skin and fatty tissue from the abdomen to create a ‘natural’ breast. Hilary said that, up to this point, she hadn’t cried at all but, after surgery for breast reconstruction, felt very emotional. She wondered if this could have been because of the surgery and the morphine she was given to relieve the pain. She benefited from having some counselling and returned to work, but found it very difficult. She felt tired and that she’d returned to work too soon after her surgery. She also felt emotional and found teaching difficult. She took some time off work and, during this time, had further surgery to reduce the size of her healthy breast, matching it more closely with the reconstructed one. She also had a surgical hernia treated and, later, a nipple reconstruction using her own tissue. This didn’t work at the first attempt but was successful second time around.

 

Hilary received counselling for about a year to help her deal with how she was feeling emotionally. She was finding it especially difficult to cope with work. She also felt very emotional about having had a mastectomy and her femininity. Hilary said that the counselling she received helped her explore her emotions and spirituality. She now feels more passionate about life and tries to be kinder to herself. After surgery, she felt like ‘a different person, with an awakening of an inner emotional life that had been hidden or ignored for years.’ In the end, Hilary left her job, which she was finding difficult to cope with, and accepted a medical pension.

 

With hindsight, Hilary said she was very surprised at being recalled after her first mammogram and did not expect to be diagnosed with cancer. She joined a support group and found this very supportive, but there was no one there who had had DCIS. Hilary said she had been ‘very upbeat’ about the mastectomy and just wanted ‘to get rid of’ the cancer but ‘the reconstruction is what floored me emotionally.’ She stressed that she is delighted with her new breast and felt happier after having a nipple reconstruction. She will now attend for routine mammograms on the NHS breast screening programme every three years.

 

Hilary said she is thrilled to have been given the ‘all clear’ and is enjoying being more in touch with her emotions. She is now retired and starting to explore new interests. She said she is indebted to the hospital for the wonderful expertise, care and support they provided.

 

Hilary was interviewed for the Healthtalkonline website in 2008.

Hilary hadn't known anything about localisation beforehand and found it painful.

One of the things that I was going to mention was the wide local excision preparation, which I hadn’t anticipated being as painful really as it turned out to be. I was told that they were going to pass a wire through the breast in order to identify where to cut tissue from and they needed a wire there to sort of triangulate, to be able to remove the tissue because once you’re lying flat and there’s no point of reference. If there were no points of reference, they wouldn’t know what to take out. And you haven’t got a lump or anything. But that was quite painful that. They use something similar to the plates for a mammogram, and they squash the breast so that this, like a criss-cross of plastic coordinates, the grid. And then they take a sample from each of those, similar to the ones they took initially to diagnosis it. And then pass the wire through. And they do give you a local anaesthetic. But it doesn’t, the overall discomfort was there and a little bit of pain. But not to the point where you want then to sort of say that they couldn’t carry on. But it was very uncomfortable. And I hadn’t anticipated that.

Yeah. That was just before you went for the operation?

That was the morning before. Hmm. So they put a wire in and they leave the wire hanging out each side, which was strange anyway, you know. And I think that that was sort of part of the start of me feeling that the breast actually wasn’t so much mine anymore. There was something being done to it. And I think they described it as physical discomfort. But I thought it was quite painful, that. And, you know, with all the other procedures I’ve had and I had a general anaesthetic. But sort of the discomfort afterwards isn’t usually such an acute pain as that was. And I didn’t feel that I’d been told how uncomfortable it was going to be. It was a bit more like a visit to the dentist really. You know you’re [laughs], they only tell you half.

Hilary was grateful to the nurse who set up her mammogram appointment. Though she was an agency...

This nurse, I did manage to track her down because if it hadnít been for her, it could have been another two or three years before I got called up in the general system. And by then things couldíve been quite serious. So, you know, I did manage to write and contact her and thank her. But because she was agency it was a little bit difficult. But she was, I owe a lot to her.

...Statistically I think, you know, one in three get cancer of one sort or another, so and I took the, well I'm lucky to get it but very lucky to have it diagnosed at such an early stage and treated at such an excellent hospital. And a mammogram is what did that. Without the mammogram and without that nurse sending out for an early mammogram, well relatively, I was 50, I think things could have been a lot worse. Well in fact I know they would have been.

Hilary wasn't worried because she'd been recalled after hospital tests before and nothing had ever been wrong.

About a week or so later I got a letter saying something to the effect that it wasn’t clear, that, you know, in 90% of cases it’s just sort of the imaging or whatever. I failed to see at that stage, there was a line on the bottom that said there would be a doctor available. And you know I only read ‘you’ve got to go again’. And I really didn’t think, at that stage, there was anything sinister in the recall at all. I’d had a couple of things in pregnancies with sort of tests, urine tests and blood tests and then they said, “Oh this isn’t clear,” or, “Would you go back?” and that. And so I didn’t think anything about it.

 

Got to the unit with my husband and was totally amazed at, I seemed to be greeted with a sort of a sympathetic air [laughs] as opposed to a sort of functional one. So I thought, “Nice treatment.”

And that was the very first time that you’d gone for a mammogram?

Yes. And that’s one of the reasons why I thought it was a recall and because, you know, perhaps I’ve moved or not done sort of, you know, things right and that. Absolutely, and to just sort of come out like that. I mean I don’t know how they could’ve changed that. But I think possibly the letter that came for the recall was worded in such a way as not to be too alarmist. And I’m so laid back, you know, there was no alarm at all. I think a lot of other people would have thought, “Oh my goodness, something’s wrong here.” Well I didn’t. So that caught me sort of unawares.

Hilary was shocked to have a biopsy and felt that more information in the recall letter might have prepared her.

I was called in to have these other mammograms and a radiologist or radiographer explained that these little white bits were micro-calcifications that could be the start, the early start of cancer and they’d have to take some biopsies. They were like a staple sort of thing, a little, like a thing that pressed, which was very uncomfortable. I mean, I just had to have it done but they took a quite a lot of those and I wasn’t anticipating that on that day at all.

 

And then they said that they would send them off to the lab and that, you know, if the follow up was necessary, no, they actually said they would do follow up, would I like to go to one hospital they mentioned or another hospital? And I sort of, you know, you’ve just been told that you’ve got, possibly got breast cancer and then sort of having to decide which hospital to go to. And my husband and I talked about it for a few moments, it was as much as that, that we had to sort of make a decision and chose the one hospital which I was very pleased in retrospect that we chose it, but then we had a little bit of time outside while something was sorted and I shed a tear. I remember, just one. I didn't cry a lot. I thought, you know, “Sod it,” you know, “I hadn’t really expected this.”

 

I think the things that I found most sort of surprising was the initial, the recall back and being told then that there were, you know, spots, which were usually the signs of early cancer. I hadn’t anticipated that that afternoon at all. And later the emotional response to the reconstruction.

 

And when you had the letter, the recall letter, you didn’t think anything about it?

 

No.

 

And do you feel that that letter could’ve been written differently, or so as not to cause alarm, it was the right kind of letter? Or do you feel that there should be more information about DCIS for women who go for mammograms?

 

Well I think so. I think that the recall letter, myself, I would’ve found, perhaps I would’ve started to look at it more closely. I didn’t see what it was and whatever. But maybe perhaps it would’ve given me more worries. But if there’d been a sort of sentence on there saying that in some instances micro-calcifications are picked up on a mammogram which, although not always, need treatment, in some cases do as they can progress towards DCIS you know. Then I think I would’ve thought, well perhaps I could be in that category and I might’ve worried about it. But I think I would’ve then started to look at what DCIS was.

 

Before you went?

 

Before I went. And I came back and I was absolutely sort of amazed.

Hilary kept a record all the dates and procedures she had as well as photographs of her surgery. They are a reminder of everything she has been and come through.

I took photographs and I think that was helpful. Especially before the wide local, I didn’t take one before the wide local excision, I think I mentioned that, but I did afterwards, after the first one. And then before the other lot. And they’re all just on a separate disk thing for the computer and I’ve got that, it’s just mine. And they’re not anywhere in the public domain. But it’s taken me some time to accept what I lost and what I’ve now got back. And I kept most of the bits of paperwork to do with the hospital for dates and procedures and things. Not that I’ve looked at those things but as a reassurance, yeah, this is what you’ve been through and you’ve come through it. You know. So you had this done and this done and at each stage you’re getting better. And a few people I’ve spoken to who have got rid of everything, they actually found then that, you know, to a certain extent it all became a very sort of cloudy sort of thing. And then they got upset trying to remember.

A nurse examined Hilary's breasts and, because she was fifty and had lumpy breasts, arranged a...

I went for a routine cervical smear in October 2000, yes October 2000. And the nurse … sorry it was 2001. I went for a routine cervical smear and the nurse, it was a different nurse at the doctor’s and she asked me if I did sort of a breast examination. And I said, “Well I do but I’ve got lumpy breasts just naturally, a lot of lumpy breast. It would be difficult, a lump would have to be quite large before I would notice it.” And she’s a rather chaotic nurse, on agency, and I remember vividly that everything was all around and quite messy really, unusual for the doctor’s surgery. And she said oh, she said, asked if she could feel my breast and she did. And she said, “Oh” she said, “Oh they are lumpy breasts.” She said, “Have you had a mammogram?” And I said, “No” and I was fifty. And she said, “Well I’ll send you for a mammogram because you’re eligible between fifty and fifty-three and it might be two or three years before you’re called up.” So I said, “Fine.” And went off and had the mammogram and never thought anymore about it.

Hilary had cording after her mastectomy and some minor surgery to treat it. She advises seeing a doctor about any concerns with the arm sooner rather than later.

I did have a problem with cording so I couldn’t stretch my arm properly. So I went for physio; that didn’t make a lot of difference. I did all my exercises and it was just one of those things. And I had acupuncture provided by the hospital, and that was excellent. And in the end they did a little minor op to snip it under the arm so I could get the stretch back. And that’s fine now. It’s almost exactly the same, it’s probably about quarter of an inch difference. But before it was about, oh about four inches difference. Regardless of how much exercise, it just wouldn’t stretch. It was like a thick band. But I didn’t get any lymphodema. The lymph nodes that they took out were clear, so that was all good stuff. And I went back for a couple of regular mammograms and it healed up. I’ve got a little bit of fluid that collects under the arm, a bit but that’s only minor, its not sort of massive amounts. But it is there, it’s a bit sort of wobbly.

 

I found with the cording that I put up with it for quite a while. And then said, you know, this is really getting to me now because I can’t move my arm, and if I can’t put cups in the cupboard and this sort of thing. And by the time I got through to them, they said, “Well, you know, this is really quite bad, it does need seeing to.” So I think you’ve got to trust in what your own feelings are. And if you feel it’s not right for you, don’t worry about a making a fuss. I think the hospitals generally prefer to deal with things at an earlier stage, rather than later on.

Hilary felt lop-sided with only one breast. She was also getting back ache. After several discussions with the plastic surgeon, she opted for a DIEP flap reconstruction.

So, anyway, I decided to have a mastectomy. I talked it over with my husband and he said he would support me whichever decision I made. And the consultant didn’t talk to me about having reconstruction at the same time. All that he said was that he didn’t work by having reconstruction at the same time. He didn’t offer me another surgeon who might have done that. And to be honest, at that stage all I wanted was to get rid of the cancer. I didn’t really think about reconstruction

…And then after about two years I started to feel a bit odd being lop-sided.

Did you have anything like a prosthesis?

Oh yeah, yeah. I had a very good prosthesis, yes. I’m very big breasted Before the mastectomy I was sort of a 40DD and so to have one side that size and nothing the other side, and I did start to get a bit of back ache because apparently I was starting to be a bit twisted because I was compensating for the weight loss. And I did exercises for that. And I also didn’t like sitting around in just a t-shirt or nightclothes without a bra and prosthesis because it was very noticeable.

 

And it was all right at home with my husband and the two boys. But I didn’t like it. My parents were very upset if they saw it. And likewise the boys were at the stage of bringing friends home, so I couldn’t just sort of chill out for the evening. I had to be sort of dressed all the time. It was what I wasn’t necessarily sort of used to. I was used to getting into night clothes and relaxing for about an hour before going to bed.

 

So I started to think about having a reconstruction. And had about three different interviews where I was told initially, the first one I just you know I said, “Well you know you can take the other one off if you like because then I won’t be lopsided.” The plastic surgeon was very horrified [laughs] and said “I’m sure we can do something better than that.” Because in fact I think it’s a psychological thing, that I’d lost some of the sensation on the other side. I think it was a mental blotting out. Although there would’ve been sensation there, there’s no reason for there not to be a sexual sensation. It seemed that I’d lost a lot of that.

 

And I think as well my husband was very worried about sort of hurting me. And so it seemed to lose a lot of it’s former significance really in that respect. So I think that’s where I came from sort of, you know, taking that one off if that will help sort of, you know. And I won’t feel lopsided then. And he said he could do much better. And we had several conversations.

 

And I was offered the back flap. And I was offered then, that with the sort of saline implant. Then I was offered the DIEP flap. And I’d got, he said, I’ve a lovely big tummy, one of the few people to ever say that. But then there was plenty of fat there. And so he harvested that. I decided to go for that, even though I knew that it was going to be a much longer op than that. I felt that it would be part of me and that’s always been important. So I had the DIEP flap done two years after the mastectomy.

Emotionally, having a reconstruction made Hilary feel more alive and passionate. She also sees her femininity in a different way.

I’d had the mastectomy and emotionally I didn’t feel that I’d, you know I was just sort of very upbeat about it, just great to have got rid of it.

And this was just after the reconstruction itself that….

The reconstructions are what floored me emotionally.

You were happy with the result but that’s when you started maybe…

I woke up from the anaesthetic like it. I was just crying. And I had nightmares probably from the morphine. And I felt different, different emotionally as well as physically. But physically it was a plus. It’s just, you can’t believe going to sleep before an op and waking up with a new breast and being complete. It’s just stunning.

… I really hadn’t anticipated the emotional response after the reconstruction. I love my new breast. I think it’s wonderful. Love at first sight. And it’s just so nice that it’s, you know, part of me.

Did you love it straightaway, without the nipple?

Oh absolutely. As soon as I came round and felt it and it was warm. And it’s there and there’s a lump. Ohh it’s just wonderful.

…But one of the problems, unforeseen, was that, after this emotional experience of the reconstruction, I became much more passionate. Not that I could do much about it for a while because I was a bit sore [laughs] when you’ve had your tummy sort of tummy tuck, it’s a big op. But I’m much more passionate and I think my husband was rather surprised. But I felt emotionally much more, much more alive I think….

And you mentioned that after the reconstruction you thought more about issues to do with femininity and everything else…

Oh absolutely…

…afterwards, even though you had another breast.

Yeah. I’d been quite a tomboy in my youth and I’d always been very much, you know, down to earth and sort of, clothes, I liked to sort of look nice but I never wore much make up or anything, from my teens. I did in my teens but I’ve always been sort of, if it’s comfortable that’s fine, you know, and I didn’t buy many sort of new clothes and I tended to go for things that covered me up. And then when I came through and got this new breast, I wanted sort of strappy tops and, not saying in a sort of promiscuous way, but I was so proud of them. And I’d hidden them away for years, when I had two perfectly normal ones I’d hidden them away.

Hilary was pleased with her breast reconstruction but even happier after having nipple reconstruction using her own tissue. The first nipple reconstruction failed but the second was successful.

I had my second part of the reconstruction, I mean that the other breast was reduced…. I’m still quite big. I’m about a 38, 40 D now as opposed to 40DD, F at times. So I have come down quite a lot. But then, you know you could’ve gone down to a nice 36 something. But then, is that me? And I had wondered about that a few times.

…And then I had a new nipple put on, created out of my own sort of tissue there. And that was done by another surgeon. It didn’t work. After about six months it disappeared. So my original surgeon said he’d do it. And it succeeded. And I’ve had that sorted too.

And in terms of the scars and everything, did you feel happy with the result?

Thrilled [laughs]. Absolutely thrilled. Yes.

And felt comfortable looking at yourself in the mirror, no concerns or …?

No I feel happier now I’ve had the nipple done. I wasn’t that unhappy before. But it just balances it and, you know, with clothes and that. When you’ve only got one nipple, it’s not often that your nipples sort of show. But when they do, you want them both to show or neither sort of thing [laughs]. Just having one is a bit strange. And I love swimming. And it made a huge difference going swimming. Because when I had the prosthesis I was virtually hiding in the cupboards. And I know there’s no need to. But I didn’t, I felt not awkward for myself as much as awkward for other people’s reactions to it…

Yeah. And did you feel sensation come back as before or different?

Well. Yes it’s different. It’s not as sensitive as before. It doesn’t behave sort of, the nipple hasn’t got any sensation at all. The breast feels very similar to what it did before, a slight change in density. But it’s very soft because it was stomach tissue, that’s better than the back tissue.

Hilary felt lop-sided with only one large breast, which caused her some back ache. She had a DIEP flap reconstruction two years after her mastectomy.

I decided to have a mastectomy. And the consultant didn’t talk to me about having reconstruction at the same time. All that he said was that he didn’t work by having reconstruction at the same time. He didn’t offer me another surgeon who might have done that. And to be honest, at that stage all I wanted was to get rid of the cancer. I didn’t really think about reconstruction.

…The mastectomy scar healed very well. And then after about two years I started to feel a bit odd being lop-sided.

Did you have anything like a prosthesis?

Oh yeah, yeah. I had a very good prosthesis, yes. I’m very big breasted. Before the mastectomy I was sort of a 40DD and so to have one side that size and nothing the other side, and I did start to get a bit of back ache because apparently I was starting to be a bit twisted because I was compensating for the weight loss. And I did exercises for that. And I also didn’t like sitting around in just a t-shirt or nightclothes without a bra and prosthesis because it was very noticeable. And it was all right at home with my husband and the two boys. But I didn’t like it. My parents were very upset if they saw it. And likewise the boys were at the stage of bringing friends home, so I couldn’t just sort of chill out for the evening. I had to be sort of dressed all the time. It was what I wasn’t necessarily sort of used to.

 

So I started to think about having a reconstruction. And had about three different interviews where I was told initially, the first one I just you know I said, “Well you know you can take the other one off if you like because then I won’t be lopsided.” The plastic surgeon was very horrified [laughs] and said “I’m sure we can do something better than that.” Because in fact I think it’s a psychological thing, that I’d lost some of the sensation on the other side. I think it was a mental blotting out. Although there would’ve been, there’s no reason for there not to be sexual sensation. It seemed that I’d lost a lot of that.

 

And I think as well my husband was very worried about sort of hurting me or whatever. And so it seemed to lose a lot of it’s former significance really in that respect. So I think that’s where I came from sort of, you know, taking that one off if that will help sort of, you know. And I won’t feel lopsided then. And he said he could do much better. And we had several conversations. And I was offered the back flap. And I was offered then, that with the sort of saline implant. Then I was offered the DIEP flap. And I’d got, he said, I’ve a lovely big tummy, one of the few people to ever say that. But then there was plenty of fat there. And so he harvested that. I decided to go for that, even though I knew that it was going to be a much longer op than that. I felt that it would be part of me and that’s always been important. So I had the DIEP flap done two years after the mastectomy.

Hilary's 19 year old son was terrific. He went to a department store to buy her a larger bra (an errand that his father had been unsure how to accomplish).

My son's a star. When I needed a bigger bra and I was in the hospital and I hadn't been told I needed a bigger one, and I mentioned it to my husband and my son was there, and he was only about 19 at the time and my husband said, 'Oh where do I go? What do I do?' And my son said, 'Oh, I'll sort it, don't worry. He went into the department, the lingerie department at the local big store and, mum's got this, she needs something like this, this and this and no seams and none of this, Bless his heart. But those expandable things are very good as well. That you have on the back of normal bras. So if you've got a soft sports bra rather than buying a new one just for a couple of weeks or so. And front fastening nighties. Sounds crazy but with all those drips and things and they want to look at your breasts so you want something front fastening, then you don't have to keep getting, and you can't pull things over your head.