Pauline - Interview 28

Age at interview: 52

Age at diagnosis: 49

Brief Outline: Pauline was diagnosed with DCIS in 2001, aged 49, after her first routine mammogram. She had two excisions, followed by a mastectomy and reconstruction using an implant. She also had radiotherapy and took tamoxifen for two years.

Background: Pauline is a married teacher with one adult child. Ethnic background / nationality' White British

More about me...

Pauline had her first routine mammogram at 49 and was recalled afterwards. After tests, she was diagnosed with high grade DCIS and had a wide local excision.

 

After surgery, Pauline was told that she would need more surgery because there were no clear margins. She had a second operation and, again, there were no clear margins. Her doctor recommended a mastectomy and, after doing some research, she agreed to having it, as well as an immediate reconstruction using an implant and her own nipple.

 

Later, Pauline had five weeks of radiotherapy on the reconstructed breast, followed by one week of radiotherapy on the nipple. She took tamoxifen for two years but, because of side effects, stopped taking it after discussing it with her doctor.

 

Pauline stayed as positive as she could and found joining a local support group helpful. She also found that aromatherapy and reflexology helped her relax. Since her diagnosis, Pauline said she had started eating more organic food, paced herself better, worried less about trivial things and valued her time and relationships with other people more. She had also started doing things she might have put off had she not been diagnosed with DCIS.

 

Pauline was interviewed for the Healthtalkonline website in 2004.

Pauline said that most people are very supportive but some don't really know what to say.

Did you find colleagues supportive as well or not?

 

You got a mixed reaction. Some are, I mean on the whole people are very supportive, but I think people don’t know what to say. I think people find it very difficult to know what they should say to you. So you get the question “Oh, you OK?” But you know they’re petrified you’re gonna say “Well actually,” and they just want to make sure you’re OK but they don’t necessarily want to talk about it [laughs].

 

And I think it is this thing of, if you haven’t been through it yourself, it’s difficult to talk to people. They just feel, I don't know what it is, but it, I think it’s hard for people sometimes. I mean I don't mind anybody talking about it, but I won’t initiate it unless they do.

 

Yeah. Did you find it difficult telling friends? Or did it vary depending on the person?

 

Yeah, I think it varied depending on the person very much so, yeah. If I didn’t know somebody very well I probably wouldn’t mention it, you know, but if I know somebody well then I’d talk about it, be quite happy to. But there is definitely a sort of taboo somewhere and you can sense it from some people and other people you don’t get it at all.

Waiting for her test results was worse than finding out she had DCIS because Pauline thought it...

That, I thought, was probably the most difficult time of everything because I felt there was something wrong but I didn't know. And I didn't know how bad it was, you know, your mind goes like wildfire because you’re thinking of all the possible scenarios. And having had a friend who’d had the double mastectomy I was thinking probably the worst scenario.

 

So in fact when I got there and the consultant said that the results had come back and that they weren’t clear, I did have cancer, but when he then began to tell me what I had, I began thinking oh this isn’t nearly so bad as I thought. In fact you know it’s only in the milk duct, it hasn’t invaded the tissues, so I can’t say I felt relief, but I felt a lot better about the whole situation because I was convinced there was something, and I was sort of thinking the worst, whereas that was not the worst scenario at all.

 

No. Waiting for the results was quite difficult then, did you, were you able to talk to anybody or did you feel that there’s any way that waiting could have been made easier?

 

I think it’s a very difficult time because you’re talking about something that hasn’t happened, so no I didn’t talk to anybody, but I was quite, I think I was quite short tempered during those two weeks.

 

There was no point telling any friends because you’d be telling them about something that might not happen. So I really, no I didn’t talk to anybody about it because I just thought well I don’t want to sort of say “Well I might have breast cancer,” because if you don’t have it, that sounds ridiculous. So no I didn’t really talk about it and I can’t think how it can be made better other than seeing somebody quicker, but then that’s often impossible, and two weeks really actually was quite good.

Pauline thinks that women who are diagnosed with DCIS should be given a little pack with...

I joined the support group in our area, which funnily enough I found out about from Breast Cancer Care, who actually put me in touch with my own breast cancer nurse, [laughs] which I thought was quite amusing ‘cos I, that was the way I found about it, nobody again at the hospital told me. 

 

And this was where, reference earlier conversation, I feel there’s a lot the hospital could give you that I found out about myself. E.g. the support group which I found out about through Breast Cancer Care. The hospital did give me a Breast Cancer Care leaflet which got me in touch with Breast Cancer Care. But there were other things where I think perhaps they could give you the information, a little pack with information about websites, about aftercare like the reflexology they provided after radiotherapy, which I came across purely by chance on a leaflet stand. I feel all those things would make life a lot easier if that was in a nice little pack and handed to you, and you could take from it what you wanted and ignore what you’re not interested in.

 

When would be the best point to have all this information?

 

I think probably initially when you get your pack, I mean certain hospitals do give you leaflets. I think initially you probably just need information about what’s happening to you. But certainly when you get to the point where you are going in for major surgery, I think that’s perhaps where you need addresses, you need sites that you can link on to on the Internet. 

 

And things like the aromatherapy or reflexology after radiotherapy could be given to you at the time of radiotherapy; so that there's a sort of staging of getting leaflets, otherwise you might feel a bit inundated if you got a huge amount. But as and when they’re relevant I think.

Pauline describes having a biopsy, which she found painless. She got the results two weeks later.

You are put in a clamp like a mammogram and then they, first they looked under an x-ray to see where the calcium dots were and then they punched, and it’s more than a needle, it’s thicker, but they punch down on the breast and then this, out it comes and within that tube, it takes a little sort of tube full of tissue and that's what they then analyse.

 

Was this on local anaesthetic, or?

 

Yes, yes. You had an injection just to anaesthetise the area. That, I mean some people have found it incredibly painful, I didn’t really find that too bad at all. A tiny little scar from it and that’s all. And that, in fact when they did analyse that, they did find DCIS in the core biopsy.

 

So did he tell you that there and then?

 

No because that was analysed; they actually gave me an appointment there and then for the hospital. And so I had that and that was two weeks time and they would either have a result for me then or they would arrange for a further biopsy if the result was clear.

Pauline explains why she chose to have an implant and what it involved. Her new breast felt...

I did a lot of research and felt that yeah I was going to have to go ahead. I had time with the breast cancer nurse to discuss whether I wanted a mastectomy without reconstruction or whether I wanted it with reconstruction and what type of reconstruction I wanted.

 

In the end I decided to go for an implant that was pumped up because I didn’t want to have the muscle taken from my back and brought round to the front. So by having a pumping up thing it means they just take the breast off and then they sew it up and it’s flat and then they gradually pump it up. And once it is the same size as your other breast, they then take that one out and replace it with an implant. And that’s stretched your skin, rather like when you’re pregnant, so it’s gradually getting bigger.

 

And I just felt that that was a better option because I really didn’t want my back interfered with as well as my front. So I choice that option. The other question I did ask was “Could I retain the nipple?” And I was told that, because the milk ducts go to the nipple, that there was obviously an element of risk if I left the nipple, so they would be taking the nipple as well, so I said “Fine.”

 

The night before I had the mastectomy the consultant did actually come and see me and say “Have we discussed nipples?” And I said “Yes we have” [laughs]. And he said “Well,” he said “I’ve been onto another hospital and they’ve had a lot of cases of DCIS and they have retained nipples.” And what they do is they give an extra blast of radiation, so he said, “You know, you can retain it if you want to.” Which left me in a bit of a quandary because I was being operated on the following morning. So I discussed it with my husband and I decided to keep the nipple.

 

When you saw the actual implant, was it what you expected? How did you feel?

 

Because I had this pump up version it was water, saline in it, so it was a bit like having a hot water bottle in your chest [laughs]. It was very odd because it rippled. But because I knew that was temporary, I don’t think I was worried one way or the other, you know, I didn’t, I just thought it’s there, you know.

 

How did it feel?

 

Just slightly watery and mobile. And of course because, one thing I was surprised at, you look like you’ve got an 18 year old breast because of course it’s nice and pert, so I do have lop sided breasts [laughs] but that has never really worried me, you know, it’s just one of those things.

 

But since the second implant, which is the silicone one, it’s a lot harder than I thought it would be, because when you feel it in your hand, it’s very malleable and very mobile, it feels like a breast. But of course once it’s in situ, because you’re then, it’s sort of put in like a pocket and it’s behind a muscle to keep it in place, it’s very hard and it’s not mobile at all, you know, it’s a bit like a tennis ball up your front, it is hard.

 

But that, as I say, it doesn’t worry me but wasn’t what I was expecting, I think that’s the difference, I thought I was sort of expecting the same as a normal breast but it’s not, it is a lot harder. And again like a 17 year old, you know, no sag [laughs].

Pauline was very happy with her reconstructed breast and said the scars from surgery were hard to...

I’ve never worried about sort of physical appearance. I know I went for reconstruction but I mean again it’s become a bit of a standing joke because the surgeon always says to me “Now would you like anything done with the other side?” and I said “You’re giving me a complex” [laughs]. And he said “No, no, no I just don’t want you, you know, we can do it, if you would like the other side sort of made like the nice new side,” he said “we can do it.”

 

So I mean he’s just being extremely considerate and knowing that if I was unhappy about it, there is the option there. But quite honestly at my age, I just don’t see the point. And so I’m not worried about the fact that one side sags and the other side doesn’t. I mean it’s just unimportant because I don’t go around with no clothes on [laughs], and it looks fine with bras on, so it’s just not an issue. And I really wouldn’t want to go through an unnecessary operation, I would feel that was totally unnecessary.

 

I would be having an operation, again going back to sort of cosmetic vanity, and I don't know why. I would think God I’m taking huge risks purely for, what for? So for me that would, it’s not a problem. Now for somebody else it might be because we’re all different.

 

Yes. Are there any scars or anything on the reconstruction side?

 

I’ve got a scar at the top where I had the lumpectomies. The actual scar across the breast, I mean he’s an amazing surgeon, there is no, you just cannot see it, it is unbelievable and yet he cut right across the breast and you can’t see it. So really the only scar I’ve got that's visible is the one at the top, with the lumpectomies, and obviously because breast was actually taken out of there, there is pull there.

Pauline feels that her family had all the worry but there was nothing they could do.

It does have a huge impact. I mean I was very positive about it, I didn't, I just thought well you know let's just, you know, nothing you can do about it so get on with it. So I was very positive and suppose you could say upbeat.

 

I was more worried really in a way for the family because you can get on with it, they don't really have a role, other than supporting you and I think for them it's actually really quite, very tough. Because they've got all the worries but there is nothing they can do.

 

And they, they're almost in limbo, having to sort of hopefully say the right things, and I know my daughter who was sort of, she was coming up to AS levels, she'd just done GCSE's, she got almost quite bolshy from the point of view I think that was her way of dealing with it. Because she was obviously worried and didn't want to talk to me about it and worry me.

 

So that was her sort of way of coping, putting up the barriers I suppose. My husband was brilliant, very supportive, I mean he had moments when you know he'd think 'Oh God am I doing the right thing,' but we didn't really as a family ever sort of argue or, I mean he just went along with whatever I wanted, which was great. And again my daughter as well, you know, they were both brilliant really.