Linda - Interview 3

Age at interview: 54

Age at diagnosis: 53

Brief Outline: Linda was diagnosed with DCIS in 2007, aged 53. She had a wide local excision, followed by a mastectomy. She was also prescribed Nolvadex for five years.

Background: Linda is a married teaching assistant with one adult child. Ethnic background / nationality' White British

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Linda had her first routine mammogram at the age of 49 and the results were normal. She had her second mammogram three years later in 2007 and was recalled, though wasn’t concerned at this stage.

 

After further tests, Linda was diagnosed with DCIS. She had a wide local excision shortly after the diagnosis, for which she stayed in hospital overnight. After surgery, she was told that her results showed she would need a mastectomy. Linda was very shocked to hear this and felt she had no choice and no control over how things were going. She was offered immediate reconstruction but would have had to travel to a hospital some distance away from her home and family. She also chose not to have breast reconstruction because it would be a long operation and she had already had four operations in two years for various other health problems.

 

In June 2007, Linda had a mastectomy and was in hospital for two days. She felt very strongly that she had had no choice about having it and very much that ‘everything is taken out of your hands’. Some lymph nodes were also removed and were all clear.

 

Linda was prescribed tamoxifen but felt she wasn’t told why she needed it and, again, that all choice and control were taken out of her hands. She felt very unwell on tamoxifen, including feeling nauseous and having stomach pains, and looked on the internet for more information. Linda found the breast cancer websites very helpful and, on one of the breast cancer forums, other women had recommended Nolvadex (tamoxifen citrate). After discussing it with her GP, Linda switched from tamoxifen to Nolvadex and has had no problems since. She will be taking it for five years.

 

Linda gets upset when she looks in the mirror and, at first, felt that using a prosthesis took a lot of getting used to. She would like reconstructive surgery in the future, after she has finished her five-year course of Nolvadex and feels more reassured that her remaining breast is healthy.

 

Linda said she’d had no symptoms at all and that, had she not attended for a routine mammogram, she would never have known she had DCIS. She felt that, if more women knew about DCIS, they might attend for routine breast screening. 

 

Linda explained that her two main concerns have been' firstly, the importance of going for a routine mammogram and, secondly, the lack of control she felt over her own body when it came to decisions about treatment.

 

Linda was interviewed for the Healthtalkonline website in 2008.

Linda was having worrying side effects with tamoxifen. After talking to other women on the internet and her GP, she switched to Nolvadex.

I started on a generic tamoxifen, and I will say I was very poorly, very poorly on it. Not everybody is poorly, I was very sick, it was almost like being pregnant. I was very sick, terrible stomach pains, absolutely feeling awful, just general feeling of not being well at all. This went on for three months. I didn’t know who to turn to, to speak about this, and so I went onto the breast care website and in writing to other ladies, they recommended, nobody officially recommended, to go and try Nolvadex, which is a purer form. Okay it’s 50 pence more, it’s 50 pence more than the generic one, but I pay for my prescriptions, so I felt if there was any problems that you know it shouldn’t really come into it.

 

So I went to see my GP, and I said would I be allowed to go on the Nolvadex as I heard it’s purer and better for you. Actually there was no qualms, no qualms at all. Yes, if I’m being poorly, then right away yes. I got better service from the GP than I did, and the aftercare, from the oncologist and the breast care nurse. So yes I was put on Nolvadex, and I would say within two weeks of taking this, I was a lot, lot better. And now I’m fine. I have had had problems with heartburn but I think possibly that’s because of the weight that you put on with the tamoxifen. But I’m absolutely fine now. I’ve been on it seven months now, and I’m so much better, absolutely so much better.

Linda felt shocked and numb at the thought of having a mastectomy. She felt she had no choice and no control over the decision.

She [doctor] did warn me that, if the calcifications were what they call high-grade, there’s three grades, low, medium and high, that there would be a possibility of a mastectomy. Well I couldn’t understand this because you hear of people who have had a lump removed, but haven’t had their breast removed, and I’m thinking, “Well, if this is pre-cancerous, why am I having this mastectomy?” But of course she didn’t know at this stage whether I would be high or low or medium grade. So it was about a week later actually that she came to see me, and I could tell by the look on her face that all wasn’t well, and she sat down and said, “I’m really sorry but they are high grade and the only thing we can offer you is a mastectomy.” And I could not believe this, I thought well, this is crazy, it was like an out of body experience, she wasn’t speaking to me, she was speaking to somebody else, this can’t be happening to me, you know.

 

So she sat there and I said, “Well surely there’s got to be an alternative.” But again it was all taken out of my hands; I had no control of what was going to happen to me. All she kept pushing for and I’ve realised afterwards, why she was, or why they were saying this, that I had to have a mastectomy, that there was no option.

 

She did sort of mention in passing that if I was totally against this, then they would possibly give me an intense course of radiation, but they couldn’t be 100% certain that they would get, or kill everything off. So really I had no choice, and this seemed crazy to me, absolutely seemed crazy. So I just said well okay, there and then. She did say of course, “You know talk with your husband and your family,” of course my husband just said, “Well get rid, get rid right away.” You know, and then that’s it as far as he was concerned.

 

About two weeks later I think it was, I went to see the specialist. My husband came with me. Again he was behind a curtain and I wanted him to be very much involved because you can only take so much in, of what they’re telling you, and I had to, I felt that I had no choice but to go along with whatever he was saying. I just wasn’t given this choice. I realised that he was telling me that if he didn’t take everything away then he couldn’t be 100% certain that everything had gone and there could be more calcifications that he hadn’t found. It just seemed so extreme at the time. So extreme. I just went along with it. To be honest I was numb really. That was all I could think was well I’ve got to have this, you know, there’s no choice, I’ve no choice.

Linda describes the breast nurse as her rock ' it was her job to be nice but they also developed a real empathy.

So the breast care nurse came, I mean she was marvellous, she was a, she was my rock in the end, even though she was patting my hand and you know all lovely and so on, that’s her job. In the end she was actually somebody that I really turned to and I felt an empathy with her. I had to hug her, and you know, she was sort of knowing how I was feeling, because whilst your family and your friends are so sympathetic and they come and see you, and they’re all looking at you and giving you that sad look, and, “I’m going to be okay, I’m going to be fine.” , but they don’t know what it’s like. You know, you show them the scar, you show them the breast that’s gone, and, “Oh it’s not too bad is it?” Well it might not be too bad for you to look at, but for me to see everyday in the mirror, to be honest, I feel like a freak, and I’m sorry to say that, but I do.

Since leaving hospital, Linda has not contacted the breast care nurse. She prefers support from other women she has contacted on website forums.

I went to see the oncologist six weeks after the operation, and then there’s been nothing. Admittedly I can phone her any time I want, and she’s only on the end of the line, I can phone her, and I have done, if I’ve been a little bit worried about anything, but otherwise no, that’s it you’re left to get on with it. And I find the best thing is the websites, where we all support each other, because you can’t help worrying about any little thing that you get. I mean I do read about some awful, awful cases. And then, you know, the slightest pain I’m thinking, right have I got bone mets now, though I know it can’t be because it didn’t spread, it didn’t spread into any of my body, so I know it can’t be. But you can’t help thinking things like that, its human nature.

At the time of her mastectomy, Linda couldn't face any more surgery. She said she can't imagine living without a breast in the long-term and would like a reconstruction in a few years’ time.

Whilst your family and your friends are so sympathetic and they come and see you, and they’re all looking at you and giving you that sad look, and, “I’m going to be okay, I’m going to be fine.” But they don’t know what it’s like. You know, you show them the scar, you show them the breast that’s gone, and, “Oh it’s not too bad is it?” Well it might not be too bad for you to look at, but for me to see everyday in the mirror, to be honest, I feel like a freak, and I’m sorry to say that, but I do.

 

So, I mean whilst I was offered this reconstruction, I just didn’t want to know because this was my fourth operation, I’d had other operations previous, in two years. And I could not go through with any more, I’d had a sickener of hospitals. So I will have a reconstruction but I shall wait until I check that the remaining breast is fine, is okay.

 

And you’re thinking about reconstruction now?

 

Yes.

 

Or you’re made a decision?

 

I will have a reconstruction for definite. I can’t live like this, but I do want to check, knowing my luck, I don’t have very good luck, so I want to make sure that the remaining breast is okay, which hopefully five years down the line it will be. I don’t feel that I’ll be too old then to have a reconstruction, and I will definitely have a reconstruction. The only thing that sort of gave me a little bit of pause for thought was my GP said, with a reconstruction, you can’t really feel for any lumps. But, I mean there were no lumps anyway. And I mean I don’t know how it’s done, and I don’t know what tissue they use, and I believe they use part of the muscle either from your stomach or your back, so hopefully that will be safe enough but yeah, no I can’t imagine my life like this permanently.

 

I mean my daughter, bless her, she did say, ‘Mum let people just accept you for what’s happened to you and who you are, you’ve not changed’, which is fair enough. But until it happens to you, you don’t know how you’re going to feel and how you’re going to react. It’s not that I wear fancy clothes or anything, but it’s a case of you can’t just go out, you have to doubly check everything’s there. And I can’t just go swimming, I used to love swimming, I’ve got to get myself a special costume, and I’ve got to get myself special bras, which yeah okay it’s a little bit of inconvenience. But to my mind, you know, it’s something that I don’t want to have to think about, plus it’s a constant reminder every time I look in the mirror that I’ve had breast cancer, you know it’s something I want to get over and get on with my life now.

 

Yeah. And you want to have a reconstruction after about five years, or before that?

 

Yes, yeah, after five years I think yeah.

 

And has it has it been easier with time, when you look at yourself in the mirror, has that changed over the time, or do you still feel the same?

 

Not really. No. No. I feel, I don’t feel right. I really don’t feel right. The scar is healing quite nicely, as they should do I suppose, but no, I just, if both breasts had have gone, and I’m thankful to God that it hasn’t, I wouldn’t bother. I really wouldn’t bother, but to have one breast and the other is just flat is, it’s very strange, it’s very strange to get used to. A lot of women do, a lot of women don’t bother, and all well and good and that’s f

At first, Linda found wearing a prosthesis hard to accept. She is used to wearing one now but would like to have breast reconstruction. Patricia found her prosthesis heavy and uncomfortable and prefers wearing a swim prosthesis.

For the first three weeks really you can’t do anything, you can’t go out, because of this silly prosthesis that they give you. Actually it’s supposed to last six weeks, well I bought my own, I bought a swim, what they call a swim prosthesis which is quite a light weight, it’s a clear see through thing, but it didn’t matter because it was going in a bra. And I was able to get on with things then. I was able to go out and about and get out, I was able to, you know, it felt better. But then I got my proper prosthesis, and I can remember sitting down, put it on the corner of the bed and trying to fasten my bra with this, which is quite heavy, and it took me about five minutes, maybe more to do a simple two minute job. And I just sat and cried and I thought. “Is this my life now, from now on?”

 

And I couldn’t cope with that, until I got used to it because I suffer with bursitis in my shoulder so I have problems getting my arm up my back and I thought, “Well you know, this is it now, this is you from now on.” So this is why, you know, I thought to myself, and whilst I’m used to it now, it’s a case of a couple of minute job, now I’m fine, no problem. I’ve still, I definitely have got to have a reconstruction and be able to go out and buy, go to Marks and Spencer and buy a bra, off the shelf, instead of having to go online you know. So this is the, it has it's been a roller coaster of emotions yeah.