David - Interview 124

Age at interview: 57

Age at diagnosis: 52

Brief Outline: Diagnosed with breast cancer in 2003. He had a full mastectomy, chemotherapy, and radiotherapy. He stopped taking tamoxifen after two years because of the side effects that he experienced.

Background: David is an office administrator. He is married and has 2 children. Ethnic Background: White.

More about me...

David W first noticed he had a lump under the pectoral muscle whilst in the shower and again when he was on holiday in the summer. He kept an eye on it and in October went to see a locum GP who referred him for further checks a few weeks later. At this stage he had no thought that it could be cancer because neither he nor anyone in his family was aware that men could get breast cancer and he had previously had other lumps elsewhere which had just been fatty tissue. 

 

He had a full mastectomy, and half of his pectoral muscles and 16 lymph nodes removed. He had good movement in his arm even very soon after the operation and little pain. He had chemotherapy, then radiotherapy, then more chemotherapy.

 

He had tamoxifen but felt horrible whilst taking it. He put on weight and had hot flushes. He was worried about what tamoxifen was doing to him as a man. He was advised to take it for 2 years then stopped.

 

He really appreciated the support from his family, and thinks that partners and families often don’t get mentioned enough. He was also put in touch with another man with breast cancer through Breast Cancer Care’s peer support. He found it a real relief to talk to another man who could answer his questions. He found other men like him were also struggling to try and find information. He felt alienated by the booklets that he was given when he was first diagnosed because they only really focussed on women. He contributed to a booklet for men with breast cancer but is frustrated that there is nothing new since then and that almost all of the information about breast cancer is geared towards women. He thinks there is a real need for greater awareness about breast cancer in men.

 

He talks about the lack of choice of treatment for men with breast cancer, whereas women are given lots of choices and the opportunities to take part in clinical trials.

 

Taking tamoxifen for breast cancer caused David W swollen ankles and a fluctuating waist size due to fluid retention, plus hot flushes and night sweats; he stopped hormone therapy after 2 years.

So, as I say, I carried on, it would be a case of once you get through your chemotherapy and your whatever else, you’ll be on tamoxifen, was the chosen drug. I know there’s all new ones on the market, but I was given tamoxifen, which didn’t do me very well. It blew me up, it just… I got all the, you know, the menopausal symptoms. Men aren’t supposed to have menopause but I had the night sweats where something… we were going through the night sweats together, so the bed was wet through. And we had the night sweats and the hot flushes and whatever else, and I was just getting bigger and carrying a lot of weight and fluid. My ankles were swelling up and I just said to my nurses and doctor, I said, “Do I have to have this?” And they went, “Well, you do, really, you’re supposed to be on it five years”, and I said, “This is doing me no good at all. Ain’t there anything I can change?” This… herceptin and all that lot were just coming on the market at that time and it were, “Well, no, this is the best thing for you, we’ve looked at it”. I said, “Well, what is it doing to me, you know? What is tamoxifen doing?” I said, “Cos I feel horrible”. And… well, it’s just the same as it is for… but for a woman it causes, you know, problems below, womb cancers and cervical cancer and whatever else. I said, “But what is it doing to a man? I ain’t got them bits.” And they went, “Well, you know…”, you do feel it affects other things as well as, you know, but we had a long discussion with the nurses and the doctors and it was a case of, “If you can get to two years with the tamoxifen, we’ll review it.”

 

Ok.

 

So we carried on then, tamoxifen every day. Used to take it on an evening so you could more or less sleep off any symptoms, but oh, it just blew this thing, I mean, this is still blowing up and, you know, I used to be a 32 waist for years, but then I could get up in the morning and I’d be like a 36 waist, but by the end of the day I could be 38, 40.

 

Mm hmm.

 

It had just filled up with air and I’m just carrying all this lot around. It was horrible, and clothes-wise it was, you know, different pairs of trousers for different types of day. Really, really strange. Put it down to tamoxifen. It might not have been, but it didn’t happen before. Anyway, we got to two years with the tamoxifen and I just said, “Look, I am really struggling with this thing now, can we review it?” And they just went, “Yeah, we’ll have a look at it.” The next time I went to the clinic, it was stopped.

 

Right.

 

“Well, what do I need to take?” “Well… nothing. You don’t need to take anything. We have… looked into it and between me and you” - I don’t know if you want this on, but they just said that - “Between me and you, there’s no difference from taking tamoxifen for two years as there is for taking it for five years”. So are people taking tamoxifen for nothing, really, you know? I know a lot of people I’ve met through my journey is that they think it’s keeping them alive, but is it? I don’t know. I ain’t been on any drugs for two years, three years now, so… I’ve done alright.  

David feels his chest is lopsided after having a mastectomy for breast cancer. He was self-conscious about it at first but is less bothered now. He regrets that he wasn't offered reconstruction.

Nobody said to me, “Oh, would you like, you know, an implant to make it level?” I mean, I’m quite lopsided, but nothing. As I say, with losing not only breast tissue but muscle as well, it’s skin and bone on one side, literally. You know, simple as.

 

Would you have liked that opportunity?

 

I would have. I mean, if I’d have known about it, but it was never mentioned. It’s been mentioned since because you start asking the questions and say you find out about cancer after everything’s gone on, and yeah, it would have been nice to have been given the opportunity yes or no, you know?

 

So since you’ve started asking the questions, have you then been offered it?

 

No. Oh, yeah, not often but, “Well, you can have one if you want”, you know, sort of matter-of-fact sort of, you know?

 

And would you like one?

 

I’m not bothered now. Maybe at the time or maybe if I were younger, I don’t take my shirt off or owt like that, you know, cos you realise what that big sun can do to you.

 

Right.

 

So I’m just very aware now. You know, so no, I’m not that bothered, no.

 

Do you go swimming and…

 

I have done swimming, yeah, but I think you’re self-conscious at first cos you think everybody’s looking at you, but… I wouldn’t be bothered, no, you know? I’d go swimming if I needed to go swimming.