Interview 07

Age at interview: 59

Age at diagnosis: 56

Brief Outline: Diagnosed with breast cancer 1998, Ductal Carcinoma in-situ. Underwent a lumpectomy and Radiotherapy. In 2000 found 2 malignant lumps and had a mastectomy, radiotherapy and Tamoxifen. In 2001 chemotherapy was given.

Explains the meaning of cording and how she was helped by a physiotherapist.

Yes, one thing that I found very useful because, although it's not sort of proper lymphoedema, and I forget all the technical terms, and lymphoedema is only just now being talked about and people, women are being - and men presumably - it's being pointed out there are lymphoedema services where you can get specialist help on swellings and if your arm swells.

And that must be quite frightening.

And one of the things that I found which I haven't mentioned is - and they don't tell you or they say' "Oh you know only some people get it," - it's called cording.

And it is, it's like strings which are just horrible to touch them to begin with, which you know this is part of the exercise, when you put your arm out this pulling feeling all the way down your arm.

And the person I found most help is my local physiotherapist.

And it's not just the fact that she manipulates my arms and stretches it in certain ways, but it's company.

It's two of us doing it together.
 

Describes the procedure after the operation.

After surgery, I mean that is, it's not so much the pain, but you know it's the coming round, the wooziness. And the first time you need to get up to go and have a pee.

And of course you have to get the - oh that's right, my back, you know, trying to change position.

And the next thing of course you're conscious of is having two drains coming out of your side, and one drain is removed before the other.

The next day they took the first drain out and that is along where the breast was.

And I thought' "Well I'll watch this."

And I was absolutely horrified because it went on as it came out and it went on and it went on, because it's right along the incision, with little holes in of course so it can drain.

And that taught me a lesson - not to watch - because it was a most peculiar sensation.

But that was a relief.

But when you've got these bottles, and they have little Christmas bags, I think it had a snowman on it you know little carrier bags with these two bottles inside which you can carry around with you when you need to go to the bathroom.

Describes seeking out more information before deciding to have a mastectomy.

The other issue was the surgeon, on giving the bad news, said' "Now you have two options' either a mastectomy or a wide local excision." And he said' "It's your choice."

And we went through the reasons for each.

I can't remember very clearly at the moment but I remember I had Christmas, the whole Christmas period, to think about this. And thank goodness for e-mail. I was able to e-mail my specialists where I'd had my previous operation and said, you know, I wanted their opinion.

And again the woman surgeon said some very sensible and sound, gave me some very sound advice, which was she couldn't say categorically which way I should go.

She said experience showed, research showed, that in fact in this particular kind of case mastectomy and wide local excision were of equal benefit.

But, once I had made the decision, not to go back on it, not to think about it. Just forget and move on. You know, make the decision. Which was very, very good advice because it's no good thinking' "My God, have I decided on the right thing?" And that was a lot of help.

Raises the issue of further research into the causes of breast cancer and the interests of different groups.

Causes and prevention - not nearly enough research is being done on those.

Causes, you know, don't tell me you know, smoking and genetics, I mean the genetic thing is only you know, eight to ten per cent susceptibility, it doesn't give you cancer. And I think it's monstrous that more research is not being done.

And one of the reasons is the research into the treatments are funded by pharmaceutical companies who can make a very large profit out of it. And they need to look at their ethics, they really need to look.

I just wonder how many people on the boards of directors have relatives or friends who've died from cancer. I mean that should tell them, you know for the next generation, we need to know. And so people can make choices about lifestyles as well.

And that is another thing that, it's not often you can get help in that; looking at nutrition; looking at exercise, you know; how we live in a vastly polluted environment now.

And there are organisations who are politically involved.
 

Explains that losing her breast was not a great worry for her but appreciates that it might be for younger women.

And so I opted for mastectomy because I had had calcification in that breast previously. And I thought well it's, you know, my breasts have served their purposes.

I've had two children, a long time ago. It's not a worry to me to lose it. And so I decided on that.

But again, it doesn't worry me one way or the other. And I certainly don't want to be reconstructed.

Although were I younger maybe I would. I certainly know, you know, I've known people who have been. People are different, and some women are very conscious of their shape and their profile. I suppose it's to do with self-image and well lifestyle as well, and of course with who you live with.
 

Comments on the advantages of letting people know the truth and on the consequent support she received from friends and neighbours.

And there's no point in not telling people.

I made sure, because I live in a small village, and before I went into hospital I made sure that key people knew why I was going into hospital, what was going to be done, so that silly rumours didn't start circulating.

And I said you know "Do tell anybody you want to, there's no point in keeping it quiet."

And, you know, as a consequence of that you get enormous support.

Cards, I mean my room is, you know, covered in cards and that is, it's very uplifting to know there are other people out there, both with experience of cancer and those without.
 

Explains why she was given tamoxifen.

And again, having seen the person about radiotherapy, I was so relieved because she said that I didn't need chemotherapy because when I was first diagnosed with the invasive cancer I was put on tamoxifen straight away.

She said "tamoxifen plus radiotherapy, that's all you need."

And one of the things of course the, it turned out to be an oestrogen receptive positive tumour, so tamoxifen would sort that out. Well that's the general practice for that.

So I thought' "Oh, that's great."