Interview 14

Age at interview: 49

Age at diagnosis: 30

Brief Outline: Found a malignant lump and was diagnosed with breast cancer in 1982. Underwent a mastectomy and was given radiotherapy. In 2000 diagnosed with Ductal Carcinoma in-situ (DCIS) and was given a another mastectomy.

Describes bottling up her feelings and fears about not living to see her children grow up.

I was just in a daze the whole time.

I was quite bottled up at the time. I didn't talk to people about my feelings. I coped. And everybody thought I was coping fine, which I was on the surface but underneath I was in agony.

And I was lying awake in the nights thinking I would not see my children grow up, because the daughter who'd I'd just been weaning was, she'd been born in 1981 so she was just over one year old when I found the lump. And my son was two-and-a-half coming up to three when I was having the treatment.

And when I say I bottled everything up, I bottled up my feelings. I didn't ask for help. I didn't talk to people about how upset I was. I didn't even tell my husband much, that I was lying awake in the night.

I was frightened that my children would lose their mother at an age when they wouldn't remember me. And having been on the receiving end of losing a parent I didn't want that for them.
 

Describes her fears of possible recurrences, which led to anxiety about attending follow-up appointments.

I was just terrified it was going to pop up somewhere else. So I had to really get to know my body again. I really had to build up confidence in my own body again.

And especially the first couple of years I was just a complete wreck. That every time I had a headache I was convinced I'd got a brain tumour. I had pains in my abdomen that I was convinced were liver cancer.

Especially back at the beginning. I found it very hard going through the cycle between check-ups. I would get very frightened right before a check-up that there had been something there since the last one and they'd missed it.

And I'd be very frightened right after a check-up that I'd got to wait another whole year and there might be something there that they'd missed.

But as time went by I got more confident, like riding a bicycle.
 

Explains that she did not want breast reconstruction because it involves using other areas of the body.

I was offered reconstructive surgery the second time, not the first.

Oh one thing about mastectomies is that it's, as with everything else, some people are more skilled than others. And I did actually have a very good mastectomy if you can call a mastectomy good. I had a good result, one that's worked very well with prostheses.

So when I was offered the reconstruction with the second one I didn't really feel much point unless I'd had the first one reconstructed.

So I asked him to do the mastectomy really flat - the same as the first one - not to try and retain any skin and tissue for a reconstruction.

And the first one, because of the radiotherapy, if I was to have had a reconstruction I would've had to have one using tissue from behind the shoulder, called the latissimus dorsi, I'd have to have that one, plus a small implant.

That's one of the reasons I didn't have that operation - because it involved areas of my body that hadn't been operated on. And like I said, I swim, I cycle, I'm very active. And I didn't want to involve an area - I mean that's my personal decision - I didn't want to involve an area of my body that's not already involved.
 

Describes balancing her diet so that it is both healthy and enjoyable.

So I read all these things and I reduced the amount of fat in my diet and salt and tried to drink less caffeine. And tried to reduce the stress in my life but of course that was virtually impossible. A lot of my stress was kind of in-built. I didn't address that for years.

But, yeah, I did try and adjust my lifestyle and went onto wholemeal everything.

And I still have some of those changes but I've backtracked on some of that because I prefer to enjoy myself.

I feel that, to some extent, you can put yourself under a lot of stress by going for these changes and that I'd rather have a healthy lifestyle, a reasonably healthy lifestyle, but still enjoy myself.

So I eat lots of fruit and vegetables. I try and have my 5 portions of fruit and veg a day and wholemeal bread and things like that.

But I eat meat. I use butter. I drink alcohol. And I aim to do those things in moderation rather than give them up.
 

Discusses why she declined having tamoxifen.

I've not had tamoxifen because when I was first treated tamoxifen was quite new.

And I've survived all this time without tamoxifen so when it was offered to me last year, and my initial tumour was not tested for whether it was oestrogen receptive or not, I declined to have tamoxifen because I've survived anyway.
 

Describes lymphoedema and recommends ways of avoiding making it worse.

The lymph in the arm, if it's not been drained properly, can cause the arm to swell up and that doesn't go back to zero. I mean you have a permanent problem then because once the vessels have swelled up they don't go back.

So it's very important to look after the arm really well, to do exercises as given by the hospital, not to have massage from anybody that doesn't know what they're doing, because if you massage too heavily and in the wrong places, in the wrong order, you can cause lymphoedema.

The condition is called lymphoedema.

And not to wear tight bracelets, tight arm bands of any sort, to be very careful about infection. Gardening, actually I don't wear gloves gardening a lot of the time, but I am quite careful. If I cut myself, I'm very careful to keep it clean.
 

Explains why she opted for a second mastectomy.

So I had actually asked three years before' "Couldn't I just have another mastectomy?" Because I was just not happy with that breast. I was, I had no confidence. I was frightened of it basically. Because you know I was afraid it was going to let me down.

So this time, with the pre-cancerous changes, I had the small area removed and that was just what they called atypical cells.

But in the middle of it was something they called, they called DCIS, or ductal carcinoma in situ, which a lot of people get diagnosed with on screening. And that is very early cancer changes. So this time they agreed that I could have a mastectomy.

So I had a second mastectomy just about a year ago. And I know that a lot of people would be horrified by that but for, that's my decision and I feel much safer.
 

Discusses her experience of prostheses as a Patient and Fitter.

Yes, I work for the Fitting Service now. And so I've trained as a fitter. Prostheses are absolutely wonderful now.

You can buy special bras, and special swimming costumes but you can actually, with a well fitting bra - every woman even without breast cancer should be wearing a well fitting bra - but with a well fitting, supportive, bra you can wear the prosthesis and nobody would know.

And I've realised as I'm talking to you that I'm actually wearing something quite shapeless and you can't tell whether I'm, whether I've got a well fitting bra and a good prosthesis or not.

But I promise you it's very good and you wouldn't know the difference.

I've now bilateral, bilateral mastectomy, but when I had a single mastectomy you wouldn't have known when I had the bra on.

And with maybe a tight fitting tee-shirt you wouldn't have known the difference between the mastectomy side and the natural side.