Interview 19

Age at interview: 48

Brief Outline:

Took part in research and had mammograms every 3 years since age 38. Results were clear. At age 47 noticed changes to nipple. Mammogram and ultrasound were normal. Biopsy revealed Paget's Disease. Had mastectomy and DCIS was also discovered.

Background:

A physiotherapist assistant. Married, with 2 adult children.

She had her first mammogram before fifty in medical research on breast screening.

How did you get involved with this research programme? 

Through my Nan, through my Grandmother. She was a, or we were asked if we would be involved and we said yes. 

And what does that involve, does it mean having mammograms every three years?

It did but then because I was such a low risk [laughs], which seems funny now ... but they took me off the programme and they said "well you're not at any greater risk". 

Oh, were they looking at family history or? 

Yes, yes. 

So, at what age did you have your very first mammogram through this Oxford research group?

I was probably about maybe 40, 38, 40.
 

She discusses what happened when she had a sore and weeping nipple.

Well I'd gone with my daughter onto a sun-bed, which I have never done before, and it was just, I thought I would just go with her to see what it was like. And over the next few days my nipples seemed to be a bit sore, weeping. So, I went to my GP and she said to me "I think its eczema" and she gave me some cream. 

I went back after a week and it hadn't done any, well there was no change in my nipple, it was still sore. So, she said "I think we'd better refer you to the hospital" and that took three months actually. I went back to her and I said, "I still haven't got an appointment" and my nipple was changing quite a lot by that time, it seemed to be getting a lot worse. Then I got my appointment through at the hospital. I went to the hospital.
 

Feels wary because her Paget's disease and DCIS didn't show up on mammogram but advises women to...

But I mean I was always quite vigilant anyway, but then I would never have been able to pick this up because it was, I mean it didn't show up on a mammogram. It didn't show on an ultrasound. I mean and that kind of gave me a bit of a problem for quite a long time because I felt "well why am I going back for my check-ups because you can't tell anyway". So, getting my head round that was quite difficult.

But now I have a problem now with going back for my, like I went back for my year check in September, having an ultrasound, a mammogram, coming away being told that I am clear because how do I know, because I was clear the first time. So, I do have a bit of a problem with that.  

I mean I do think people should go for screening. But at the moment I need someone to say to me, I think they class Paget's, well the DCIS is like pre-cancer rather than a cancer, so eventually it will show up on a mammogram but not until it's more invasive. So, I think they need to, I think maybe the professionals need to find a way of actually detecting it, you know, before it becomes invasive. And I would just advise people to do their check-ups and to, you know, go for their mammograms and ultrasounds. 
 

Her HRT hadn't been monitored and she stopped taking it when she changed doctor.

And how long had you been taking the HRT? 

About five years. So, without, you know, really thinking about it I suppose. 

So, you went to the GP every six months to get HRT? 

Mmm

And what kind of questions did he or she ask you? 

He didn't ask me any questions at all. I had no check ups at all while I was on the HRT. I mean I just had repeat prescriptions and I would just go and pick them up. It wasn't until I changed to the female doctor, who is the best doctor at the practice anyway, I think, and she said to me "I don't think you should to take the HRT anymore" and by which time we both come to the conclusion that I would come of it, so...

A mastectomy was the right decision for her because she had DCIS as well as Paget’s disease.

I think in my own mind I'd decided in my own mind that it was [cancer] and that I had to decide now for myself whether I wanted my breast removed or what was going to happen. So, obviously when the Consultant asked me my husband was totally shocked because he didn't realise that I'd actually worked it all out in my mind and I'd decided that I would have my breast removed.                                                           

Because otherwise if I just had part of it removed, how would I know that it was all gone and then I'd have to have more surgery later on. And I just decided that I wanted it totally removed and I found out afterwards that the breast care nurse had actually sort of spoken to the Consultant and they'd argued amongst themselves to say whether a wedge should be taken or whether my whole breast should be taken. So, but I mean obviously the decision was mine anyway and it was the right decision.      

And then I think when I had the results back saying that I had also got DCIS but it was 4 cm within the breast. So, it was the right decision to remove the breast and I was quite lucky it hadn't gone into the lymph nodes at all.