Rachel - Interview 29

Age at interview: 52

Age at diagnosis: 51

Brief Outline:

Rachel was diagnosed with DCIS after her first mammogram. She felt she was rushed into having a mastectomy, which she had one day after her diagnosis.

Background:

Rachel is a married household manager. Ethnic background / nationality' White British

More about me...

Rachel was diagnosed with widespread high grade DCIS in 2003, aged 51, after her first routine mammogram. She was shocked at the diagnosis and had never heard of DCIS before. Her doctors asked her whether she could have a mastectomy the following day or following week, and she felt pushed into having it the next day both by the health professionals and her husband, who was extremely shocked at the diagnosis and concerned about her.

 

Rachel said that, had she had more information about DCIS beforehand, she might have waited a bit longer and taken more time to prepare herself for having the mastectomy. Later, she also wondered if she had had an operation unnecessarily and felt ‘guilty because I’d only got DCIS.’

 

Rachel uses a prosthesis and did not want reconstructive surgery because it would involve having another operation, which she felt was unnecessary.

 

Rachel was interviewed for the Healthtalkonline website in 2004.

After having a mastectomy, Rachel wondered whether it had really been necessary. She would have liked more time before surgery to think about it.

Having read the information what what were your feelings?

 

I can still go back into it. I try not to think about that because you’ve got to tell yourself that they’re spending at least two grand on an operation, they wouldn’t spend it [laughs] if it wasn’t necessary so it’s just the way my, I’ve taken it on board.

 

Yeah. Yours was high-grade wasn’t it, so does that help you feel?

 

Yes it does help me feel that it was a bit more justified, I also, and I’m not quite sure how I’m going to do it, whether I’ll wait until I see the surgeon with the notes, but I want to know about those five samples and what they found on the biopsy. I didn’t know what to ask at the time, I mean we were just, I think we just because, when you’re suddenly faced with an operation, that sort of question doesn’t really enter your head.

 

Have you felt that the more information you’ve read the more you want to ask questions and the more questions you have?

 

I haven’t got, I think questions have been answered by the information I’ve gathered. I wished I’d have known some of it before hand that’s for sure.

 

If you’d known some of this before hand what might, is there things you would have done differently?

 

I might have waited, whether I could have persuaded my husband or not I don’t know but I might just have waited that bit longer. I’m not so sure that they know enough about it, and I, especially since the lady that was sixty two that had, she was scheduled for her op an hour after me, she had to go back down to the breast care unit, to have her little piece pinpointed by wire to localise it. Something tells me that there’s something wrong when they’re doing it, they will have done a, they will have checked that out. What if it was nothing, I just think that maybe they’re being a bit over, over-doing it a bit. ‘Cause you’re certainly becoming a statistic.

 

It’s more I’d like to know the, it’s the biopsy one I think really now, and just to get the results after surgery, just to make sure I’ve got that written down correctly. And maybe know whether or not, I think I know that they’ve done the right thing, I think I know that they’ve done the right thing. I think it’s just me that feels that the operation might have, I just thought it was unnecessary. It felt like they were using a sledgehammer to crack a nut. That’s how it felt really.

 

When you got home, I mean, all that time you were dealing with the physical side because there was no real time to think very much was there, when did you really start thinking about the emotional side?

 

When I got home...

 

Yeah.

 

When I got home...

 

Yeah.

 

Yeah.

 

What kind of things were important, were you know, mattered?

 

Well, ‘was this a sledgehammer to crack a nut?’ I wrote a few things down [flicking through papers] this is what I said to [DCIS Information Project founder], she very kindly sent me a copy back, ‘cause I didn’t think it would come to anything so I’d written it again. I thought you might like to take it with you. But yeah it was just really, just I think it just happened so quickly. I looked in my diary this morning, but I didn’t- wasn’t putting a lot in there it was, I- just this feeling that I couldn’t get round the fact that it was perhaps unnecessary.

Rachel had a christening to go to and this distracted her from worrying about her test results.

So you had an appointment to come back in two weeks?

One week.

One week.

Yeah.

Okay, you didn’t ask any questions because you didn’t feel you had enough information…

That’s right.

…about what was going on at that stage.

Mmmm. Mmmmm.

So you then went back home. How did you feel during that week, did you think about it a lot or?

I think I was probably in shock. That was the Tuesday. Our friend died of cancer last year, and his daughter who is just now thirty had decided to be christened and have the children christened and that was happening on the Sunday. We were being Godparents so I was looking for an outfit. So I used that and I used the christening to take my mind off it.

There was very little time between diagnosis and surgery. Rachel felt it was like a whirlwind. She would have liked more time to adjust to the shock of needing a mastectomy.

He said “Come for the results of the test, it’s positive and it’s spread throughout the milk ducts and there are no options in the surgery, the whole breast would have to be removed. And he could offer the operation tomorrow or next week.” He described the procedure [reading from papers] and also would remove 4-5 lymph nodes which would be tested to see if any cancer cells has spread to them. He said if there was, he said if there were any need, they’d look for any need for further treatment and [my husband] asked if it were already cancer or a potential – i.e. something leading up to cancer. And the surgeon said “no, it was cancer”.

 

So that was he said. I got [my husband] to go through that again with me and – sometime later, because I was having this trouble getting it, thinking that I’d just had an operation for nothing [laughs].

 

So he told you, did you get any time to speak to the breast care nurse?

 

Yes, yes and she gave us an information pack and this photocopy of what DCIS is.

 

Did you read the information pack?

 

Oh yes. But we decided, not until I got home. We made the decision about the operation first.

 

There and then?

 

We had to do that there and then. We had to tell them. And she went off to get a bed and then once we got home because I then [laughs] only had a limited amount of time in which to get ready, so I put some washing on [laughs] and then, and I did sit and read the stuff that day.

 

So they said you will make, you must make the decision there and then?

 

Yes.

 

And did you and your husband discuss that alone at any point.

 

Yes.

 

Yeah, In the hospital?

 

And I said “delay”. And my husband said “No, it’s cancer, you don’t delay” and I said “well what’s another week?” And I really, I really felt quite pushed.

 

Yeah, pushed both ways from your husband and the medical….

 

Yeah, yeah, I really felt that I would have liked a bit more time, really. And I’ve got that written down somewhere [laughs].

 

Yeah, your feelings at the time?

 

Mmm.Yeah.

 

You had to make a decision very quickly so.

 

Yes and you, it’s not like you could say, like if it was a tumour you’d be able to say, - I think you’d know more and certainly you’d have, because you’d have felt the lump yourself more than likely you’d have had more time to adjust and I think that is a big thing. I, it felt like a whirlwind. We called it ‘fast-tracking’. That was my word for it because that’s how I felt I was being pushed, yeah. They’d have had me out of hospital a bit quicker as I say, which they could have done, which I understand, I appreciate that they need the beds but on the other hand you need time to adjust as well.

Rachel didn't know until afterwards what type of biopsy she'd had and would have liked more information beforehand.

He mentioned biopsy, he said, and then, "I can do that now". He went through the procedure with the needle just so that I would hear the click at the end and how they did it and said "now don't worry and once it does that, we will give you a local anaesthetic, if you feel any pain whatsoever we can give you more". And then, I thought well, I don't like needles particularly, so I didn't know what to expect and so I thought, I'll let them get on with it [laughs]. So I'm a bit of a coward, so I wasn't watching at the beginning, and then and I thought 'I think I'll have a look at this.' It was quite fascinating [laughs] because I could see the needle going in but I did think that five samples did seem a lot. 

Yeah. So did he click five times? 

Oh yes it went in five times. Yeah, yeah. And I think I looked after about the third. And I was amazed at how long it was. And that you could see it actually moving round inside you, it was.

On the screen?

Yeah. Quite fascinating really [laughs]. And then it was, they just, I'd got to wait outside until the bleeding had stopped a little bit and then went to the desk to make an appointment for the following week.

When you would get the results? 

When I get the results. And they gave me a piece of paper and that's when I knew I'd had a core biopsy. Didn't even know, they say 'have you got any questions?' but you need some input to ask questions. And I hadn't anything to, no guidelines whatsoever so, nothing to go on. So, that was where we were from there. 

Rachel was in hospital for four nights and, within three weeks, could do most of the housework again. She will continue with her exercises for a year and still massages her mastectomy scar.

So I was only in from the Wednesday till the Sunday morning. So four nights. Everything seemed to go okay. I was ironing again within three weeks. And certainly within eight weeks I was gardening again. And I’ve been renovating this floor and stripped it all back. So I’m back to normal but I still do my exercises. I still finger-walk the wall because there are some days I still can’t hit my pencil mark so I think if, if I were talking to any body who was just going through it, I’d say, “keep going with them”.

 

I’m going to do it for twelve months. One physio said to me or the breast sister said after ten weeks “you can stop your exercises”. But I had to go back because I’d had this tendon which is, it had gone by the time I went back to hospital but it was definitely up and I’d not been able to get rid of it for weeks and weeks and when I got to hospital of course it had gone. But she said that some countries do their exercises for nine months. They don’t here. So I thought well I still massage, I still do scar massage twice a day.

 

On yourself?

 

Yes, yeah on my – I use cream and I do scar massage and I do my exercises.

 

Yeah, that’s good.

 

I try and not eat too much.