Jane - Interview 5

Age at interview: 59

Age at diagnosis: 58

Brief Outline: Jane was diagnosed with DCIS in 2007, aged 58. She had a mastectomy and a DIEP flap breast reconstruction at the same time.

Background: Jane is a married library manager. Ethnic background / nationality' White British

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Jane had attended for several routine mammograms but was recalled after one in 2007 at the age of 58. She wasn’t concerned at this stage, so didn’t tell anyone that she’d been recalled.

 

After further tests, Jane was diagnosed with DCIS, which she had never heard of before. One of her biggest concerns was telling her husband because she didn’t want to worry him.

 

Jane was told that she would need to have a mastectomy because the DCIS was in two different places, but would not need any further treatment. Because Jane wanted the DCIS removed, she said she was not too worried about losing her breast. She also felt that she was not overly concerned because she was in her fifties and happily married. She felt that, had she been younger, she would probably have been more anxious about it. Jane was also offered breast reconstruction and her doctor recommended a DIEP flap. This is when a breast form is created by taking skin and fat from the lower abdomen but without any muscle. After doing some research on the internet, she agreed to having it.

 

Jane’s surgery went very well and she was discharged from hospital one day earlier than planned. She felt the whole experience had been ‘a distraction rather than something to agonise about’ and went back to work seven weeks after surgery, working full-time again within days of returning to work. At the time of interview, Jane was planning to have a bit more surgery to match both breasts.

 

Jane was happy with the health care and information she received from health professionals and the support she received from her colleagues. She feels that DCIS is easy to deal with compared with invasive breast cancer and was glad that she attended for a routine mammogram. She now has yearly mammograms and encourages other women to attend for routine mammograms when invited.

 

Jane was interviewed for the Healthtalkonline website in 2008.

Jane felt that, had she been younger, having a mastectomy would have been harder. She said she could accept having a mastectomy because she was happily married and came from a medical family.

I’ve thought since, I know that some people I’ve talked to have been fairly surprised that I was so matter of fact about having a mastectomy. And I think that’s due to two things really. I think it’s due to the fact that I come from a slightly medical family so it didn't frighten me as a procedure. And also because I’m in my fifties and happily married and I’m not, you know, a twenty-nine year old looking for a boyfriend or anything like that. And if I’d been twenty-five and I probably would’ve been a lot more worried and a lot more concerned about how I was going to look afterwards and so on. So those would be big issues. They just weren’t particularly for me.

Jane accepted that a mastectomy would be the best treatment for her because her DCIS was so widespread. Her main concern was having it all removed.

I went back to the surgeon. And he said, “It is, this is DCIS.” And he spent ages with me. I was very impressed. I had a load of questions by then. And he went through them. And he drew me diagrams of where the DCIS was. And it was clear at that stage that we were probably talking about a mastectomy because the DCIS was, as he called it, at ten o’clock and two o’clock. And said, “Look we really can’t take this out because it’s going be, you know, your breast could fall off [laughs] because it has so many holes in it.” So I knew we were talking about a mastectomy.

 

But I also realised at that stage, because of what he had said, that it was highly likely that was all we were talking about, that we weren’t talking about chemotherapy or radiotherapy or tamoxifen or anything. It could be quite likely that I wouldn’t have to have any of that. And that was hugely helpful because that reassured me straightaway. Because I think, in common with a lot of other people, the thought of all those sort of therapies is the thing that is truly terrifying really. I know women often have huge issues with losing a breast. But I just didn’t. I never did. My immediate reaction was, if there’s a problem with it, just take it away, that’s fine, I’ll, I can live with it.

The nurses were helpful and supportive. Jane improved every day and was discharged a day earlier than she'd expected.

I had to be very supported of course on the left breast with the arm, I wasn’t allowed to move the arm or do anything. And that was quite, really quite difficult to remember. And the nurses were forever saying, “Jane, don’t move that, don’t do that. Don’t pick up anything with it, just keep it there still.” And that was really difficult to remember to do.

 

The other thing they kept telling me was not to cross my legs in the bed, which is another thing that’s really difficult to remember not to do. But they were absolutely terrific. Everybody says it but it’s a truism, but they were, they were really lovely. And nothing was too much trouble. And I wanted to go to the toilet fairly on and they, they were so good about, even though I was pretty frail, and they were so good about sort of tipping me into a commode type chair and pushing me along to the loo, even though I could barely comfortably sit up straight. I wanted to go the loo, I wanted to try to go to the loo, so they took me and I thought that was very impressive.

 

After that I think it was fairly textbook like after that. They took the drains out one day. They took more drains out the next day. They took a catheter out on schedule. People came and visited me. I sat in a chair for about three hours on about day three I think and I felt quite woozy. I was very glad to get back to bed after three hours in a chair. But I was glad I got, and I had some visitors then too.

 

I was not eating very much. I wasn’t very keen on food. I was, didn’t, I felt, I felt OK, the breast felt all right. The breast didn’t feel strange. It felt stranger much later on actually. At that point I was barely conscious of it. What else happened?

 

By, I suppose by, I had a little weepy spell about four days after the op. After lunch one day slightly weepy for no good reason whatsoever. Again that might have been the anaesthetic, I don’t know, wearing off. But I did feel, but once I’d sort of sat there and moped for about a couple of hours and thought, “Oh I feel weepy,” then it kind of slowly dissipated and I never felt like that again. So that was fine. And I just went up and up after that. I felt quite jolly.

 

I had a lady next to me, they put two of us together who’d had the op on the same day, so there’s a certain amount of competition about who could do what first. And I got my hair washed before she got her hair washed so that [laughs] that’s sparked us on. That was another really nice nurse thing that she came and took me away and washed my hair even though probably it was not the best thing to do. But I wanted it washed so she washed it and that was fine.

 

I got out a day earlier than they thought I would get out. I got out, they said I would be a week and in fact it was the sixth day when, the evening before they thought I needed more blood because some sort of count had dipped down but in fact I suspect I didn’t. But anyway I had these two pints of blood and after that I just, there was no stopping me. I felt absolutely full of beans and the next morning the physiotherapist came round and said, “Oh, well I’ve got to see if you can walk up the stairs.” And I did walk up the stairs, no problem. And so then they said, “Oh well, OK, ring your husband, you can go home.” And that was a really nice surprise because I wasn’t expecting to do it for another 24 hours.

Jane found having an ultrasound scan easy.

So when you went back, you had another mammogram. You had an ultrasound scan.

 

Yes.

 

And then you had a needle biopsy.

 

Yes.

 

For someone who might be looking at the Internet and wondering what does an ultrasound scan and a needle biopsy involve, how would you describe those two?

 

Well the ultrasound scan was very easy. I just lay back and they just ran this piece of machinery over my breasts and kept up a little running commentary, “Oh I think there’s something there. I think there might be something there.” I wasn’t looking at it or anything. And that was completely unworrying.

Jane says that DCIS is very early breast cancer and can be treated. There is a lot of helpful information on the internet.

If somebody’s newly diagnosed from my experience I’d say, “Don’t worry.” It really is, relatively speaking, easy to deal with and it didn’t involve any horrible pain. No pain at all. It didn’t involve any horrible treatments. Do try to think of yourself as quite lucky that it’s been caught at such a very, very early stage. And that thousands of other people have it. Find out as much as you can. There are lots, there’s load and loads and loads of information out there. There are lots of really good websites. And lots of really good information you can print out and you’ll get given lots. And just, then just get on with your life because it’s really, try and think of it as a kind of a minor bypass really on real life.

Jane reacted by looking for more information and found it reassuring. She advises other women not to spend too much time looking for information on the internet because it can be worrying.

To be honest that day I did feel there’s something wrong but I haven’t got life threatening cancer. And my initial reaction always when I’m not quite sure about something is to go and find out information. So I was finding out information in a very, quite a relaxed frame of mind and also quite a truly curious frame of mind. Not a kind of, “Oh I’m anxious I’m worried. My God, what have I got,” frame of mind. And everything I found out increasingly reassured me. So I probably, maybe a bit optimistic about it. If I’d been wrong, if it had been breast cancer, it probably would have hit me doubly hard because I’d had this kind of terribly, this is fine, relaxed attitude. We can do something about this.

 

It’s just been, to me it’s been a distraction really, something to be dealt with rather than something to agonise about. I’ve done, I’ve looked at lots of websites and got lots of brochures that were useful and all the rest of it. They were, I got lots of information that was very useful at the time, deciding which kind of reconstruction to have. And deciding whether I wanted nipples or not and so on. But I was very conscious that it’s probably not a good idea to spend too much time on the web because almost by definition I think the people who are posting blogs or posting to websites are people who are anxious about something. And if you’re not careful you can get anxious where you weren’t anxious before and, because this is the kind of centre of concentrated anxiety. So I try to just dip in and use it for information and then come out again. And that was tremendously useful.

Jane found having a biopsy quick and painless, and wasn't worried about the little bruising she had afterwards.

What they wanted to do was a biopsy, a needle biopsy, which I’ve never had before. But I’m quite relaxed about all these things. So I trotted round to another room and there’s a doctor and a person doing the biopsy. And they weren’t very expert at it. So we had a bit of a laugh really because they would have this exploding needle, as I call it. And they were just saying, “I hope, does this hurt, does this hurt? Sorry to mess you about”, and so on and so forth. But they did that.

 

The needle biopsy, I think is fine. I’ve got the impression that they were worried that I would be worried by it. But really, it’s so quick. You do have to kind of manoeuvre your breast in position and they do a lot of coordinate reading and so on. So it’s a bit long winded in that you’re sitting there with your breast under a plate and they’re trying to read coordinates so that they know where to take the biopsy exactly. And then they say, “Try not to jump because any minute now the needle will go down.” And of course you do jump [laughs] inevitably, but not badly. I suppose if you jumped a lot then they would have to do it again.

 

Did you have a local anaesthetic at all? Or it wasn’t …

 

They did put a local anaesthetic on. I’m not sure whether they actually needed to because it’s so rapid. I know it sounds terrifying having a needle kind of pressed into your breast but it’s just like, it’s fired from a gun and it’s out before it’s in almost. And it is really just, it makes you jump but I couldn’t say that it hurt. It bled a tiny little bit afterwards like you might bleed if you pricked your finger with a pin or something. But it didn’t hurt.

 

No bruising or anything?

 

Not seriously, no. They warned me that it might be quite bruised. I think the first one was fine. There was a bit of bruising when I had to have a second one because the first one hadn’t actually done the job and I had to have a second one. And I think probably they were trying to be extra sure on the second one. And there was a little bit of bruising. But again you could bruise yourself falling down in the street or knocking your hip on a wall or anything really. You can easily bruise yourself. So I wasn’t worried by that really.

Jane said the doctor explained what DCIS was so well and calmly, she thought it couldn't be very serious. She wondered if there was any need to tell her husband.

I went back to talk to the doctor. And she said, “Well we think that this is probably DCIS.” And I didn’t even catch the name of it the first time. And then she started to try and explain what it was. And I was just interested really. I still didn’t feel particularly threatened by it.

 

And in fact I think she did such a good job in terms of being nice and being calm, that I really didn’t think it was serious at all. And for a long time I was saying, “Well look can we just sort this out and I don’t think I need to tell to my husband anything about this, we’ll just sort this out.”” And at one point she said, “Well actually Jane I think you will need to tell your husband about this and I don’t think we can just sort it out without him knowing.” And that’s when I thought, “Oh this could be quite serious.”

Jane thought very carefully about how to break the news of her diagnosis to her husband.

My husband was obviously the one I was most worried about because he is quite an emotional person and that was the worst point in a way, was how to tell him. I told him what was going on before we had a definite diagnosis of DCIS. I told him what was going on when we knew I had to go back to see a specialist and I probably did have something wrong. And that was it. And I thought really hard about how to say this without sounding alarming. I really thought hard about what words to choose. Because however you start a conversation like that, it’s alarming for somebody. And I didn’t want to start it by saying, “I’ve got some bad news”, or “I’ve just been for a breast scan and they think there’s something wrong.” And in the end I decided on the phrase, “I’ve got some news which might be unwelcome.” Which is a bit stilted but I just didn’t want to say, “I’ve got some bad news,” because we didn’t know it was bad news at that stage. And that was the only time I really, really thought about telling somebody because I knew he would be upset and I wanted to minimise that. With everybody else I just tried to be very normal, just bring it into the conversation in a normal way without being over-dramatic and without being under-dramatic and trying to hide it. So I think that worked really.

Jane's doctor was very reassuring which made it easier for her to tell other people. She nearly always had to explain what DCIS is.

I think telling people I did fairly naturally. I tried to share it with people in a natural way, without being dramatic about it. Or without rushing back to work and saying, “Oh guess what, I’ve got this and they’re going to do this.” Because that’s a bit wearing for people. Obviously I have to prepare people. And I did feel it was quite interesting having to tell people about it because nobody knows what DCIS is. And so I nearly always had to explain what it was. And I felt, by the end, I felt on a slight mission really to encourage people to have mammograms because I had absolutely no symptoms whatsoever. I had no lumps. I had no soreness. I had no visible signs. So if I hadn’t had the mammogram I could have gone happily on for years and then suddenly had full-blown invasion breast cancer, I’m sure. So I just feel, my basic feeling is that I’m really, really grateful that I had the mammogram and that they found out about it. And that is was relatively speaking to my mind, such a minor thing. I know it’s not a minor thing but it was … I thought it was a minor thing. And I felt I was just very, very lucky to get away with it.

After talking to her plastic surgeon and looking on the internet, Jane opted for a DIEP flap reconstruction. She was worried about the general anaesthetic.

I went to see the plastic surgeon about what to do. And they went through all the options of reconstruction, the different flaps or not having any at all or whatever. They made a very determined pitch for DIEP Flap. They talked about it being the golden standard. And I picked up, I picked up that it clearly was. And I did a bit of research of my own on the net to find out about all these things. So I was quite willing to be persuaded that it was the thing to have.

 

But I was always faintly amused by this kind of feeling that I got, that this was what they’d really like doing. And so this is what they would like to do on me. But that can work to your advantage because if I think, if surgeons are really engaged in and excited by a procedure, they’re probably going to do it well. So they did it.

 

I was slightly concerned by how long I would be under the anaesthetic for the DIEP flap because, as you know, it’s almost like a whole day in the operating theatre. But they were quite careful to paint me a picture of the comparative risks. And how being under general anaesthetic for an extra two or three hours was really hardly any more risky, than being under for four hours and I was convinced by that. So that was fine.

Jane didn't get much rest because the nurses regularly checked her breast but she was in no pain at all. She felt slightly nauseous and had an injection to treat that.

After that they [nurses] don’t leave you alone of course, after a DIEP flap. And they look at it all time. It seems like every ten minutes, they looked at it. I think it’s probably something like every hour. So people would come in constantly and take your pyjama top down and have a look at it and make sure the temperature was fine. They were all making very reassuring noises and saying, “Oh that’s lovely and warm,” and so on, but it doesn’t make for much rest.

 

And I think the progress after that was fairly normal. I was on a flat bed for a day and then I was allowed two pillows for a day. And I can truly say I had absolutely no pain whatsoever. I was completely pain free. I would just classify it as discomfort of various kinds, because obviously I had drains in. And I think the closest I came to pain was the back ache actually because I was on my back for so long, sort of a whole day in theatre and a whole day on a flat bed, that I really had quite a lot of back ache by the time I was allowed to have pillows and do something different. But that’s all.

 

And I had a slight, slight nausea. Not immediately after the operation. That was fine. So I think the nausea, I suspect was probably something to do with the antibiotics in the drip. Because it only kicked in after, I don’t’ know, 6, 8 hours, something like that. But it wasn’t severe and they gave me they gave me a pill for it, which didn’t really work and then they gave me an injection for it and that worked fine.

When Jane first came home, she was tired, couldn't move her arm very much and had discomfort around the scar on her stomach. She felt she was back to normal about four or five weeks later though.

When I came home, although I was tired and I had, I couldn’t move my arm very much, I wasn’t allowed to and I wasn’t kind of my normal self, nevertheless I managed to stagger to Sainsbury’s the next day. I was unable to, I dropped a Kiwi fruit on the floor of Sainsbury’s and I was unable to bend down and pick it up. And that was my second slightly weepy moment, which was a bit funny. Presumably because I was not quite my normal self and had just come out of hospital. And so I was picking this Kiwi fruit up and dropped it on the floor and then couldn’t pick it up, and felt, “Oh dear, I can’t even pickup a Kiwi fruit, I’m so weak.” But I had gone to Sainsbury’s, that’s the main point [laughs]. So that’s, I felt that well.

 

And then I had to sit in a particular chair, which was very comfortable. Which was almost like a garden chair, it just turned out to be the chair where I could have cushions round, which supported my left arm comfortably. And in bed I had to have pillows all around my left arm I remember. So my husband was kind of, I could wave at him across this raft of pillows in bed because that’s how I slept there. So I didn’t sleep on my side for quite some weeks. I just slept on my back with this arm raised.

 

I had lots of exercises to do and I did those religiously. And they were hugely helpful and I think I would counsel anybody after this operation to be absolutely religious and scrupulous about doing them because they were just so good. And you can really measure your progress too because one week you can do this and the next week you can do something else. And that really makes a difference. You really feel you’re making progress when that happens. I did those, probably I did those longer than I needed to. I probably did them for about 4 or 5 months after the op, just to keep it limber.

 

I went up into town to have my hair done two weeks after I came out of hospital and I would have said that by then, although I was feeling worried, slightly worried about people knocking into me, and also very worried about the Tube because, you know, the Tube gates have a habit sometimes of just closing on you for no good reason and I was really worried that they would close on me because of my tummy.

 

One wonderful by-product of having a DIEP flap is that you get a fantastic tummy tuck. I haven’t had a flat tummy for about 20 years I think and I have now got the most wonderful flat stomach. But of course a scar across it as well. And that gave me quite a lot of discomfort and I couldn’t stand up straight for about a week or two weeks after the op because the tummy tuck had been pulled so straight. So that was quite significant. So the thought of it being actually knocked by somebody or crushed in the Underground gates was a bit worrying. But nevertheless I felt, I must admit, I felt very close to normal after about two to three weeks after the op. I didn’t go back to work I suppose until seven weeks I think after the op. But it could have been four or five easily I think if I’d really wanted to. I could have coped.

Jane advises women with larger breasts to consider whether they would prefer to be a size smaller. She plans to have a breast reduction but wishes she had thought about this before her reconstruction.

There was one thing I regretted and that’s that they asked me quite early on, the plastic surgeons, how do you feel about the actual size of your breasts, do you want, because my breasts were slightly large and I think they were concerned that they might not be able to match the size. I think there’s some women are proud of large breasts and don’t want them to be reduced. And I think in my efforts to be sensible and calm and concerned about things you should be concerned about and not concerned about things you shouldn’t be concerned about I neglected to say, “Well actually, since you’re messing about with my breasts, I’d quite like to be smaller.” And I think they would have done it at the time.

 

Just the one breast smaller or both?

 

Well, no, both because I knew that all the time that there would be a tidy-up operation later. And I did say at one stage, “I don’t really, I really don’t mind being a bit lop-sided for a while”, you know. But I don’t think they realised that I really meant that seriously. So I feel in a way I missed a chance to have a breast reduction on the National Health. It’s not a serious issue but I think it means if you’ve got preferences like that, you should be very, think about them and be very clear about them rather than be a bit diffident or think, “Oh well, it’s not very important at the moment to think about things like that.” Because it probably is.

Jane has been waiting a year for her mastopexy, which was delayed for clinical reasons. She was frustrated to learn, though, that the surgeon has to seek approval from the Primary Care Trust first.

When I talked to the plastic surgeon at the time of the operation, which is April, I said, “Oh I would really like to get all this sorted out as soon as possible and I would like to have whatever stage two entails quite quickly. Do you think you would be able to do that in December?” And he said, “Oh yes, probably we’ll be able to do that in December.”

 

But in actual fact he hasn’t been able to do it yet. So now we’re almost a year on. And I went to them in October. I went to see them before October and there were clinical reasons why they couldn’t progress to stage two. They said it was just simply, just a bit, the breast was still a bit too hard, the skin was just a bit too thin and they really wouldn’t want to do stage two yet. And that was fine. That’s fair enough.

 

But then in late October we had another consultation about what we would do in stage two, and we agreed that I would have the good breast slightly reduced and lifted. I don’t think it’s a reduction, it’s a, I think it’s called a mastopexy or something, where it’s just kind of tweaked to match. And that they would also do a little bit of liposuction on the reconstructed breast to give me this better shape under my arm.

 

And we had a long discussion about whether or not I wanted a new nipple and I think the doctors were slightly disappointed when I said I’m really not bothered either way and probably I won’t bother. And I’m still half expecting when I turn up in the hospital for stage two for them to say, “Well are you sure you don’t want a nipple?” And I’m might give way at that point and think, “Oh yes, for goodness sake, if you’d like to do one, do one.” [laughs]

 

But anyway, we went away from stage two and they said, “Right, we’ll now put you down, Jane, for whatever we’re going to do in stage two.” And I went away thinking that I would probably hear within about 6 weeks or something like that, when I was going to have an operation. And then I phoned them in, earlier this month actually, to find out, very gently, what was happening. I wasn’t trying to say, you know, “I want to get this done as quickly as possible, please do me now.” Because that’s pointless if people have more urgent things to be done. But I just wanted some sort of idea as to when it was going to happen. And I discovered what they hadn’t told me that on, after that October date, they can’t just go straight back to the hospital and say, “Right book Jane in for as soon as possible.” It has to go to the primary health care trust and the primary health care trust has to decide whether there’s money and whether you can go on the list. And in fact when I started to phone around, I found out that they hadn’t got the OK from the primary health care trust until January. And I would have quite liked to have known that that procedure existed.

 

And I’m now trying to get in touch with admissions at the hospital to find out when I’m likely to be called and they’re quite difficult to contact and quite difficult to run. And I know it’s because they’re overworked and they’ve got a huge caseload. But it’s just, it’s slightly irritating from my point of view and I can, you know, this is where you’re quite tempted I would think to go private if you could. I can’t because it’s what, it’s classed as a kind of tidy up operation so you can’t do it privately. But I can imagine somebody thinking, “Oh, for goodness sake, I’m not going to wait six months for the NHS to decide to do stage two, I’ll go ahead.” So that’s where I am no