Beverley - Interview 15

Age at interview: 52

Age at diagnosis: 50

Brief Outline: Beverley was diagnosed with DCIS in 2006, aged 50. She had a mastectomy and DIEP flap reconstruction, which she was very happy with.

Background: Beverley is married with two grown up children. Ethnic background / nationality' Mixed Race

More about me...

Beverley said that, because she was approaching the menopause and had always had very lumpy breasts, when she noticed changes in her breast she ignored them. In time, the changes looked more obvious and, at the age of fifty, she was invited for her first routine mammogram. She was recalled and further tests showed that she had high grade widespread DCIS.

 

Beverley found waiting for test results the most difficult time, as well as waiting to find out what treatment she would need' either a mastectomy or mastectomy and radiotherapy. She was told that she would need a mastectomy and chose to have an immediate DIEP flap reconstruction, which involves creating a breast form by taking skin and fat from the lower abdomen but without any muscle. She was worried about having such long surgery that would last about eight hours. Later she also had nipple reconstruction, which failed, and she is having another nipple reconstructed soon.

 

Beverley said she was very happy with the reconstruction and felt that it took six weeks for her to get back to normal physically. Emotionally, she felt quite depressed. On one of the breast cancer websites, she talked with a woman who lived locally and who had had a breast reconstruction. They met up and decided to set up a support group because they felt women were not given enough information about reconstructive surgery. She felt the support group was one of the positive things to have come out of the DCIS diagnosis, that she is ‘passionate’ about it, has met a lot of other women and made many new friends through it. She also feels that, since recovery, she now makes the most of life and opportunities.

 

Beverley had never heard of DCIS before her own diagnosis and looked for more information on the internet. She would have liked more information about it and different types of breast reconstruction. She would also have liked to talk face-to-face with other women who had had a DIEP flap reconstruction.

 

Beverley was interviewed for the Healthtalkonline website in 2008.

Beverley has set up a support group for women going through breast reconstruction.

One day she said to me, “We need a support group for this.” Because we realised that when it came to reconstruction it's an awful lot to try and take in. There’s a lot of different options, a lot of different operations and there's so many questions. And all you get is half an hour with the surgeon. And OK they've got a reconstruction nurse but you don't feel that you can keep ringing her up and saying, “But what about, and what about this.” And there are so many questions you've got that we decided that we would start up a support group, which has gone absolutely potty. We have at least, well we had fifty-four people at the last meeting. 

 

That’s for your local area?

 

Yes, just for [place name] around here. Yes, and it's really just gone mad and we have a speaker and we, afterwards if people are waiting to have operations, want to see what a reconstruction can look like we’ve got some ladies who will show them what the reconstruction will look like. We go off to a separate room and they can go and view and see what it's going to be like. We show them immediate and delayed reconstructions and they can an idea. And we'll talk about how we felt and because most people worry that they’re going to be in a lot of pain after the operation, which is, they don't let you be. So, you know, any sign of you feeling in pain and you've got morphine and you're OK. And a lot of people then get worried about, well particularly with my operation whether you can stand up straight or not very easily for a while afterwards. And OK you may look like an old lady for about a couple of weeks but after that you're OK. So, no, it's in some ways it's weird but it's been quite a positive thing. 

Beverley says that, although women often worry when they're diagnosed with DCIS, it has a good prognosis. Many women live more enriched lives after DCIS.

Well, the only thing is with DCIS it has an extremely good prognosis, doesn’t it? I mean you, really the only thing is you feel you're making an awful lot of fuss over nothing. And that's one of the things that, but you're not because you're having to go through all the, you know, if you're having a mastectomy, you’re having to go through all the problems, the body change. You’ve still got worries that it may come back, it may come in the other breast. You’ve got a higher risk of that. You've got a higher risk of other things and you've got every reason to feel worried about it.

 

But it has got a very good prognosis. So, you know, you're not like people with invasive, you've got a lot better chance of carrying on a normal life. And actually you can carry on and actually have a more enriched life really because it's, I’ve actually gained an awful lot, a terrific amount. It's not the end of the world. It's different [laughs]. It’s something that you can just get on now and really start to live your life because that's made me realise that's what you've got to do, is get out there and live your life. We all of us plod along on our everyday lives and don't realise it.

Beverley feared the worst because the doctor found a lump when she was recalled after a routine mammogram. She was relieved to hear that, unusually for a lump, it was non-invasive.

After I left the hospital my daughter tried to keep my spirits up. She's a very positive person and I went back to work because I thought the best thing to do was keep working, try not to think about it. And I worked up till the day before I went back to the hospital and I had to wait an hour after my appointment date, which seemed like an eternity.

 

And finally got in to see him and he said to me, “You’re a strange one.” I always remember that because I thought to myself, well my family could tell you that, I am. He said, “You’ve, it's come back as non-invasive cancer.”

 

Even though there was a lump?

 

Yes. Yes. He was certain it was going to be invasive. And the fact that it was non-invasive he was, thought was very strange. And I can remember I must be the only person who’s ever been told that and I breathed a sigh of relief, because I just thought, “Thank God for that.”

Beverley ignored changes in her breast for eight months because she'd had a cyst in the past, but felt something could be wrong.

I did have a cyst about eight years ago. And went to the hospital and actually felt that the doctor was quite dismissive of it. He said to me, “Oh it's just a cyst.” Stuck a needle in and that was it. And I'd always had very, very lumpy breasts. And always laughed and said, “If I've got anything wrong with it, I'll never know because the things are just so damn lumpy.” And then I noticed some changes about eight months dreadfully before I actually had anything done. And I noticed that it had changed. It didn't seem quite the same. But I thought, ‘Oh well I was going through, getting towards the change. I thought, ‘Oh that's probably what it is and the whole of me is just changing.’ And ignored it.

 

But then by the spring of the next year, even my husband said, “There’s something not quite right about that breast, it’s weird.” [laughs] But I still didn't do anything about it. And I got a call out from, to have a mammogram. So I thought, “Well I must go and get it done, see if I can just check that there is nothing wrong with it.” And told the lady who was doing the mammogram that I suspected that things were not quite all right. And she just felt them and said, “I think they're going to want to do an ultrasound on you.

Beverley felt depressed after surgery, when she had time to think about everything she'd been through. Going back to work helped.

I became very depressed for a few weeks and I did think to myself, “Beverly it's non-invasive. What are you making all this fuss for?” But like all other women who've had breast cancer, I’ve had major surgery. I’ve had to put up with a lot of changes to my body. But after about five, six weeks the doctor had said to me did I want tablets and I said, “No, it's something I've got sort in my own brain.” The breast care nurse did say, said did I want to have counselling? And I said, “No, I'll sort it for myself.”

 

And after ten weeks, no twelve weeks, I started to go back to work. I thought best to get back to normal. So I went back to work and I actually, was probably one of the best things was to get back and just to start to feel you’re back to normality.

 

Because at home were you were just thinking things over and over?

 

Yeah. That's the trouble. At home you don’t, you know, you're just, there's so much housework to do and that's never been one of my most favourite things anyway. So no it was nice to get busy and do things and start to be normal again.

 

Can I go back to one other thing because a few women have mentioned that, that once they were diagnosed and then they had surgery things happened quite quickly.

 

They do.

 

But afterwards that they felt, “Oh my God, I feel…”, you know, they felt…

 

Terrible…

 

… depressed.

 

Yes.

 

… because it was afterwards that you’re at home with all this time on your hands.

 

Yes, that's right. I think most women do. From what I've seen on most of the websites, most women, the minute they're, any of their treatment has finished, whether they've had to go through everything, chemotherapy and the works, it's the minute the treatment finishes you feel, I suppose you've kept yourself going, you’ve had to keep yourself going, you've been, you know, the brave person and whatever and done everything that was necessary to be done.

 

And then all of a sudden you're just left to it. And you're on your own. And you sit at home and you think, “Oh my god.” You know. And it’s the first time you've really probably had a good chance to think about it, I suppose. Up till then you're just going from one appointment to the next appointment, to getting an operation done, to getting something else done and you don't really think about it. And then, and for my own personal thing, I just felt it was something I had to work my way through.

Beverley was petrified the night before surgery and hardly slept. After surgery, she found the first three days uncomfortable and didn't get much rest, but said it was all worth it.

I finally got the op and I was absolutely petrified. I knew it was going to take a long time, it could take up to eight hours. And I could remember feeling totally neurotic about it all. We went away and had a short break just to get away for a while and I had to go in the day before.

 

And like all hospitals, the day before they had got so many people in, the place was so busy they hadn't got a bed for me. And I knew I was to have to have a private room because they have to keep you at a certain temperature. But they hadn't got anywhere for me so I had to sit around and it was one of the hottest days of the year and I had to sit in the waiting room. And it was absolutely baking. And I remember just getting up and pacing around. In the end they sent me off for tests and by the time I came back, about half past four, five o'clock from the test, they had got me a bed.

 

I spent the entire night awake, couldn't go to sleep. I think they got fed up with me, the nurses on the ward, because by the morning I was pacing up and down the ward. And going down, it was a relief in the end just to go down. When I woke up after the operation it really wasn't that bad. It was a wonderful high of morphine so [laughs] that part really wasn't too bad. And back on the ward, I was back in my own private room so that was good. But they had to keep me hot and as it was so hot, they didn't have to put any heaters in but they couldn't give me anything to cool me down either. So I had to have lots of cloths on my head just to try to keep my head cool. And my temperature unfortunately went way up because of it.

 

And it was a bit uncomfortable for the first three days because they have to keep checking you every, well it starts off every fifteen minutes for the first six hours. And then it's every half an hour for the next day and a half and then they go down to two hours and four hours and they gradually lengthen it out. Because they have to check that the reconstruction isn't failing and that the blood vessels are open and everything is OK. So you don't get any sleep for the first three days and so it makes you pretty tired. But it was worth it because the reconstruction is absolutely brilliant. They did an absolutely brilliant job. So I’d recommend anyone to get it done.

Beverley said she would recommend a DIEP flap reconstruction to other women. She is happy with her new breast and said an added benefit of the surgery was a tummy tuck.

I'd recommend it, I mean, for some women I know it seems an awful big operation to have but, to my mind, it was fully worth it. Just a few weeks out of my life and I’m a, you know, I feel much more, I don't have to worry about a prosthesis and everything else. It's all just there, it's just as normal really.

 

And any scars have kind of faded?

 

The scars are fading, yeah. There were, the worst scar really is the one across the tummy because it's the entire length of my tummy but that's coverable.

 

Yeah. Is it quite low?

 

It's just below my bellybutton. Just about there. But you can put a bikini on and cover it up and, you know, there's no problem with that. So, no, it’s fine. I've actually got a flat tummy so that was another advantage, you get a tummy tuck as well. So [laughs]….

Both Beverley and her husband were pleased with her breast reconstruction. She can wear low cut tops and will have another nipple reconstruction soon.

How long did it take for you to feel, “I'm really happy with this”? Because you mentioned it's brilliant.

 

Yes, yeah. No, I was happy with it right from the beginning really. It's just so much better than having nothing there at all. And because they have to check it so often I looked at it immediately. And I know my husband was really, really reluctant to look. He was really worried over what he was going to see. And he came to see me, hmm, a couple of hours of coming down back from the theatre and she came to check it. And I said to him, “Come and look.” And he said, “No, no. I won't now.” And I said, “You come and you look.” And he came and looked and even he went, “Wow, it's brilliant.” [laughs] Because I think he wondered what he was going to see. But no, he said, “No, it's brilliant”. They have done a brilliant job.

 

Yeah. And how does it compare with the other one?

 

It's, I haven't, well didn't have a nipple. They’ve reconstructed one and they’re actually going to try and do a better one in a few weeks time. And they tattoo it. So you can, so it can look very similar. But it doesn't, it won't feel the same. You don't have the feeling in there but I've become, I'm always wearing low tops now and I never used to before. But all of a sudden I've become very proud of these boobs that I've got. I think I didn’t, took them for granted before. But all of a sudden I'm very proud of them and I flash them around all over the place, but [laughs]…

 

And you mentioned there’s no nipple at the moment but they’re reconstructing …

 

I did, they did reconstruct the nipple for me but it’s flat, flattened out, using part of the tummy skin. But it's flattened out, which can happen. So they are going to redo it for me. And they are going to, it's slightly larger than the other one. I asked them if they could make the other one bigger [laughs]. I thought why not go bigger, why go smaller? But they said that if they did, it could look not quite so natural. So I'd rather go for natural. And so they are going to lipo some out and lipo some into a line I've got, and there are various things they are going to do to it. So it's not, you know, it's an ongoing thing but it's still brilliant.

Beverley felt she wasn’t given enough information. She wanted small amounts of information at different stages and wished she’d known about Breast Cancer Care when she was diagnosed.

When I was diagnosed with DCIS I was given no information on it. I had to search the web. I couldn't even, I had to recall, try to recall what he said it was and did actually remember for once and spent my time searching the Internet to try and find out information about it because there is nothing and you're given nothing and have no idea. I mean I was just told it was non-invasive cancer.

 

Were the words DCIS mentioned at all?

 

Yeah. He did mention DCIS. But they didn't mention exactly all about it. I didn't really know all about it and I could have done with some information on that. One of the things that I didn't do either and I've only just done, is ask for my histology report. And I've only just found out exactly the extent of it. I think they realised I wanted to be drip fed the information and I've gradually drip fed myself the information. I didn't want to know it all at once.

 

I actually didn't find out about the Breast Cancer Care website until, and there's also another one BC Pals that I go onto. But I didn't know about it. I don't know why I didn't hear about it. You are given a lot of information at the beginning and though I scanned all the information, I don't recall ever seeing anything about Breast Cancer Care website and the chat rooms. And I wished I did in a way because I think it would have been a great help. Definitely, without a doubt. And it's quite nice to be relatively anonymous on there and be asking, able to ask new questions. No, I would say that that's one of the things they need to put in the pack that you get from the hospital, be something I could probably bring up and mention when we do things.

Beverley feels that information about DCIS before going for breast screening could be frightening. People only want to know about cancer when they are diagnosed with it.

Do you think that there should be more information about DCIS before people go for breast screening because often it’s found through mammograms.

 

It is, yes. It's often found through mammograms. Yeah.

 

Or would that just frighten people?

 

I think that would frighten people. I don’t know. I think that once you've had a diagnosis of DCIS is the time to actually hear. I mean, I don't know that it would frighten because I suppose in some ways it’s a comfort in a way to know that it's not an invasive cancer. But I don't think that people would take that in somehow. I don't know that people would, I don't think you actually know an awful lot about cancer until the point that you're actually diagnosed. So I think once you're diagnosed you want to know things, but I think beforehand you don't really take it in.