Sandra - Interview 1

Age at interview: 51

Age at diagnosis: 50

Brief Outline: Sandra was diagnosed with DCIS in 2007, aged 50. She had a mastectomy and immediate reconstruction using an implant. After surgery, Paget's disease was also found.

Background: Sandra is a married nurse with two children. Ethnic background / nationality' White British

More about me...

Sandra was diagnosed with DCIS in 2007 after having a routine 3-yearly mammogram. She had had a few mammograms privately before the age of fifty after hearing that a friend’s sister had had breast cancer. Sandra had also had benign cysts in the past. At the age of fifty, she was invited for a routine mammogram on the NHS Breast Screening Programme and was recalled shortly afterwards. She wasn’t worried at that stage because she thought the x-rays might have found more cysts.

 

After further tests, including a biopsy, Sandra was told that she had DCIS. The doctors recommended she have a mastectomy because she had high-grade DCIS in two areas. She was also offered immediate reconstruction. She agreed to have an implant but, with hindsight, wished she had got more information about reconstructive surgery before her own operation. Sandra was also prescribed tamoxifen for five years. After the mastectomy and reconstruction, Paget’s disease was also discovered, which is a rare form of cancer that affects the nipple.

 

Sandra was shocked at the news of her diagnosis and also had to tell her two young sons, aged ten and twelve. She had told many of her colleagues that she was going for a mammogram and that she’d been recalled. With hindsight, she wished she hadn’t told so many people. She often found peoples’ questions and concern difficult because she wanted to be treated normally and not as a ‘cancer victim’.

 

Sandra looked for more information on DCIS on the internet. She found cancer forums helpful but sometimes felt that she spent too much time on them. She went back to work ten weeks after surgery but found she was extremely tired when she got home because she had two young children to care for. Around this time, she got a breast implant infection and had to take time off work to recover. At the time of interview, Sandra was feeling physically and emotionally better than she had for a long time and was looking forward to a phased return to work.

 

Sandra was interviewed for the Healthtalkonline website in 2008.

After her biopsy, Sandra looked for more information on the internet.

Everything was sort of done all in the same afternoon. I had that mammogram, then I went in to see the doctor, and she said that there was two areas of calcification, chalk as she called it. Like chalk. And showed me the mammograms, and there was two areas that looked a bit like, as if somebody had put a cigarette out on them I thought, it just looked like that. And she said those are the ones that may be nothing, but we’re a little bit suspicious of. So what we want to do is we want to be able to get a biopsy of both of those areas, and we will, they did that on the day, with a little sort of gun type thing, and then they x-rayed to make sure that they had got the calcium deposits. And they were happy with what they had got and then said to come back in two weeks time. So I came straight home and googled it.

 

Googled?

 

As in, on the internet.

 

What did you put in?

 

Breast calcifications. And it said 80, I think it said something like 85% are nothing, but then it did say that they could be, well they described as pre-cancerous or ductal carcinoma. I didn’t, to be truthful I then put it out of my head. I was very good actually. I thought that I’d done very well. I thought what will be, will be. And I was very good at putting it out of my head.

Sandra was glad she could have an immediate reconstruction and felt lucky the DCIS had been picked up early.

I saw the breast surgeon and he was lovely, really really lovely, and he sat me down and he said, “You do not have cancer as you know it.” He said, “You have cancer but it’s within the ducts, it’s confined to the milk ducts, it has not yet become invasive.” He said, “Yes, the cancer cells themselves are high grade, but they are within the duct and it has not become cancer, and it might be five years before it comes cancer.” He said, “We’ve got plenty of time before we do the operation, I do recommend that you have a mastectomy because, the two areas are too far apart,” and, “But we can do reconstruction at the same time.” I just grasped at that. Because there is no way I wanted to be flat chested.

 

And so I was really pleased with that. And he said, “There is no rush, lets see the plastic surgeon first, we’ll see what he says. Then we need to set up a date when I’m available and he’s available, the bed’s available, etc.” So I think from when I saw the breast surgeon to actually having the mastectomy and reconstruction it was about 5 or 6 weeks.

 

I wasn’t too bad after the initial couple of weeks. I got better, I felt better after seeing him. He gave me much more confidence. And then, most of the time, I felt very lucky that I’d been picked up so early. Sometimes I felt down but most of the time I felt I’m so lucky that I’ve been picked up so early. And, most of the time, I wanted a mastectomy as well, to get rid of it. Let’s, don’t want, no, you know, there’s no risks of anything here, lets get rid of it all. In fact I think that I would have let them cut it off at the other hospital when they first said its cancer. Put me on the table now, take it off. But there were also days when I thought, “Don’t want to lose my breast.”

Sandra is happier with her new breast now and plans to have her healthy breast lifted and nipple reconstruction.

My implant, I’m not noticing it now. Also the swelling is at last really, really settling and it’s looking much more like my right breast. My right breast is obviously lower, but the plastic surgeon has said he will re-arrange the furniture ‘cos I said I didn’t want an implant or anything in my right breast, but he said, “No, no, no, you don’t need that.” He said, “We’ll re-arrange the furniture, we take out tissue from the bottom, put it in the top and just shift the nipple up,” and he said they do that at the same time as having a reconstruction of the nipple ‘cos I have no nipple on the left breast. So I’m up, okay. And whether I’ve got used to it, whether because all the swelling has gone down, it definitely looks better. I now, when I catch sight of myself in the mirror, I’m not having a double take now.

Sandra was in no pain at all after coming round. Because she was treated in the hospital in which she worked, she had lots of visitors and didn't always get much rest.

First bit I really remember coming round, I had two intravenous drips in, one for fluid, and one was a morphine, patient controlled infusion. That was great. It makes you feel a bit sick after a while. I was completely pain free. A little bit uncomfortable but it wasn’t as bad to be truthful as I thought it was going to be, and it is just more uncomfortable, and having the drain under your arm. But it wasn’t as bad as I thought it was going to be. And I think having the patient controlled morphine where you can press the button if you want a little bit more, and they gave me something twice a day, intravenously as well to stop the nausea that the morphine brings. That was fine.

 

My op was on the Friday, the morphine came down on the, the drip came down on the Sunday, but I hardly used it Sunday anyway, and after that I just had a couple of paracetamols really. I was in hospital for 8 days, loads of visitors as you can imagine, working in there, and not just at visiting time. That was a bit of a bad thing as well really ‘cos there was times that I could have just nodded off and instead one of the pharmacists pops in to say hello, and that sort of thing.

Sandra was confused about whether she needed radiotherapy. She wanted more information and found it helpful talking to her plastic surgeon.

Anyway, on the Thursday, apparently I was discussed at the multidisciplinary team meeting. And I got a phone call to say, no, you don’t need radiotherapy after all. And that was devastating. I felt like I should be jumping up and down for joy, but instead I felt that I wasn’t getting the treatment I should be having. And that’s when I started getting really emotional.

 

You can’t, you know, well I was emotional and angry; I marched up and down this room. This doesn’t feel right, why, how can you be given three reasons as to why you need radiotherapy, cancer cells were too close to the chest wall, the cancer cells were all high grade, and they also found Paget’s, two lots of cancer as they described it. And now, I haven’t been given any reasons as to why I don’t. Apart from you don’t have radiotherapy for DCIS unless you’ve just had a wide lump excision. If you have a wide lump excision you’d have radiotherapy, but not if you’ve had a mastectomy, the idea is that it’s all gone.

 

And I really didn’t feel very confident at all. I phoned the Breast Cancer Care helpline, spoke to somebody there. She suggested really that I try to find out a little bit more information, that I ask to see the consultant, which I did do, and I got an appointment for the following week.

 

Following on from that I went into see the plastic surgeon. The plastic surgeon had obviously been told by the breast care nurse that I was worried ‘cos I wasn’t having radiotherapy. He bounced in because he’s quite a character and said, “I’m pleased you’re not, don’t need radiotherapy, it would have played havoc with my implant.” Oh like this. And I said, “Well I’m glad somebody’s pleased.” And he said, “Why, what is it about, what is it that worries you?” And I said, “I just feel that I won’t know because the implant is there.” And he said, “No, no, no,” he said, “Your chest wall is now on the top, not underneath the implant” he said. “Because your chest wall, the muscle was lifted to put the implant underneath, it’s your chest wall that’s holding the implant.” So this bit here is chest wall, muscle, my chest muscle. So the breast is sat on top of this bit. So he said it’s now on the top. So he said if there was any hint of anything that was left behind, you would get a local reaction. And that’s when I felt more confident. I walked away and I said, “Now I’m happier.”

Sandra's son became more disorganised at school and tearful. She worried that he was finding distressing information on cancer websites.

I also had a few problems with my eldest son. He was having counselling at the school now because he is ever so disorganised. Now he's up to Grammar School and he's a very bright boy, but he has very little common senses [laughs]. But he, it tends to be Mum who says, 'Have you put your homework in? Have you done that? Have you put this in? Have you got the right PE kit?' This sort of thing. And when I was in hospital he didn't not do his homework, but he forgot it. He took it in the wrong day. He packed, he has a two week timetable, he packed things for Tuesday on week 2 when it was week 1, and things like that. So consequently, and they're quite strict, so he got homework marks, so many homework marks equals detention, and he only ever had one homework mark in all the time he'd been there. So what I did was contact the student support to say that look this, all this has been going on.

 

Both schools, both my younger son's primary school and the Grammar School were very, very good with the supporting the boys. And the other thing that he did was he would, they said he would just be in lesson working, and he would just break down crying. He said, ìI don't know why I was crying.

 

The other thing he did was, I would catch him on cancer websites, which again is not a good thing. So again I'm saying to him, 'I haven't got cancer like that. I didn't need radiotherapy did I? Luckily. 'Cos that was also another thing. 'I didn't need chemotherapy, it wasn't invasive, it's gone. You know these sort of things, but he's now getting a bit better. He is better now, but that took a while. And also when I got his grade cards just before Christmas, oh they were down, definitely down, almost every subject compared to, they've picked up again since going back after Christmas, but yeah, his grades went down.

Sandra feels that it is sometimes harder to be diagnosed with DCIS than invasive breast cancer, especially for women who need a mastectomy.

You feel a bit like a poor relation ‘cos it’s like I’ve only got DCIS. You still have all the emotional baggage that goes with it, especially if you’ve had the mastectomy. In fact sometimes if it was an invasive cancer, sometimes, the breast care nurse said to me that its sometimes simpler because you could have a wide lump excision, you just follow the protocol for chemotherapy or radiotherapy and, its like the lady who I said was a receptionist, she’s said, “I didn’t have as much to go through as what you’ve gone through.” Although I wouldn’t want chemotherapy I have to say. But she didn’t find that too bad. She said, “I haven’t gone through as much as you’ve gone through,” she said, “you’ve lost your breast, I really wouldn’t have wanted to have done all that. And she hasn’t.

Sandra asked her breast care nurse for some information about how to talk to her ten and twelve year old boys about her diagnosis. It was surprisingly accurate in predicting how they would react.

I asked for some information from the breast care nurse about talking to your children. And I read that cover to cover to cover. ‘Cos that was the thing that I was really not looking forward to. And my children reacted almost exactly how the book said that they would react. And it was funny because I would not have, I found it very useful. I really would, my oldest child was 12 then.

 

They were 10 and 12 and my oldest child, they actually said that he would be more concerned with the way that you’re going to look in front of their friends. And my son is not very old for his years, he’s quite immature really, and yet that’s exactly what he said. He said, “How will you look? But what, like, what about when you pick me up from school?” So I was able to say that I won’t look any different. I won’t look any different because I’m going to have plastic surgery, to have another breast done.

 

And my ten year old, he picked up on the plastic surgery, and straight away said, “Are you going to be a Jordan? Or Michael Jackson?” Which just goes to think what children think about plastic surgery. “You’re going to be like…,” and he went a bit silly really. I think he just went a bit silly and started being a bit giggly. I did use the term, “I have got cancer, I have got breast cancer, but it’s been found really really early and it’s confined to the milk ducts, it hasn’t spread anywhere else, but I am going to have to have my breast cut off, but I’m going to have plastic surgery to put it.”

Because that’s exactly what the information, I mean I would have, as a children’s nurse you should tell children the truth anyway, but it definitely said that you shouldn’t skirt around the issue, you must use the term cancer because they may hear somebody else say it. If you’ve said something different, “I have an infection” or something, and then heard the term cancer so… The other thing that was quite interesting was it did say that they would be likely to, they may discuss it with their friends, it may be helpful for their friends to know.

Sandra gave a booklet about talking to children to her next door neighbour. She overheard the two ten year olds casually discussing her surgery while they bounced on a trampoline.

Our next door neighbours have got five children and they all play together, so I actually gave the booklet to my next door neighbour to read as well. And then I told her exactly when I was telling the children, and what happened was they were all playing in the garden, and I asked the boys to come in because there was something I wanted to discuss with them, and she called her children in at the same time, so my next door neighbour literally told her children about me at the same time as I told mine.

 

After about five or ten minutes, they all went out to play again and they were all on the trampoline, and I heard my ten year old talking to the ten year old boy next door and they were jumping on the trampoline, and my son said, “My Mum’s got to have something cut off.” The neighbours son said, “That’s fine,” He said. “Sam’s had loads of things cut off and he’s been fine.” I have to say Sam is the dog. So he said, “Sam’s had loads of things cut off and he’s been fine.” He said, “How would you feel if you were told that you’d got cancer and you had to have a plastic willy or die in five years?” So [son’s name] said, “I’d rather have a plastic willy.” And my son said, “Yes, so would I.” And they just carried on bouncing. And it was a really, really strange thing to say, I have to say he got his five years because I said, “It could be five years before it turns into the cancer.” So that’s where he got the five years from. But I always thought that was a very funny way of, so I thought they actually did very well at the time.

Sandra regretted having joked with her colleagues about going for a mammogram. She found it very upsetting when people tried to comfort her.

Next day I went to work. And this is what I regretted really. We was having a laugh and a joke with so many people about going to have my boobies squeezed because I walked in and everybody knew. “How did you get on, how was it? How was it?” It was awful, I couldn’t say the word. “It’s cancer.”

 

Did they know you’d been recalled?

 

Yes. But I’d still didn’t think that it was, I just thought that it was cysts. I think, because I’d had to cancel the clinic and there was the secretary’s, and oh, it was, in hindsight I would never have told so many people.

 

I am also one of these people who thinks that you know, let’s have things out in the open, it’s nothing to be ashamed of and that sort of thing. But there was so many people then that knew that I’d got a diagnosis of breast cancer, that everywhere I walked people were putting hands on my shoulder, putting their arms around me. I thought, “Please go away. Please just let me be normal, stop keep treating me like a victim.” And a victim was really what I felt. I really didn’t want to be on the other side. And in hindsight I would never ever have told people like the way…

 

And the thing was as well, every time I tried to say to somebody it was cancer, I just kept crying, and I got to the point where I said, I’m not telling anybody else. And I said to my colleagues, “Go out there, tell them all, so I don’t keep getting asked,” I said, “because I can’t say the word cancer.”

 

And actually ironically, our receptionist, they told her and she, then they came back to me and said that the receptionist had said she had breast cancer seven years ago. And I didn’t know that. And she found it really difficult just to say the word cancer. And I can’t remember what terminology she used, but she still called it, I don’t know, “thingamajig,” or something. “Since I’ve had that thingamajig.” And it was, so it was quite nice actually because I actually then went to talk to her and, you know, she was really, it was so, it was nice actually having somebody else that knew.

After a difficult time because of an infection, Sandra is now getting used to her new breast. She also feels better physically and emotionally.

This is the best I have felt consistently for at least two weeks now. And also I’m not sleeping any more during the day. I have much more energy. I feel much more better up here in my head. My implant, I’m not noticing it now. Also the swelling is at last really, really settling and it’s looking much more like my right breast.

 

My right breast is obviously lower, but the plastic surgeon has said he will re-arrange the furniture ‘cos I said I didn’t want an implant or anything in my right breast, but he said, “No, no, no, you don’t need that.” He said, “We’ll re-arrange the furniture, we take out tissue from the bottom, put it in the top and just shift the nipple up,” and he said they do that at the same time as having a reconstruction of the nipple ‘cos I have no nipple on the left breast. So I’m up, okay. And whether I’ve got used to it, whether because all the swelling has gone down, it definitely looks better.

 

I now, when I catch sight of myself in the mirror, I’m not having a double take now. My husband still hasn’t looked at it. He doesn’t like the thought, doesn’t like the thought of it at all. But he reassures me over and over, “I love you.” That’s lovely. But I’m getting, I’m much much more used to it now. And now that I don’t feel ill with breast implant infections anymore, now I want to keep it.