Agnes - Interview 8

Age at interview: 54

Age at diagnosis: 53

Brief Outline: Agnes had a wide local excision, after which some invasive cancer was also found. She will be having radiotherapy and taking tamoxifen.

Background: Agnes is a married homemaker with two children. Ethnic background / nationality' White European

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Agnes and her family moved home in 1995, when she was 41. She has a family history of breast cancer and, when she registered with a new GP, she told him she was concerned about this and was given yearly mammograms from age 41 to 50. From 50 onwards, she went onto the NHS Breast Screening Programme, where she would be invited routinely for a mammogram every three years.

 

In 2008, Agnes had her first mammogram on the NHS Breast Screening Programme and was recalled shortly afterwards. She wasn’t concerned at this stage because she’d had mammograms before where she had been recalled and told there were no problems. After several tests, however, she was diagnosed with high-grade DCIS, which she had never heard of before. Agnes was told that she could have a wide local excision followed by other treatment or a double mastectomy if she was extremely concerned by her family history. She felt extremely shocked and, after thinking and reading about breast cancer treatments, decided to have a wide local excision. She found being in hospital very difficult – before surgery, she felt there was a lot of waiting around and, after surgery, was in a noisy mixed ward where she found it hard to sleep.

 

At home, Agnes found she was allergic to the dressings that were used and these were changed to another type. She also had pain around the wound. This turned out to be a haematoma (a collection of blood within the body tissues or cavities), and was treated with antibiotics.  

 

At the time of interview, Agnes was waiting to find out when she would start radiotherapy, which would be discussed at her next appointment. She would also be told when she would start taking tamoxifen, which she would be taking for five years. Agnes said she would have liked more information after surgery about looking after the breast that had been operated on. She felt that losing a part of her breast was like a grieving process and that counselling should be available to all women who would like to talk about the emotional side of having surgery for breast cancer and DCIS. She also felt that information about DCIS should be made more widely available because so few people know about it.

 

Agnes was interviewed for the Healthtalkonline website in 2008.

At 41, Agnes asked her GP if she could have yearly mammograms because she was concerned about her family history.

I think the whole story started when we moved to [place name] in ’95. I was forty-one at the time and I didn’t have a mammogram ever before. I had breast cancer in the family on the side of my mother and on the side of my father. Both of their mothers had breast cancer. My auntie had breast cancer. And I had knowledge that mother had a breast operation. But I didn’t know at the time whether that was for cancer or not. As it happens, she died of cancer but not of breast cancer.

 

So I went to see my GP when we registered with the GP in [place name]. And I asked him if I could have a yearly mammogram because I was concerned. And he agreed to that. So I did have yearly mammograms between the age of forty-one and fifty.

 

When I turned fifty I was told that I’m out of the high-risk group. And they’re going put me back on three yearly routine mammograms. So I agreed to that. And then in January of 2008, I started these three yearly routine mammograms.

Waiting to have surgery made Agnes even more anxious and she had a headache. She would have liked more information beforehand about what would happen at the hospital.

I wasn’t happy about the fact that we spent practically sitting four hours doing nothing. I was told prior to the operation date that I’m going to be meeting somebody from the surgical team. I’m going to have a meeting with the anaesthe, no I can’t say that [laughs].

 

Anaesthetist?

 

Yes, thank you, anaesthetist. That happened in about three minutes flat, the two of them. The rest of the time it was sitting around and getting more and more worked up about the fact that this is all badly managed. And finally to find that my operation won’t be until twelve o’clock midday.

 

I felt that they just put me in a situation where I’ll get more and more wound up about the whole thing. Instead of giving me enough information of why this was happening this way, I felt that I’m just being put on a conveyor belt. Because they work there, they know everything, how it’s going to happen. For them it’s just another routine day. But for me it’s, to some extent a life changing date because I’m going to lose something. It’s not that I don’t want to lose that lump because I do, thank you very much. But I felt to some extent like I’m sitting in a old people’s home, when every chair looks different and equally uncomfortable. You’re just treated as a thing or a number rather than a person.

 

I also had, a wire guided procedure. I had to have another mammogram just before the operation, they insert a tiny, very fine wire into where the trouble is. So that the surgeon would know how far to go and how much to cut around it. That thing was fabulous. It was a team of three ladies and a male doctor. They were just so focussed about you in the middle and they’re doing things to you. They explained everything. They done utmost to make comfortable as much as possible. It’s like a different planet altogether. It’s really in the same hospital. So what they can do on the ground floor level, up on the first floor, is way, way different.

 

What else comes to mind? I had a headache at the time already going on. It was a kind of, just a tension headache.

 

While you were waiting?

 

While we were waiting in hospital in the morning. I asked for a pill and even that couldn’t be given, just two paracetamols, without somebody signing for it. So I thought next time I will take my own stuff before I go in, if there’s going to be a next time. By the time I actually had my wire inserted and was all taped up and ready to go, things started to move very quickly. And within about ten minutes from coming back from this wire thing insertion place, I was put on one of these trolley things. And pushed into a sort of pre-op place where, again, I started to feel like I’m just really like a lump of lard here. Different people came in from all sorts of directions. They didn’t really explain what’s going to happen. The person who inserted the needle had trouble finding the vein. So she poked about which wasn’t very nice, just when you’re already shaking with nerves.

After talking to the nurse and doing her own research, Agnes chose a wide local excision. She felt a mastectomy was too drastic for a non-invasive condition.

So I went to [the hospital] the day after. And was told that I’ve got two options, either a lumpectomy and after-treatment of different sorts, or a double mastectomy due to the family history, which I found a bit shocking. Well not just a bit, very shocking [laughs]. Luckily I was introduced to a very helpful and warm person, my Macmillan nurse called [nurse’s name]. And she gave us a lot of free information to take home. And she said I can have a few days to think about which option I go for. I was told at the time that I’d probably have to be on tamoxifen for five years afterwards, and radiotherapy for a few months after the operation, whichever option I’m choosing.

 

We had about a week to think about it at home. And then we went back to see [the Macmillian nurse] and I told her that I would opt for the lumpectomy. And she looked very happy about it as well [laughs]. A much less drastic procedure than double mastectomy would be. My date was decided, operation date was decided to be sort of early mid March.

 

I had all the leaflets in a sort of compact kit given by the Macmillan nurse. And reading through it, reading through the Internet, reading through the books at home, I decided that I will go for the smaller operation because the double mastectomy seemed so drastic considering that it wasn’t even a proper cancer so to speak. I just couldn’t face the enormity of the other going in with full blazing guns [laughs], at something that didn’t seem that life threatening at the time. Because I was told it was non-invasive.

Agnes would have liked to know beforehand that shaking and shivering were possible reactions to anaesthetic.

When I came round after the operation, the first memory I have is having the shakes really, really bad, trembling, kind of uncontrollable trembling. Nobody said this is a sort of an after effect of being put to sleep. I thought, why can’t they be bothered to say before you go to theatre, ‘By the way, when you come round you’re going to have shaking limbs and shaking everything. And you’re going feel very, very cold and this is perfectly normal. This is a side effect or an after effect of the stuff we put in you.’

 

So that was about one o’clock. All this shaking that I’m now having is just the nerves of talking about it. It lasted for about forty minutes at the time I think. I still had the headache. I was given more painkillers that didn’t work. So basically until five o’clock, I was having this headache and really weird sensation of coming round from the operation. Sometime in the afternoon my husband appeared and then he’s gone home to look after the children.

Agnes had very little pain after surgery but was unhappy on the ward. She found it noisy and felt it could have been better set up.

Out of the other three ladies who already had their operation that day, one of them was really knocked out. I think she had a mastectomy. She reacted very badly to the after effects of the operation. In the other corner there was a lady who had dementia and was talking to herself all the time and making sort of really unpleasant remarks to my husband and me. And every time I asked the nurses to keep the curtains shut, if there’s a new shift of nursing they’d just open it again.

 

It was a very unhappy experience really. I couldn’t go to sleep. The following morning by about six o’clock, everybody was awake. The lady with the dementia was making a lot of noise because she wasn’t given a call button for the nurse because otherwise she obviously would’ve spent all her life pushing the button, with her needs. And she made noises with different, whatever she could reach from her bed. Banging on the window and bedside table. And I think I decided there and then I want to get out of here as soon as possible.

 

How did your breast feel at that time, did you have any pain or …?

 

I didn’t have much pain, no, no. It wasn’t so much discomfort of the breast wound, as just being very tired and unhappy really. I feel very strongly about the fact that I could not have a sleeping pill for six to eight hours. I cannot believe that a doctor could sign for it who never met me in my life. And nobody else in the whole hospital was able to sign for a sleeping pill?

Agnes would have liked much more information when she was discharged from hospital. She recommended a book that she found very helpful.

And then being discharged at hospital and still not given any sort of information about what you should look for or what could happen or if this happens, that is quite normal and please don’t bother us with phone calls. I don’t know. I just found it, everything prior to the operation went so whoosh, you know, in a sort of unbelievably fast timescale and then suddenly you’re done, you’ve been through the operation and then you’re left kind of dangling without any sort of further information, and basically it’s, you’re on your own kid. You know. You’re now grown up enough to look after yourself. We’ve done what we had to, you know. Your off our list now. So, you just carry on with your life now.

 

I ordered a book which is called ‘The Breast Cancer Book’, which is written by a journalist who had breast cancer and whose second operation was the full mastectomy with reconstructions, and she teamed up with her Macmillan nurse and they came up with the idea that it would be good to write it all down, every day events that happened in her life. I started to read that but, because again her case is much more serious than mine, I read it only a chapter at a time not the whole book in one go because it’s heavy going. But it’s a very good book and I highly recommend it to everybody.

 

What’s the title of this book? It’s possible that we might be able to put it on the website.

 

It’s called The Breast Cancer Book.

 

By Val Sampson and Debbie Fenlan. Right.

 

And there was a website as well, where people wrote about their experiences which is now re-launched somewhere else.

 

OK, that’s one to recommend.

 

It was good stuff. With a lot of useful information at the back and all through it.

Agnes was grateful to talk to another woman with DCIS but preferred to get information from other women by using internet forums.

I also got in touch with Breast Cancer Care who put me in touch with somebody. They’ve got a branch called Peer support group, where people who had, been through it all in some way or another, any kind of breast cancer, are volunteering to talk to you, to share their experiences and talk it over.

 

So I had a phone call now twice with a lady called [name]. She sounds like my age, probably a bit older than me, with three children, who are at university. Two of them are at university now. And she had her first operation five years ago. She lives somewhere in [city]. And she’s lovely to talk to. But because she’s talking already about two operations, I’m not sure I want to get in touch with her anymore because I don't want to be in the same boat. And also because English is not my first language and she’s got such a hefty Scottish accent, sometimes I do find it hard to understand what she’s saying. And I don’t want to sound ungrateful but it’s not really helping me much. So at the moment, I’m getting advice from the Internet and the forums. But I try not to overdo it because it could be very depressing at times.

Agnes said her Macmillan nurse should be given a medal: ' she was an excellent source of support and information.

I think my Macmillan nurse should be given a medal. You know, some people can, they’re just sort of neutral and this lady is treating you as you are the most important person on earth. And she could have done the spiel about what, 200 times a month, I don’t know what is her caseload but probably hundreds of people and she just treats you like you are the only one. And it’s so good when you can’t really think straight anymore. And she just, not cheers you up but tries to keep you normal, try to keep give you the amount of information that she probably feels that you can digest at any given time.

 

And just the fact that she’s there and even if she’s not there, I can send her an email and I’ll get something back in two days time. Or if it’s not, it’s only a two person team. And I’ve met both of them now and they’ve lovely, they’re lovely people and they should be just paid five times as much as they are now.

 

So you found them very supportive?

 

I found them extremely helpful and very good. And very kind people. And they’ve probably learned by now that women who’ve been told that they have breast cancer they can go all over the place [laughs] and they did find a way to cope with all that. And not just cope with all that but being careful at the same time and supportive, it’s really good.

After surgery, Agnes felt a sense of loss because part of her breast had been removed.

It’s strange that for me the whole thing of losing some part of me physically felt like going through some sort grieving. I don’t feel physically that much less now, it’s really just a mental bit, that this was a part of me who breast-fed two children. Been through breast feeding twice and now it’s kind of been taken away, it’s a bit like a loss but I’m not saying I didn’t want to lose it because I wanted to bring the operation date forward if possible rather than delay it, to get it out of the system before it can go ballistic.

 

It’s just a bit like going through the same stages when you go through a normal, grieving period. Of denial, of not being able to believe that it’s happened to you. To pretend that when you’re asleep, you’re still the same person as you were before the operation. Then all you have to do is just turn on your side and reality kicks in. If somebody could come up with some solution, what to do between those hours of the night when you get up and everything is dark, dark, dark, so black in your head, that would be good.

Agnes would have liked more information when she was discharged. She is having her dressings changed every two days because of an allergy and taking antibiotics because of a blood clot.

Since the dressings got changed a number of times, we discovered that I’m allergic to some of the adhesives. So I started to blister underneath, so we’re starting different kinds of dressings. And the wound couldn’t heal properly because, after the operation, it wasn’t stitched together the right way. So out of the, around twelve cm cut, two cm was still a bit dodgy, so I’m still having the dressings changed every two days. The weekend before Easter, I discovered that a different kind of pain started to appear around the wound. So I went back to check with the nurse. And she asked the doctor and he said I’ve probably got a haematoma, which is basically a blood clot that will eventually be absorbed by the body. So at the moment I’m getting antibiotics for it.

 

I came home with the dressing that I had after the operation. And I wasn’t told of any more information about how soon you can have a shower. Or what kind of pain management you’re supposed to do. Or maybe you’re going to react badly to some of the dressings. So I found it out all at my own cost later on when the dressings started to stretch a bit and took the top the layer of my skin with it. So that was another discomfort that would’ve been solved differently but… I’m sort of self-educating on this front.

 

Yeah. So you came home and you didn’t have any information about …

 

I wasn’t given any information apart from take some painkillers. Pretty much that was it verbally.

Agnes would have liked more information about the core biopsy and specific information about DCIS. She advises women to get as much information as they can.

For anyone who’s just been diagnosed with DCIS, from your experience, is there any advice you would give to somebody?

 

Apart from finding out as much information for yourself as you can, because what you can get from the NHS isn’t going to be too specific, it would be useful if anybody who did have a biopsy for somebody to sit down with them and explain what the different abbreviations mean and what is the diagnosis really. Because for them every abbreviation means something but for an ordinary person, they don’t and just finding the meaning of these out could be very traumatic at times if there’s nobody to explain the numbers and the abbreviations, what they actually mean and what it means to you.

 

So when I came across this four-page information leaflet it was just a general information sheet really. You want to know more, I think. Everybody wants to know their own personal diagnosis. And be pushy basically. Don’t just think that well they know better, the medical profession know what they are on about, but I think it’s important for everybody, for your own sanity really, to find out what’s going on in your own body.