Sandy - Interview 20

Age at interview: 58

Age at diagnosis: 58

Brief Outline: Sandy was diagnosed with DCIS and, after a wide local excision, told the DCIS had actually been invasive cancer. She had radiotherapy and was taking tamoxifen.

Background: Sandy is a divorced administrator. Ethnic background / nationality' White British

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Sandy had always attended for routine mammograms and, in 2007, was recalled at the age of 58. After tests, she was diagnosed with DCIS and had a wide local excision shortly afterwards. Sandy was shocked at the diagnosis because she hadn’t had a lump or any other symptoms.

 

After surgery, Sandy was told by her doctor that the DCIS had actually been invasive breast cancer. She then had surgery to remove some lymph nodes to check the cancer hadn’t spread and found she was in pain afterwards. She was given five weeks of radiotherapy and is taking tamoxifen for two years. After the tamoxifen, Sandy will be taking another hormone therapy for three years but was unsure what it was called. She is currently having yearly mammograms.

 

Sandy said she had been extremely positive throughout her diagnosis and treatment and ‘never shed a tear’. She was very happy with her overall care but felt improvements could be made in her particular area. Before surgery, she had localisation in one hospital. She then had to travel to another hospital for the actual operation. Sandy had a friend with her at the time but otherwise would have had to go on her own.

 

Sandy said she had a lot of support from her best friend, who she stayed with for a few days after surgery. She lives on her own and advised other women in a similar situation to ensure they have support immediately after surgery. Although she was in no pain and recovered quickly, she said it was helpful to be at her friend’s home when first discharged.

 

Since her diagnosis, Sandy said she has gone part-time at work and makes more time for the things she enjoys.

 

Sandy was interviewed for the Healthtalkonline website in 2008.

Sandy stayed with a friend after surgery, and that turned out to be just what she needed.

When I went into hospital for the first operation, I needed support. I live on my own. And I thought, “Oh, a general anaesthetic, what’s going to happen when I come out? How am I, you know, am I going to be move? Am I going to be tired?” And my friend insisted that I stayed with her for a couple or three days. Which was just what I needed, she did everything for me. I couldn’t have come home on my own.

Sandy had some lymph nodes removed. They were all clear but her arm was a bit sore and painful afterwards.

When I went to get the results I was told that it was DCIS. And that that was a precancerous lump. So I was pretty excited at the word precancerous because I thought nothing wrong. But the lump needed to come out. So went in January, which was I think about a week after I got the results. And had the lump removed. I think ten day later I got the result from that and, unfortunately, it had turned cancerous. But the lump was out and they had good clearance so there was nothing more to do in the breast. But they would take a sample of lymph nodes to see if it had spread. That happened two weeks later and it hadn’t spread. So I was clear.

 

They’d explained the procedure i.e. a blue dye would be injected into the breast, which drains into the lymph nodes so that they could find the first five and remove them and test them to see if there was any cancer in them. And they did explain that if the cancer had spread there then there would be a further operation to remove the rest of the lymph nodes. But if they were clear, then that was it.

 

So you went into hospital and, was it a general anaesthetic? Yes…

 

Again, yes.

 

Again, yeah. And you came round the next day. How did you feel then, the next day?

 

Very sore. Very, very sore. And the wound had been bleeding during the night so there was quite a lot of blood in the bed. And the wound itself was painful. And that did come as a shock to me because after the first operation, where I felt no pain at all, suddenly I was, not in agony but it was pretty sore.

 

Where was the wound?

 

It’s, well if I show you. It’s just here. And it’s bigger than I thought. It’s about 2, 2 ½ inches.

 

So when you came round, were you in a lot of pain? Could you move very much?

 

No, I couldn’t move my arm. It was padded but it was very difficult to move my arm. And the back of my arm is numb. But I had pain from, shall I show you on here? From here to here. It was like a knife had been run up my arm. And I…

 

When you came round?

 

Yeah, I couldn’t understand that. And I still get that pain.

 

And did you speak to anybody there about that or afterwards?

 

Yes, I did, yes. One of the consultant’s team came to see me, obviously to redress the wound because it had been bleeding and he did explain how it would affect the arm. And that I would have to keep doing those exercises to keep the arm mobile. And then I would have to go back again to see whether the cancer had spread to the lymph nodes.

 

Even after that operation?

 

Yeah. That was a sample. So they took five out to see if the cancer was in there.

 

And so then you went back for another appointment?

 

Yeah.

 

Yeah. And they told you that …

 

There was no cancer in the lymph nodes so they didn’t need to do a third operation.

Sandy wasn't worried about her results because she felt fit and well and expected nothing to be wrong.

I had to go back I think eight or nine days later, which I did. And then they said that they would have to operate to take the lump out.

 

And in that eight to nine days that you were waiting, did you look for any information or did you feel worried? How were those eight or nine days because a lot of people say they went back and started looking on the Internet and …

 

No I didn’t because at that time I still thought, “Oh there’s nothing wrong with me.” I feel so fit. I can’t feel anything. So there’s nothing. And I was convinced that I was going to go back and they’d say, “All right thank you, you know, nothing to be done.”

 

Had you told anyone at this point that you’d had the tests or?

 

Yes I did. I hadn’t told anybody up until I’d had the biopsies. And then I did tell people.

Sandy had to arrange her own transport from one hospital to another. She said waiting to have surgery was the longest four hours of her life.

It was actually quite horrendous because I was told that I would have to have a wire inserted into the breast, that in order to do that I had to go to [hospital name], which is a forty-five minute drive away. Have the wire inserted at half past eight in the morning. And then get back to [another hospital] to have the operation. And I asked, “Well who takes me, do I have an ambulance or?” “No you get there yourself.” So my friend drove me. I had the wire inserted and they drove me back to [the second hospital]. Got back to [the second hospital] about half past ten. And sat in a waiting room until half past two, with a wire inserted in my breast. And not feeling at all well. So that is a very negative side. It may only be in this area, this part of the country that happens. But to expect someone to travel to [hospital name], have a wire inserted. Another forty-five minute trip back to the hospital and then wait four hours in a waiting room with a wire in your breast, not good.

 

So I was pretty annoyed and very uncomfortable. Don’t get me wrong, the wire didn’t hurt. I couldn’t feel it. But very aware that it was there. And ooh could I pull it out? Or, you know, I just had a little sort of cardigan on, could I rip it out? And ooh that was horrible.

 

Yeah. So you just sat and waited in the waiting room, was your friend with you?

 

She was with me the whole time. And of course I hadn’t been allowed to drink or eat since the previous evening. So she didn’t feel that she could go and get herself a drink because I was gasping by then. The anaesthetist came and said he needed to talk to me. He took me to a side room, which was a storeroom. And he had a consultation with me. Then the surgeon came and took me back to that same room. And then I was back in the waiting room. And that was just the longest four hours of my life. I just wanted it over and done with.

Sandy describes what happened when she had planning for radiotherapy and then the treatment itself. She was advised to use cream on the area for a few weeks.

Well it starts off with your treatment planning. And you’re put on a machine which is a simulator. It’s the same sort of machine that you’ll go on when you have your radiotherapy but it doesn’t actually do anything. And you lie there and they take measurements of you and they give you little tattoos as to where they’ve got to direct the radiotherapy. They’re pinprick tattoos, very difficult to see.

 

Then when you go for your radiotherapy, it takes a minute. The longest part is taking your clothes off, getting on the machine – you only take your top half off. You get on the machine and that’s when they line up all the tattoos to make sure you’re lying in the same place every time. You have to make sure you’ve got movement in your arm because you have to put your arms up above your head. And then, once they’ve lined you up, they disappear from the room and zap, zap, zap, the machine zaps. And then they came back in and move the machine around because I had to have it in two different areas. And you’re zapped again. And that’s it. A minute. And then you go and get dressed. And there’s nice music playing [laughs].

 

And you went for five weeks?

 

Yeah.

 

Every other day?

 

Yes.

 

Did you use any, some women mention they used some cream.

 

Yeah. Yes, they give you the cream when you first go and tell you to put it on the area twice a day. Now, I didn’t do that in the first week because I wasn’t having a problem. And I thought I would get a rash or get sore or get itchy. And I didn’t, so I didn’t use the cream. When I went for I think my fourth visit, she asked me if I was using the cream. And I said, “No, because I haven’t got any soreness.” And she said, “You must use it, every day for two weeks, whether you’re sore or not.” So I got my knuckles rapped over that. So I did religiously slap the cream on twice a day. And it was only at the end of the treatment that I did develop a skin problem. It was like I’d been sunburnt and it was quite painful. And quite awkward because it was under my breast where my bra goes. And most of the time I went without a bra. But I was going to work on the days I wasn’t having radiotherapy so I used to put a vest on and then put a bra over the top of the vest. And that was much better than having the bra rubbing on it.

Sandy will now be having annual mammograms. She is worried that the first one might be painful because she's had surgery, but will definitely be going.

You mentioned you’ll now have mammograms every year.

 

Every year, yes.

 

And how do you feel about going for the next one which will be the first one after …

 

Yeah, I’m a little bit apprehensive about it. Not because of what they might find because by golly if they’re going to find something I hope they do find it, but just because the breast that’s been operated on is, it’s still a little bit lumpy and I’m just hoping it’s not going to be too painful. But it won’t stop me going. Oh no, I’ll be there and I’ll be there early for my appointment.  

Sandy said she 'never shed a tear' when she was diagnosed. She wanted to get on with the treatment. In some ways, it was harder for her best friend.

Funnily enough I never ever got worried or frightened. And all my friends have said to me, “Oh, you’ve been so brave.” And I said, “No, it’s not a question of being brave.” When it’s happening to you, you just get on and do it. If it’s happening to your friend, your mother, your sister, then you fall apart. You know, because you’re worried and you’re helpless. But when it’s happening to you, you just do what they tell you.

 

I was shocked because I couldn’t feel anything. And I thought if you had breast cancer you could feel a lump. But I couldn’t. So I still didn’t really believe that it was cancer.

 

And at this appointment did you take someone with you?

 

I did. My best friend.

 

How did your best friend react at the time?

 

She went white. She was more shocked and disturbed than I was. Because, as I say, when it’s happening to you, you just get on and do it. But when it’s happening to someone you care about, it’s worse because you feel helpless. And you’re worried. And you think they’re going to be ill. They’re going to be in pain. They’re going to die. But when it’s happening to you, you just … well I just didn’t think like that.

 

Yeah. So you didn’t react?

 

No. No. And I still haven’t … never shed a tear.

 

Never?

 

Never [laughs]. No. Perhaps I don’t find value my life very much. I don’t know.

 

Everyone’s different. I mean, you sound as if you just had the attitude of getting on with what you had to get on with.

 

I just thought very positively. And then they were doing what they could for me. They were doing it very quickly. And I literally just put myself in their hands. And if they told me I had to be at this hospital, that hospital at that time, I was just there. And just let them do what they had to do next, you know. Get it out. Get it cured. And let me get on with life.

Sandy stayed with a friend for a few days because she felt tired. Back at home, she took it easy...

They sent me home with painkillers. And told me to take them every four hours whether I felt pain or not, which is what I did. I did that for that day, the day I was discharged. But then the next day I thought well when I woke up in the morning, ‘Oh I haven’t had painkillers for ten hours and it doesn’t hurt.’ So I stopped taking them. And it was fine.

 

And you stayed at your friend’s house for three days?

 

Three days yeah.

 

And did you do very much in those three days or did you just feel you needed to rest?

 

I rested. I mean I washed myself and dressed myself. And pottered around a bit. Buttered bread and stuff like that. But most of the time I rested. But I think that was purely the anaesthetic because I just kept falling asleep.

 

Yeah. And your friend, had she taken time off work or was she…

 

She’s retired.

 

She retired. So she was going to be at home anyway.

 

Yes, yes luckily.

 

And then you came back to your own home?

 

I came back to my home yes.

 

And how did that feel after first being in hospital and then being at your friend’s, did it feel …?

 

It was nice to be home, as it always is. But I did feel alone, except I knew [friend’s name], my friend was on the end of a phone. And would be here, you know, if I needed anything. But I felt fragile. I felt that I had to be careful not to knock myself, you know. Just to be careful and aware because I usually do things at a hundred miles an hours. But I thought no just slow down a bit and take it easy.