Kath - Interview 12

Age at interview: 48

Age at diagnosis: 47

Brief Outline:

Kath was diagnosed with DCIS in 2007, aged 47, after seeing her GP because her breast felt dense. She had a mastectomy and LD flap reconstruction.

Background:

Kath is divorced and living with her partner. She is a sales manager with three children. Ethnic background / nationality' White British

More about me...

Kath had been depressed when she thought an area of her breast felt dense. Because she had depression, she wondered if she was worrying unnecessarily. Her partner, a friend and her GP were unable to feel anything but her GP referred her to a breast clinic, where she had a mammogram and other tests. She was diagnosed with high grade widespread DCIS and told that she would need a mastectomy. She had never heard of DCIS before and looked for more information on the internet.

 

Kath had all her treatment done privately, including a sentinel node biopsy, a mastectomy and LD flap reconstruction, which involves moving a flap of muscle and overlying skin from the back of the body. Before surgery, she was worried about having general anaesthetic.

 

Kath felt that she had been rushed into making a decision about breast reconstruction and that she hadn’t been given enough information about it. She has had complications following her reconstruction and said these had had a big impact on her daily life. Kath said she was having a lot of pain in her hip, was unable to go swimming, walk very fast or do all her housework. She wondered if she would have chosen to have reconstructive surgery if she had known about these beforehand. She was going to have another appointment with her doctor and was expecting to have more surgery to treat the problems she had been having with the reconstruction, including reconnecting the LD flap to the chest wall muscle because it had detached.

 

Kath said she had had a lot of support from her partner, who she is now even closer to, but was disappointed with the lack of support from close family. She had been having counselling for her depression and found this helpful for the DCIS diagnosis too. She also found reiki and reflexology helpful. Kath said that, as well as depression and DCIS, she had had to deal with personal issues too.

 

Kath said she found a lot of information and support on breast cancer websites. At the time of interview, she was concerned about and dealing with a travel insurance claim because she had had to cancel a holiday when she was diagnosed with DCIS. Kath also gave up work when she was diagnosed and said she was now getting more involved in raising awareness about DCIS and breast cancer.

 

Kath was interviewed for the Healthtalkonline website in 2008.

Kath had problems with her reconstruction very soon after surgery. She has had a lot of pain and will need more minor surgery.

From day one I was told to get my arm above your head. You read on the BCC site, you know, get your arm right round the back and do all these things. So I was keen obviously to get better and get back to fitness if you like and for everything to heal properly. So I did exactly what they said. Day three they discovered I had this nerve damage and that was only, again you don’t know what to expect. I mean, I originally had nerve damage right down my leg. Nerve pains, you know, just like, it’s like electric shocks and like stinging and burning goes on, you know. Like jabbing. As if somebody’s pricking you with hot needles kind of thing. You know. And it was, you know, the surgeon had come in and how was I? And I said, “Oh, you know, I feel fine.” And this was, of course you’re getting all the jabby pains going on with everything healing in there as well. But, I said, “But I can’t understand why have I got pain…” I had, right round my bottom and where I have it all the time is here. But right round my bottom I had it. Right down to my privates, here. I had kind of like a numbness round there. My back felt very, very strange. It was so swollen I guess and kind of numb. And I’ve still got numb areas on my back. But I also had all these pains going down my leg. But they’ve gradually lessened. And I thing the gabapentin has helped a lot. It’s a nerve painkiller, I guess it would be. I don’t know. It sorts out the nerves a bit.

 

Anyway, so it’s been a lot better since I’ve been on that but I still, a couple of nights ago, because I’ve done a bit of cleaning or whatever, I end up with ice packs here and on my back sometimes, you know, it gets that sore. Just to numb it, it feels better [laughs].

 

Yeah. And what are they going to do now. You mentioned you’d had more surgery.

 

I see my surgeon on Tuesday evening and I should be in again fairly quickly. What’s happened is I had indentations appeared about six weeks. And apparently that’s quite common. Because I do have a small implant in as well. And I saw the breast cancer care nurse on the Friday and I said, you know, she says, “Oh come up and I’ll have a look.” And she said to start massaging it. Now I’d not been told that before at all. So I was massaging it, you know, with the cream and by Sunday evening I’d, you know, started massaging it and I thought, “Well that’s really quite sore there,” you know.

 

And when I looked down I thought, “God that looks really strange.” Because this was all caved in here. And instead of just having a couple of little indentations here that looked really quite dark, the whole thing was dented in here sort of thing, you know. And seemed to have moved across. So I phoned and they said to come in and see [the surgeon] on the Tuesday evening, which I did. No, the following Tuesday, it was like a week and a bit later. So instead of going at my three-month assessment I went at two months. And he just took one look at it and he says, “Yeah,” he says, “the muscle’s pulled away. The back muscle’s pulled away from the chest wall muscle. So we’re going to need to reattach that.”

 

Right, so how …

 

But he said he wanted to wait until everything had settled down, because I’ve had a lot of contracting. I think, you know, I was quite athletic in my youth and dancing and things like that. And, even now just walking, it’s constantly, jump, jump, jumping. It still thinks it’s a back muscle. You know. So I don’t know if I’ve been given the right physiotherapy. I mean I’ve got a list like this to

Kath is pleased that, in time, women will be invited for routine breast screening from the age of 47. She feels that more information should be available to women about the symptoms of breast cancer.

I was delighted to get an email from the Breast Cancer Care website, they've called for, somebody had sent through a petition to get women screened earlier and they're going to start phasing it in April 2008. I don't know if you've heard.

 

Here in Scotland or...

 

I don't know, throughout the UK, different areas. I don't know what the hotspots are. But women aged 47, they're starting at, 47 or 48. think it's 47.

 

OK. I haven't heard that.

 

And it'll rolled out, and it, yeah.

 

Sometimes it starts here first.

 

Yeah, OK, right. Well I don't know where it is in the UK but if you go on the government website there's, you know, their response to this petition that was raised to say why can't women be screened earlier, you know.

 

But there needs to be more awareness out there that it's not just a lump you're looking for, it's changes to the nipple, it's this, it's that. It's this thickening area, you know. Or just a feeling that there's something's wrong.

Kath had all her tests on the same day and was diagnosed with DCIS after a fine needle aspiration.

So I got the fine needle aspirations done, which was an awful experience because the guy was speaking about rectal examinations as if I wasn’t there. And why I didn’t say anything at the time I don’t know, but it was pretty awful. And they did the ultrasound thing and I could actually see the thing. I did some nursing early on, it was my first career. Too soft to carry it on [laughs]. So I kind of knew what I was looking at. And I thought, “No, there is something there.” So I’d already started preparing myself for, “Well it’s at least a cyst, or something”, you know. Because you do keep telling yourself everything’s all right, you know.

 

They did everything that day apart from the mammogram.

 

And told you there and then?

 

Yes, not from the biopsy, from the fine needle aspirations they can tell how active the cells are. And he thought it was moving fast. It was very active, he said, then. You know.

 

And that it’s DCIS.

Kath was extremely worried about having general anaesthetic because she'd had problems with it in the past. She was having a mastectomy and immediate reconstruction.

Really, when you get diagnosed, you go through swings and roundabouts. Well I did, and I think a lot of women do that, you start immediately grieving for your breast but you just want to live.

 

Yeah. Just take your time.

 

[Tearful] So, no I was, I was very frightened.

 

Of course.

 

More so about the anaesthetic. I have a very low pulse rate, an unhealthily low pulse rate and BP and I always crash. I’ve had a few operations in my life, various little things and they always have a problem with me in recovery. So that was what worried me, because it was like a six-hour operation. And I was desperately worried about embarrassing myself. You know, that they would have to put me in a straight jacket to get me down there. Because I just didn’t want it to be happening. But I was fine.

 

I cried when he put, my best mate [friend’s name] came with us as well and [my partner] to the hospital and when he was marking me up that’s when the tears started then. But they don’t give you a pre-med up here. Well, at least I didn’t get one. I did ask for it, but they said no, couldn’t have that. Maybe that was because I didn’t want the operation, I don’t know. But anyway, so I went down but I was actually joking with them before. But that’s just the way I am when things are difficult, I’d kind of tend to joke about things. And then woke up afterwards and that’s just been it. You just have to get on with it after that.

Kath was anxious because her breast felt different, but wondered whether she was just imagining things because she'd been depressed.

Well I was suffering depression last year. And I ended up thinking that I could feel a different area in the breast, not a lump. Just, it just felt a little bit denser I would say. Kind of like a line of it. And I spoke to my partner. Got him to check. I got my best friend, we’ve been friends since we were thirteen. Sounds a bit strange but I got my friend to check as well. Nobody else could feel anything, only me.

 

So I’d convinced myself that I was just being paranoid, you know, because I was thinking a lot of black thoughts at that point in time anyway. But I got to the point where it wasn’t just checking like every week, it got to be every day in the shower. And then it got to be sitting watching television with my hand [laughs] up my jumper, checking it out. Still, you know, just got to the point where that was it.

 

I went to the doctor to get the repeat prescriptions for my depression medication. Mentioned to my GP at the time who was actually a locum, I didn’t know the girl at all, quite a young woman. So she checked me out. I says it’s probably nothing but … She couldn’t feel anything but she did refer me for a mammogram. Now, in [place name] what they do is, you get referred quite quickly. So this was through the NHS. And went for the mammogram a couple of weeks later. Didn’t tell anybody, my partner, friends, family, anybody. Went for the mammogram. I got called back into the room and they did both breasts again.

Kath wanted more information about the kind of DCIS she had. She would have liked a copy of her pathology report and to talk to other women with DCIS before surgery.

The care in the hospital was very, very good. And it turned out that I had high grade DCIS, widespread. It was behind the nipple as well as being right across here. It was all round here. So, you know, they’ve done the right thing with me, you know. And it was starting to, micro-invasion they said. A couple of areas of micro-invasion. But what confused me afterwards was that I didn’t get the full results, the full pathology results because they wanted to kind of get it out of the way before Christmas I think. So I went in and he’d literally had a phone call from the path lab that day. Went in and saw him in the evening and he said, “Well, you know, you’re clear da, da, da, da, da.” And you’re just so thankful for that then, and still not feeling very well and very, very tired.

 

So I think it was after New Year I phoned the breast cancer care nurse, went to see her and asked to see the pathology. They weren’t keen to let me to see that, I had to really insist on that. I’ve not been given a copy of it and I would have liked to have a copy of it. Because again, you don’t take it all in. I took my mum with me that day to get all of that.

 

But not enough information. I mean, I actually had to, they didn’t tell me about anything, the Breast Cancer Care thing, the website has been my Godsend. That’s where I’ve spoken to people. I wasn’t put in touch with anybody. I don’t, luckily I don’t know anybody that’s had cancer. Friends, family, anybody. Never mind this kind of breast cancer, you know. And it would have been extremely helpful to have spoken to people about this before going through everything.