Pam - Interview 17

Age at interview: 55

Age at diagnosis: 53

Brief Outline:

Pam was diagnosed with DCIS in 2005, aged 53. Her mother had also had DCIS and, because of this, Pam had already heard and read about it. Pam had a wide local excision and radiotherapy, and is taking tamoxifen for five years.

Background:

Pam is married and works voluntarily for a charity. Ethnic background / nationality' White British

More about me...

Pam’s mother was diagnosed with DCIS when she was 83 but, after a wide local excision, doctors found that it had actually been invasive breast cancer. She then had a mastectomy. Because of her mother’s experience, Pam had already heard of DCIS and had looked for information about it when she was about 48 years old.

 

Also around this age, Pam started getting breast pain and was referred to a breast clinic by her GP, where she had her first mammogram. The breast pain turned out to be harmless and Pam next went for a mammogram at the age of 50, when invited for routine screening on the NHS Breast Screening Programme. Although she was recalled afterwards, the results were clear.

 

At 53, Pam had another routine mammogram and, again, was recalled. After tests, she was diagnosed with high grade DCIS. She felt shocked and angry and thought that, like her mother, she would have to have a mastectomy, and was extremely anxious about losing her breast. She was reassured by her doctor that she would not, and had a wide local excision followed by three weeks of radiotherapy. Pam was also prescribed tamoxifen for five years. 

 

Pam was interviewed for the Healthtalkonline website in 2008.

Information helped Pam cope better. She read as much as she could and also found the monthly phone calls from the breast care nurse helpful.

Then she [breast care nurse] says, you know, “Will it be all right if I phone you up from time to time to see how you’re doing?” And they do. And they let you talk and they ask if there’s anything more that you want. So that was very good. I found that very helpful. And so I sort of got lots of phone numbers and things that way.

 

And when he [consultant] said to me, “Go away and research this now” because he knows that’s the kind of person I am, actually the lady at BUPA, she said to me, I said, “Some people don’t understand my need to know. A lot of people think, you know, you’re better off not looking into it too much, you’re frightening yourself. Don’t get reading too much. You don’t want to know too much.” And I said, “I am the opposite. I feel more in control if I know. I want to go into this with my eyes open. Make my own choices. I want to feel, I don’t want to feel afterwards, ‘Oh, if only I’d read that, if only I’d looked that up.’” I could have gone down a different route and it’s too late now because once it’s cut off, it’s cut off.” Everybody I came across I was questioning, which was the same with my mum, that’s why I knew so much.

 

And she said to me, she’s the first person who’s every said it, she said, “You’re obviously a person who feels more in control if you go seeking information.” She said, “Some people do, you feel that you’ve got some control over this.” And I said, “You know, you’re the first person that’s understood that.” Because up to that point most people kind of, “Ooh, don’t read that, you don’t know what you’re reading. Oh, that’s too technical.” You know, or “That’s going to worry you, that’s going to frighten you.” And I thought, “No it’s not. I need to know.” And she understood that. Plus the fact that her own sister had had breast cancer, so she was a good one to talk to.

 

And I was talking to her about things like the scar and what I’d look like and she said, “Well my sister looks like this,” and, you know, she was reassuring, because she’d actually seen her. “And it’s not too bad, she still wears a low neck dresses,” and all this sort of thing. I think that’s the kind of thing that you want to hear from somebody who’s actually been through it or has a relative that’s been through it and can say, “I’ve seen the scar, I’ve seen her still in her nice dresses.” And, you know, it helps you get the things into perspective.

 

So they were very good. She was very helpful. And one of the other organisations was Breast Cancer Care who I spoke to. And they sent me leaflets and pamphlets and things. And one of the ones that they sent me, it was Cancerbackup I think, sent me one on radiotherapy. And I started reading that.

Pam's biopsy was delayed because she wanted to see a doctor privately, that she had been treated by before, but he was away.

I remember, you know, he [doctor] said, “Well we’ll have to get the biopsies, the next stage.” He said, “We take these things in stages.” And he explained the various stages and the next step is the biopsies to find out exactly what we’re dealing with. And though he was a doctor, it’s a surgeon that authorises the biopsy. And my surgeon that I wanted to see, the man that I’d seen with the mastalgia and liked, was away on holiday and wouldn’t be back for about a week. So what was suggested to me was that I come back and see my GP and see if the GP could do anything to get the ball rolling, the idea being that it would be done and on the surgeon’s desk for when he came back off holiday.

 

So my husband drove me back home and we went straight round to the doctor’s. Luckily a surgery was on, and by then I was in tears, it was just starting to kick in. And I saw the receptionist and she said, “Oh, for something like this obviously you’ll have an emergency appointment, we’ll see you tonight.” And she offered me a choice of, my usual doctor wasn’t around but there was a lady doctor available, there was a male doctor available. I just opted for the male doctor, I wasn’t bothered. I just wanted to see somebody.

 

So saw the GP anyway that evening and he said, “Right, well, what we’ll do”, he said, “I will fax the hospital.” Bearing in mind nobody had got any notes or anything to refer to. Now he was going purely on what we told him. He said, “I will fax the hospital and see if we can’t get a consultant to authorise the biopsy.”

 

He [consultant] said, “As your other consultant” – the man I wanted to see – “is on holiday”, he said, “really, you know, he ought to be part of this meeting and he won’t be here.” He said, “So, you know, are you going to stick with this other consultant?” And I said, “Well yes I want to go to him” because I knew him a little bit and I wanted to go to the other hospital because I’d been there before. So it basically came down to him sort of saying, “Well I can’t help you then.” He wanted to be the consultant, he wanted me to have it done there either NHS or privately there, and he wasn’t prepared to just rubber stamp the biopsy. If he got involved, he said, it’s most sort of irregular to have two consultants involved with one patient, you know. It’s only sort of on very serious sorts of cases, something nobody’d ever heard of or seen of before when you get two consultants treating one patient. And, of course we didn’t know the protocol or anything then. And I’ve never been in hospital for anything at all, major or anything, then we didn’t know what the protocol was. And, I think I came and upset the doctor a little bit because he was kind of, you know, “If you want me to do this you come to me. You know, if you want to go with the other person that’s where you have to go.”

 

So I said, “Well, I’ll wait then,” because this doctor would be back in a week’s time. And it was a bit scary because knowing you’ve got cancer in you, you want it dealt with promptly. But I thought, well a week, and they are saying it’s something minor, you know. So I said I would wait.

Pam said all the staff at the hospital were helpful and that the procedure was efficient. Staff were also happy to set appointments at the time that suited her.

I was going up there just before Christmas. And that department, I can’t praise them highly enough. And it was NHS. And it just ran like clockwork. And it was down to all the staff because the car parking at [town] is a nightmare. And the attendants were so helpful, right from that car park attendant, helping you to park. And it all does become part of it. Because I was lucky, I’ve got a husband, we’ve got car, and they are very flexible on the appointments. They’re very good like that. He was finishing work anyway, sort of just after lunchtime, so the appointments were arranged for him to come home, run me up there. All I had to do was get in the car and go. But for some people, I mean, we were talking to people who were waiting for NHS transport and they were actually late turning up, or they didn’t turn up. Or they were on the road, because they have to drop half a dozen other people off. And they were out for the entire morning, or the entire afternoon. Or biggest part of the day. With cancers, you know. And you’re stuck on this bus and waiting for transport, so I can see how it’s, it can be an awful problem if, if you don’t have your own transport or you can’t drive or whatever. Or somebody you can rely on to help you.

 

I was lucky. And they were very good about the appointments. “Do you want your appointments in the morning, would that be best? Do you want them in the afternoon? Would that be best? What kind.” Which you don’t expect with NHS. That’s more like private. You know, and I was quite surprised. I expected to be told, “You be here at 10 o’clock,” or whatever. “By whatever means or you wait for transport,” you know. And I wasn’t, I was being given these choices, which I thought was very good.

Pam had only come across DCIS because her mother was diagnosed with it several years earlier.

My mum had breast cancer when she was eighty-three. She’s now ninety-two this year. So hers was diagnosed initially as DCIS. And to cut a very long story short, when they took a biopsy, when they sent all that material off, they found that it had actually broken through into her breast. So therefore it was breast cancer, two very tiny areas of breast cancer.

 

So she had a lumpectomy. But she hadn’t actually got a lump. She had the lumpectomy, had a small area taken away. That’s the tissue that they looked at and that’s when they discovered that it had actually gone that bit further. So because of her age and because she didn’t want to be having radiotherapy, chemotherapy, whatever, they told her, she opted to have a mastectomy because of her age. And that was done and she didn’t have to have any follow-up tablets or any chemo or radiotherapy. None of that. So I actually looked into DCIS quite a bit for my mum because at that point in time I had nothing wrong with me.

 

How old were you at that time, if you don’t mind me asking?

 

Oh I can’t remember my age now but mum was, if you can do the maths, my mum was eighty-three. She’s now, well ninety-one. She’ll be ninety-two this year. And I’m fifty-six this year. So I’ll leave you to do the maths on that because I’m hopeless [laughs].

 

But obviously I was concerned and wanted to learn more about DCIS for my mum’s sake. Because we were hoping she wouldn’t lose the breast and also I did ask the nurses at the time, should I be concerned and my sister, I’ve got an older sister. I was told that there no greater chance of me getting it or my sister getting it than any other woman getting so we shouldn’t be concerned about that, because my mum had got it later on in life. Had she got it before she was 50 then, you know, we might have been looking at a family link. So that was what was said. These were doctors and nurses in [place name] because that’s where I’m from originally, that’s where my mum still lives. So this was all done at the hospital in [hospital name].

 

So I already knew a fair bit about DCIS because I asked my mother’s doctors and nurses, I read the posters, I picked up leaflets and, you know, I looked into it, as I say, from my sister’s and my point of view. So that all happened for my mum.

Pam was very concerned about the tattoo-like marks needed on her skin before radiotherapy and about her breast shrinking after it, a possible side effect of radiotherapy.

I started reading on radiotherapy and found out even more about how the breast can shrink. And the tattooing. And that was another aspect of it that upset me because I don’t, I mean some people have tattoos for decorative purposes and they like them. I haven’t got any. I’ve never wanted any. And I didn’t know at that point, I honestly had this idea that I was going to look like, you know, those join up the dots puzzles for children, where you join up all the little dots. I’m going to look like that. You know. And again, it’s silly because, you know, it’s your life, it’s your health and I’m thinking of all the cosmetic side of it. And I thought, “I don’t want all these dots on me. I just don’t want them.” And I was trying to find out how many dots there would be. I remember asking the GP. I said, you know, “What will these dots be like.” And he said, “It’s a tiny little dot of ink. And I said, “Because, you know, I’m not happy, I don’t want them. Is there any alternative?” And he said, “They use a clean needle”, he said, “don’t worry.” That’s all he was interested in.

 

I asked him [doctor] about the hardening, the shrinkage. And he said pretty much the same thing, “We don’t know how it’s going to turn out. It can happen.” I even questioned the nurse that was with him. I said, “You see ladies who’ve, before and after radiotherapy, you know, what do you think, as a woman, tell me what you think, does it look acceptable, does it look awful?” And she said, “Well, it varies.” But she said, “I would say it’s acceptable. And given that, you know, we’re trying to save you getting something far worse,” she said, “Yes”, because I wanted to talk to another woman. He was male.

 

And she said, “So, yes”, she said, “if it was me I would have it done.” But I was sort of teetering on the brink, what to do about this radiotherapy because on the one hand I knew I probably needed it or they wouldn’t be recommending it. But I didn’t want this shrinkage, I didn’t want the hardening. I didn’t want the tattoos.