Breast Cancer in men
Support from the breast care nurse and other sources
Many people appreciate having support when they first find out they have cancer, whilst they are having treatment or when they are beginning to recover. Men talked about several sources of support that had helped them through difficult times. The most important source of support for most men was their family (see ‘Support from family, friends and colleagues’).
Many men spoke about support they had from other sources, including their doctors and particularly the breast care nurses. Usually, a breast care nurse was present when they were given their diagnosis. The nurses typically offered support by telling men what to expect next, offering to answer questions, being positive and reassuring them that they would be given support throughout their treatment. Eddie said his hospital consultant put his mind at rest and allayed his fears. Steve talked about how the breast care nurse explained everything to him and he felt he had “more or less 24/7 support” from her which at that time was very important to him. He said in his mind “she was a friend at the time”. BT’s nurse offered to come to the house a few days after his diagnosis to answer any questions that he and his family had. Other men were also very positive about the breast care nurses.
Stuart said the breast care nurses were excellent and very knowledgeable. He felt he could ask...
Stuart said the breast care nurses were excellent and very knowledgeable. He felt he could ask...
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I mean, the breast care specialist nurse was sort of saying, you know, this is what would happen and the surgeon was saying yes, you could have an operation and, you know, if the biopsy comes back as positive then you’d have to have an operation and various treatments from then, but they didn’t sort of go into too much detail at that point, but then they also said that there’s a support network here for you, you know, you’re not alone and this sort of thing. It was very good, and… the breast care nurses up there are excellent as well, cos we had, there was a couple that dealt with everybody that had breast cancer and… their way and their knowledge and everything like that was, you know, exceptional. And if we ever had a problem, we could go to her and just discuss it with her or ask her anything and this sort of thing, so that was good.
OK, you said at the time that obviously the breast care nurses, you obviously sound as though you have a very good relationship with them. Did they, what support did they offer you at the time?
Well, they sat down with myself and my wife, [name of nurse] was her name, and she just sort of went through everything and said “look, if there’s anything you want to talk about, if you don’t think about, if you’ve got a question now then you can always ring me up and either leave a message or if I’m there, speak to me” and it was just the fact that they were so helpful and… made you feel as though they were there all the time for you and they probably weren’t, cos they had so many people they had to deal with but it was just good to know that they were there and they knew so much, you know? They weren’t sort of somebody very new that didn’t have experience of all the different types of breast cancer and people and this sort of thing.
Tom felt lucky to have a 'wonderful' breast care nurse who made him feel like a personal friend....
Tom felt lucky to have a 'wonderful' breast care nurse who made him feel like a personal friend....
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She is wonderful. She's wonderful. And everyone thinks she's wonderful. And - I don't know how common this is. But she's obsessive in the best possible meaning, and has an extraordinary memory, and deals with you know hundreds or thousands of patients and manages to make everyone to feel as though she's their personal friend.
It's a real gift to be able to -
And she has certain extraordinary gifts. So I’m, I think I was very, very lucky. And speaking to lots of other patients, she's held in extremely high esteem. So she was pioneering an approach to ringing back people on a regular basis and following them through the drug treatment.
A few men did not have much contact with the breast care nurses. Eric only saw them “once or twice”. Tom said he only saw the breast care nurse when he went for check-ups but he would have liked to have had more support from them. Some men chose not to take up the support offered by the breast care nurses.
RG did not take up the offer of support from breast care nurses because he wanted "minimum fuss"...
RG did not take up the offer of support from breast care nurses because he wanted "minimum fuss"...
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So after you had that initial appointment with the consultant, did the breast care nurse see you at all?
I was given, I don’t know whether I did right in this actually. But I was given various telephone numbers of you know, of breast care nurses and such like, you know that I could get in touch with, pre-surgery and after surgery and all the rest- and during chemo as well. But I didn’t take any of them- cause I- I think really, top and bottom of it is you know I just wanted to get through it as- with the minimum of fuss and get back to normal if I could, without you know. I mean I’m sure that if I’d gone to see them they would have been very kind and very supportive and, possibly actually would have helped you know in certain- just to explain things really. But as I say, I just felt that I wanted to, just get back to normal, you know just do what I’d normally do.
Many men felt they could still have benefited from other forms of support and many would have liked to have been able to talk to other men with breast cancer (see ‘Support from groups and other people with cancer’). Sometimes the breast care nurse or one of the breast cancer charities had been able to put a man in touch with another man in the same situation.
David said it was a relief to talk to a man who had had a mastectomy and chemotherapy. He felt...
David said it was a relief to talk to a man who had had a mastectomy and chemotherapy. He felt...
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so… we got on with Breast Cancer Care and I heard about this peer support thing which is you can, you know, contact breast cancer... and they will put you in somebody, cos you’re wanting to know, I couldn’t find any answers to my questions. I wanted to know another man who had gone through this, but men are few and far between in this country. Only places where I could get information was America’s got a good site, Australia’s got a dedicated site for men with breast cancer, and… too far away. Can’t talk to men in Australia and America, I don’t know anybody, and eventually I went through this peer support with Breast Cancer Care and got in touch with a guy in [place] in Scotland, believe it… a guy called [man’s name]. And what a relief it were, talking to a guy who’d gone through exactly the same things that I’d gone through, who had had a mastectomy and who’d had chemotherapy and who’d had, he could answer all my questions, you know? And it was really good. Liked the idea, so I sort of, well, I’ll volunteer for this, you know, for this… but just been only a few months into the… well, you’ve got to be twelve months before you can do this.
You sound as though you’ve got quite a strong group of you through the breast cancer (overtalk)?? it seems like there’s quite a group of you?
Yeah, they’ve gone now, but as I say, you only… because we’re, you know, one in Scotland, one in south, one in Manchester, one in… you don’t see them. It’s not like, you know, there might be ten women in your town or twenty women in your town, but when you’ve only got one, you know, you can’t get together, can you? You can’t have a meeting… all coming up from Cornwall to have a chat [laughs].
RG turned down the offer to meet another man with breast cancer because he thought it wouldn't...
RG turned down the offer to meet another man with breast cancer because he thought it wouldn't...
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Have you ever met another man who’s had breast cancer?
I was given the choice, and I decided not to. You know initially, but, one of the nurses said “oh I can put you in touch with this chap”. Anyway I decided not to.
Why?
I wasn’t sure that it would help. You know I think if you’re fairly self-reliant, then you sort of feel, it’s not really going to change the situation.
So even now you wouldn’t want to meet another man?
I wouldn’t, I wouldn’t not want to. But I wouldn’t deliberately go out of my way to, you know.
Some men felt they would benefit from other forms of formal support. Counselling had helped a couple of men.
Stuart attended counselling with his wife. He found it helpful to talk through their feelings and...
Stuart attended counselling with his wife. He found it helpful to talk through their feelings and...
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We also had counselling as well, which helped, so it was another person that you could, you could fall back on, you could speak to on a regular basis. We had that sort of every week for a certain period of time, both myself and my wife, yeah.
Together or separate?
Yeah.
Together?
Yeah. So we could sort of talk about our thoughts and fears and… and, you know, going forward, what would happen, how you’d feel, how to get over that, that sort of thing. So that was really helpful. I think at the time… it’s just good to talk to different people about what you’re thinking sometimes, rather than keeping it to yourself.
Mike attended counselling provided by a Jewish organisation.
Mike attended counselling provided by a Jewish organisation.
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Did you ask for the counselling or was it something that was offered to you?
No, I asked for the counselling. There is a Jewish organisation that I go for the counselling, it’s not a National Health thing, because I knew it would be all Macmillan counselling. It’s just that this particular organisation, about 15, 20 years ago when I was doing charity work, we used to support them in their days when they were pretty small and they would counsel, it was solely for cancer people, nothing else but cancer people, and over the years I suppose we’ve supported, I can’t remember, five or six years, and then obviously I left the committee and then I decided to, you know, try them, voluntary group, if you want to donate, you donate. If you don’t want to donate you don’t have to donate, you know? It’s not asking for any money at all, they don’t. I’ve found them very, very, very good.
Was it like a course of counseling or was it something that you can dip in and out of?
Well, no, she… funnily enough, she… the lady who I see, she wants to see me every couple of weeks and quite honestly, I keep saying to her, people are gonna start talking about us, because I really don’t know what now to talk about. I feel that, you know, I’m over the worst. I don’t know why you still want me to come along. She says “well, I know, we’ve still got things to discuss.” I said “well, if you don’t mind me coming along, I don’t mind going”, because one, it takes up a couple of hours of the day and, you know, at least I can talk to somebody and it just makes me more aware of things.
Some men turned to other NHS services for support. One man went to see a psychiatrist for a while but stopped his appointments because he felt that he was being asked to talk about things that were unrelated to his cancer. Another described becoming more anxious about his health in general after his diagnosis. He had found his GP practice very supportive and attentive when dealing with any of his concerns. Sometimes it was helpful just to know where someone could go to talk if they wanted to.
Alan had been introduced to a support officer at the hospital in case he wanted to talk to her.
Alan had been introduced to a support officer at the hospital in case he wanted to talk to her.
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Were you offered at the time, any support such as going to support group or speaking to someone else about it?
Yeah, they have a lady at [name of hospital] who’s there most of the time, there’s a room for coffee, and she’s a sort of support officer. I was taken there and shown that and if I wanted to come. And in fact, I was having a chemo- waiting for chemo and the nurse said, “Do you want to go and talk to a support officer”. So I said, “Well all right”, you know, Especially when the lad next door, he’s about twenty and he’s got to have another ninety chemotherapy sessions. So I thought, rather puts me in perspective. [Laughs] You know, he was bald and you know, he looked, he looked ill. I don’t know if I looked ill or not, but he looked ill. And I thought, well, I used to sit there on a Monday afternoon, have to look around and I’d think nothing wrong with you lad. [Laughs] Compared to what other people have got.
Yeah. So when you were getting your chemotherapy, could you chat to other people? Could you all sort of- or were you in a little bay?
I was probably as far away from the next person as I am to you, but we were side on, that way. So you could talk to the nurse obviously cause she was watching you but towards the end, after I’d had a couple of sessions I used to wander off, cause they knew I would sit there and, fall asleep. But yes.
For men with strong religious beliefs, their faith or those who shared their faith could be a tremendous source of strength and support.
Mohammad said his faith was reassuring as it taught him that he would not die before his time.
Mohammad said his faith was reassuring as it taught him that he would not die before his time.
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What would you say to somebody who has just been diagnosed and they’re worrying now?
If somebody have, need help, then I go tell them, ‘Don’t worry. This is curable’, whatever you are. And, I know it’s very stressful but, if you take it lightly then you feel comfortable. If you take it serious, you’re feeling very serious illness. If you take it lightly, you know the problem, problem is there but if you think lightly, okay, five year, ten years at times why are you taking it serious? For example, my end is tomorrow, if I’m thinking I’m dying today. I’ll never die today because my end is tomorrow. Because this is my belief. That’s why I’m very strong for that belief.
And was that your whole attitude towards the cancer?
Yes
And has that attitude come from just the way you think about things or your religion or-?
My religion and my thinking as well. Because you know when I search in Qu’ran and… I’m feeling very comfortable. And my belief when I- okay Allah said this once, “When you die you die- no you never die before the time”. So make me more happy.
It’s reassuring.
Yes.
Robert said his faith has been a source of strength and that the church had played a big part in...
Robert said his faith has been a source of strength and that the church had played a big part in...
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You sound as though you’re very well supported in your own community?
Yeah, that’s right. If I hadn’t had that, I might have wanted some support – but no, I was well supported. It was quite – it was actually almost overwhelmed by, you know, the care that I had from everybody. I really was. It was quite a sobering experience, really, you know? And as I say, it made me think of my mortality you know – but no, I was fine, and people were so good to me, so good to me. I like to think, myself, that I was positive about it, you know? I didn’t sort of, I never felt sorry for myself – no. But you know, it was certainly was a sobering experience, but people were very good to me they really were. The hospital and just my family and my friends in the church and everything – yeah, they were very good to me, and that helped tremendously – of course it did, of course it did.
Right – so your faith has been a major strength to you?
Oh yes, there’s no question about it – and the church that, you know, has been a big factor in caring for us as a family. Not just… Caring for [name of wife] too, they’ve been tremendous.
That’s good.
Uh huh. So I mean that has been the major thing, no question about it. Coz, you know, if you’re getting older, a bit, and you don’t have faith in the future, you know, then things aren’t quite so good, you know? If you’re just living for this life and you’re getting on a bit, you know, I wouldn’t like to be like that. No.
Michael had great support from family and friends who prayed for him in church. He was able to...
Michael had great support from family and friends who prayed for him in church. He was able to...
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And so, did you feel yourself that you had any of that support? Were you able to talk to other friends or (overtalk) breast cancer?
Yes, one I… once it became fairly public knowledge because I didn’t actually hide it there was several ladies who, among our group of friends, who actually said, “oh we’d had it”, you know, and “I had it and I’m fine now so don’t worry about it and that’s… we’re still praying for you in the church” so that was you know, that was all more support. My wife was very supportive and my family who were really I think at one point, wanted to wrap me up in cotton wool and pack me off somewhere. That’s how I think they wanted to do.
Did you find that difficult or…?
No, no, no, no, they’re… I’m very blessed with my family actually, they’re lovely you know, two lovely grandchildren as well. So, yeah, it just… I think it probably would have been harder if I’d kept quiet about it and not actually told anybody and said, don’t tell anybody except the family.
So, did you consider that at all or did you
No I didn’t actually… I’m afraid…
…just decide almost immediately that you wanted to just tell people?
Oh, yes, yeah. Well, people you know, when I said, “I was going to have an operation”, they said, “What for?” And the men’s group that I belong to in the church, they were very supportive and (cough) they… everybody was actually. I didn’t even actually find anybody embarrassed to talk about it. I suppose if they had have been they would have spoken about it. Yeah, I found being open about it was a lot easier. I’m like that anyway, why hide it?
Last reviewed June 2017.
Last updated October 2013.
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