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Breast Cancer in men

Peer support and support groups

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’) and many men had also been given valuable support by their breast care nurse and other people (see ‘Support from the breast care nurse and other sources’).

Although family and friends and health care workers can all be very important in helping to support someone with cancer, very often people also want to talk to someone who is in the same situation as they are. Because breast cancer in men is very rare, it is very unusual for men to have come across another man with breast cancer. Bill was the only one to have personally known another man with breast cancer before he was diagnosed himself. Some men felt strongly that this was another way in which they might be at a disadvantage in relation to women with breast cancer. Many said that they had not been offered the chance to go to a support group, although some of them wished that they had been.
 

Dan would have liked to have gone to a support group but the opportunity to go to one was not...

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Age at interview: 52
Sex: Male
Age at diagnosis: 50
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 Would you ever go to a support group with women?

 
Yes, why not? Yes, yes.
 
And was there not a group that you could have gone to?
 
I’ve never been to a group.
 
You haven’t? There wasn’t one in the hospital for breast cancer?
 
I don’t know.
 
No-one suggested it?
 
No, nobody.
 
Would you have liked to have gone?
 
Yes.
 
Why do you think no-one said?
 
I don’t know. Maybe they were only women there, so this might think, well might not mix with a woman – but nobody suggested to me.
 
But you would have been quite happy going?
 
Yes.
 

Ben would have liked to have gone to a support group but what he really wanted was the...

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Age at interview: 68
Sex: Male
Age at diagnosis: 63
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Now, I see at the back here there’s a breast cancer support group?

 
Yes.
 
Did you ever go?
 
I haven’t been, no, no.
 
Why not?
 
Not having the time really, because of hospital appointments. They are in the evening on a Wednesday, I think, but generally we’re doing things.
 
Would you have liked to have gone?
 
Yes, and in fact… I got the impression, though, that it was all ladies there. So...
 
Did that put you off at all or…?
 
It didn’t put me off, but I wanted to relate to men. My idea was for me to go along and try and encourage men to get… and I’ve always been looking for a way of getting to get men to examine themselves.
 
 

David S would like to have known more about having breast cancer as a man when he was first...

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Age at interview: 60
Sex: Male
Age at diagnosis: 51
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Did the hospital ever say to you about support groups for you to go?
 
No. There was some leaflets for Macmillan, Cancer Bacup or something. Apart from that, no.
 
But you didn’t meet anyone else? So, like, the…?
 
No.
 
Would you have liked to?
 
If I could communicate with them then yes.
 
You would?
 
They said, did I want to talk but I would have had to find it for myself.
 
Breast cancer care, they do a peer support, but it’s telephone, I think.
 
By phone
 
Did you get a chance to talk to another man?
 
No.
 
No?
 
No.
 
Would you have liked to?
 
At the beginning yes.
 
Why at the beginning?
 
Before the operation, to ask about the operation.
 
To get more information?
 
I wanted to know what the scar would look like
 
 
A few men thought that they would not have wanted to go to a support group, even if this had been offered to them. Interview 07 said he was ‘no one o’ them kind o’ guys’ and wouldn’t have had the energy anyway. Robert B said he was fine anyway and ‘well supported’ and Steve didn’t feel he needed more support because he had not needed to have either chemotherapy or radiotherapy. John said that he would have struggled to find enough money for bus fares for anything extra because he was unemployed and finding money very short. Some men were also conscious that they would probably be the only man in the group.
 

David wouldn’t have wanted to go to a breast cancer group. He thought he might ‘suppress dialogue...

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Age at interview: 72
Sex: Male
Age at diagnosis: 71
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 When you went to the hospital, did the nurse ever offer you a chance to go to any support groups?

 
No, I don’t think so. I wouldn’t have went to a support group, anyway – I don’t think I need support.
 
Why not?
 
Because I’m strong enough to do it on my own.
 
You don’t think sharing ideas or symptoms?
 
Yes, but I have to share ideas and symptoms with any males, and there’s very few of them around.
 
So if she said, “I’ve got a male support group,”
 
Mm, yes.
 
Would you have been interested in going to that?
 
I probably would have went to see that.
 
What do you think the differences would be between a women’s group and a men’s group?
 
Women, it’s much more intense – it’s a tremendous problem for a female, having breast problems. For a male, it doesn’t bother me at all, not in the slightest – not interested.
 
Do you think you’d have felt you were intruding a wee bit?
 
To females? Yeah, I would probably feel I was intruding a little bit. I would probably, if I was in a female group, they probably wouldn’t be the same. I would probably suppress their dialogue.
 
Because, I suppose you’ve had breast cancer, just like they’ve had breast cancer.
 
Yeah, but my breasts don’t mean anything to me at all.
 
They don’t?
 
No, nothing at all.
Some men were in two minds about whether they would have gone along to a support group if they had had the chance to go. Often they wondered whether they might have been able to help others if they had been part of a patient group.
 
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Tom would probably have gone to a support group if it had been offered but he didn't think he...

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Age at interview: 71
Sex: Male
Age at diagnosis: 70
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 But they didn’t offer you the chance to talk to, in a support group with like people who have had breast cancer?

 
No because I think I was a one-off.
 
Yeah. So they just didn’t offer it?
 
No. Well, I wouldn’t have expected them to really. Because they’re run off their feet the poor fellows. I mean you know there’s six in our room. I don’t know how many nurses there are on, but on the night-shift there’s usually only one, that did the full ward. Not just our six, but like I think I’d worked it out there was one or two side wards with one and two in, there was thirty four beds on ward [ward letter].
 
Would you have liked to have gone to a support group?
 
I don’t know. I probably would have gone if somebody said go, I would have gone. But, I think if it had been left to me, no I don’t think I would have bothered. But as I say I’m an introvert. The one reason I’d accepted that I would do this was because I’d actually thought of asking the hospital, when I went, if my experiences would be any good to anybody else, because as I say it’s a small return, for what they’ve done for me.
 

Bernard might have gone to a group if it had been offered but he wouldn’t have ‘pushed’ his way...

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Age at interview: 59
Sex: Male
Age at diagnosis: 56
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 So it sounds as though the sort of support you were getting, from all these different places, you didn’t feel that you had to go to a support group with other people that have experienced breast cancer?

 
No.
 
No?
 
If somebody had says to me come up and went like that, “Look there’s a thingmy for breast cancer, people that’s had breast cancer, it’s on a Tuesday night, would you like to go along?” I’d a went along then, if I’d a been invited but I wouldn’t a pushed my way into it, you know what I mean? Or if, or if there’d been an advert in the paper saying ‘come along’, I might a done it. But I wouldn’t have, I wouldn’t have phoned up places to see if there was a meeting somewhere, I wouldn’t have done that you know?
 
Why not?
 
Well, I can’t answer that, I just wouldn’t have done it. You know.
 
Is it because maybe it would have been women or-?
 
Oh no, not at all, no, no. Just- I don’t think me being there would have made it any more important or whatever, you know or just made any difference you know.
 
To you?
 
Or to anybody else that was there maybe you know.
A few men had gone along to a support group for people with cancer. Stuart went to a support group at the hospital but the other patients were all women and much older than him and he felt that he did not have much in common with them apart from breast cancer. Bill had also been to the local breast cancer support group and said the women there were “very supportive”, but wished there could be some “collective voice for men with breast cancer because there are so few of them”.
A few other men had had positive experiences of going to breast cancer patient support groups.
 

HGV King’s breast care nurse invited him to a group for younger women with breast cancer. He has...

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Age at interview: 51
Sex: Male
Age at diagnosis: 50
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 Ah, yeah, no… as I say, I’m going though how it affected me, how it, mentally, affected me, but I think if I… other cancer sufferers, if they sat and… if they wanted to discuss it, as I was saying, this disease tends to… you meet so many other people that are going through it, ladies, not so much men, but you meet a lot of ladies that are going through it, and as I say, that brings me back to where… I feel as though I can discuss things easier, more comfortably with the ladies than I can with like a gentleman that’s sat there. If it’s a gentleman going through breast cancer, that’s a different issue, then I’d like to talk to him, but no, then you’ve got… okay you’ve got the other cancers as well but then you feel… it’s like that lady I was mentioning that suffered breast cancer then, now going through bone cancer, a secondary cancer, I really feel for her. I praise her and I look up to her because she’s so strong, she’s strong-minded and she’s… as I say, she’s not after the sympathy, she’s after the support, and we all give her the support, even though when we hear her stories, we’re sobbing, we’ve got tears all running down our eyes but I never, ever feel uncomfortable when I’m in their presence. I can sit, I can cry with them, I could go to the meeting or… with the group that I attend once a month with all the ladies, there’s no other man that goes, I’m the only gentleman there. But I can sit with all those ladies and I can tell my stories and listen to their stories and I can have tears roll down my eyes, and there’s no embarrassment there whatsoever.

 

BT found that everyone at his group supported each other. They were going through the same...

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Age at interview: 65
Sex: Male
Age at diagnosis: 64
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 Oh yeah. I mean everybody in that group-

 
Men and women.
 
Men and women. Everybody were all supporting one another, and when you were doing your individual things, you know, everybody’ll come out and watching and encourage you and things like that. And that is the beauty of it, is that the people, I suspect not only with breast cancer, but it’s probably the same with all cancers, the people that you come into contact with, have been there, done that, and are going through the same traumas and the same feelings as what you’re going through, and can relate to those feelings. Where, as I say, a lot of people that haven’t had it, obviously sympathise and what not, but you know unless you’ve been there, then obviously it’s a different ball game, you know so-.
 
I mean you talked about the [Breast Cancer Care] fashion show and the camaraderie there, but do you think in the wider sort of breast cancer group that that’s true between men and women, do you think that-?
 
I think between the- yes I think everybody-
Derek went to a breast cancer centre but he did not like to go too often because he didn’t want to be a nuisance.
 

Derek had been to a breast cancer centre but tried not to go too often because he felt a bit self...

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Age at interview: 69
Sex: Male
Age at diagnosis: 68
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So did you get any offer of support, you know going to a support group or anything like that?

 
Well yeah, I mean this is it, I mean I turned… I said about the Lodge, it’s attached to the hospital and I mean it is strictly you know for breast cancer, and, yeah I mean they, they sort of try and organise things, and you go, I mean ‘cos they organised it I went up and had a couple of massages and that after the operation. So, and they’re there again if you want to you can always go in and see them, but as I say, I, I try not to go too often because I sort of, I don’t know, I’m a bit self conscious about asking people, from the point of view that I think oh I’m being a nuisance, so rather than being a nuisance I don’t ask, and invariably it goes away, whatever it is (laugh).
Some of the groups were more like a fundraising group than a support group, but they gave men the chance to meet other patients with cancer and sometimes to try things they were unlikely to have been offered otherwise.
 

Derek goes every month to his group which is mainly geared towards fundraising, although they did...

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Age at interview: 65
Sex: Male
Age at diagnosis: 57
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All my friends and relations, they all… support. And I say, you know, we joined a cancer sort of [name of group] they call it and we go there once every month and it’s all ladies as you probably know that’s had breast cancer. There’s maybe two men that go there and we just join in and do what we can. I call it payback.
 
Is it a support group?
 
Yes.
 
It is?
 
They have their own… most of the ladies were in the infirmary. They have paid and bought for that room, all the facilities in that room, and also how they’ve paid for the doctor to go in to find out things, pay him on a basis. No, it’s very good, it’s very successful, yeah.
 
And who told you about that group?
 
Do you know, I don’t know how I got into that. Maybe one of the ladies down at the hospital down at [name of hospital] that probably told me, and it’s just… it’s once every month and we just all go and meet and express everything, what’s happened and try and… events going to raise money all the time, which we do do, catwalks, fashion shows which I’ve done two, third one next year which I enjoy, you know? And buy tickets and it all raises funds for what we think’s a more worthy cause.
 
Do you talk quite freely within that group about these sort of things?
 
Not particularly. It’s not that type of a thing. Unless it comes up that somebody in the group has had something like a husband or they know people that’s had something like that, it’s mainly for fund-raising, the group that we’re in. Mainly for fund-raising which they do, you know, they have garden parties, they have jewellery shows, fashion shows, they have people coming to the houses.

 

 

Robert went to a breast cancer club for a while. There were some men there to support their...

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Age at interview: 58
Sex: Male
Age at diagnosis: 54
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I talked to a lot of interesting people, a lot of interesting, and the experiences that they’d had. I probably was the fittest of anybody who’s ever in the place you know the women were, well there was suff…, you could tell they were suffering a bit. And one woman who organised a Pink Breast Cancer Club, I’m not sure what happened to her in the end... I’m not sure whether she’s still with us or not.

 
So is that a sort of support group or a fund raising group?
 
It was a fund raising group.
 
Did you ever think about looking for a support group of any, of any description?
 
Well I did join a support group for a period, sort of just, I’ve sort of let it drift a bit.
 
So was that like really, was that for people with breast cancer specifically?
 
Yes, yeah. They’d organised fund raising do in the, in the local hotels, and, that was, that was their main day, and then they’d have a… days out, but we never went on any of those. And we would go to the fund raising do and that was about it. And I would have ‘cos I was entitled to a, I had a pedicure… I used to have…
 
Did you (laugh)
 
Yes.
 
Did you enjoy that?
 
Yes.
 
And so when you went to that support group were you the only man there?
 
Eh, well ‘cos the women had their partners –
 
Ok.
 
…and that was it so, – but yes I was the only man… yes.
 
I don’t suppose if it was a lot of couples going along it then, people would, you wouldn’t necessarily know who was, who had breast cancer and who was a partner of somebody with breast cancer?
 
Correct. Yes.
 
So, but you say you don’t keep in, particularly keep in touch with that group anymore now.
 
No, no.
Tom had met a group of women who were taking Herceptin when he organised and ran a discussion group to help out at the hospital, and the group stayed in touch. He did say that, without this, he may have felt ‘sidelined’ because he had not been invited to any of the local support networks.
 

The people at Tom’s Herceptin group ‘clicked’ and wanted to stay in touch. He thought there was...

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Age at interview: 54
Sex: Male
Age at diagnosis: 50
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And you were telling me earlier that you still met up sometimes with your group of Herceptin ladies.

 
The Herceptin ladies, yeah. Yes that started because I… ran a sort of discussion group, to help out a bit of research that was going on at the hospital. And so I had a focus group effectively. And so we just stayed in touch with each other cause we also enjoyed meeting up.
 
So that was something that arose out of that, rather than being so scheduled for appointments for your Herceptin, at similar times to the same group of women-
 
One of the women was having Herceptin about the same time as me. But of course although the initial treatment was over an extended period of a number of hours, subsequently it became a quick thing and I had it in about half an hour and then I could go. So the chances of bumping into people at random were diminished. I think one of the women that I met up with, who strangely enough is not someone who I’m so in touch with now. She hasn’t been to the last couple of meetings. I did encounter in the day ward. But the others were put together by people that were doing research. So I’m not sure, I think it was just a convenience sample, I’m not sure they had anything in partic- because I remember we were all at different stages, we’d either finished it or just starting it or some had some characteristics, some- one I remember had another - was in a trial for another Herceptin type drug. Because her cancer had another sort of characteristic that could be targeted. And a whole range of ages, from, one who looks very young but she has an eighteen year old son I think, someone who works for Social Services in the city, but looks remarkably young, so she looks in her late thirties. I think she might be just into her forties. To someone who was in her seventies. Perhaps two women who were in their seventies. One of whom had had cancer twice separated by twenty years. So it was quite a spectrum. Everybody was very, very enthusiastic about staying in touch. And I think some of them belonged to support groups and others didn’t. But they just- thought we all clicked you know, so it was just- that’s how it worked.
 
Nice when these things arise sort of quite spontaneously like that.
 
But I think I was saying to you that there are in this locality a lot of support networks [for women], none of which I’ve ever been invited to join. So there is the gender asymmetry and that stuff- and I suppose, I can imagine circumstances where perhaps I would quite like, would like to be part of some sort of support network. In fact I don’t. But I could imagine if I had’ve wanted to be, then I might have felt a bit sidelined, when I found out that all this activity was going on. 
Tim was already part of a very supportive men’s group before he was diagnosed with breast cancer. He commented on how unusual it was for men to be open up their deepest worries and tell each other anything, and that generally men were not as good at doing this as women.
 

Tim had been part of a very supportive men’s group. Within the group he had been able to let out...

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Age at interview: 73
Sex: Male
Age at diagnosis: 60
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Another aspect, which I got involved with also is through my daughter was meeting a woman who, I would describe as a spiritual psychotherapist in a way. And she had formed various groups, she gave various teachings, and she had a group called Wise Women, and women- my daughter belonged to that, and the women gather and get- discuss all sorts of things, and began to trust each other enormously, and it becomes in a sense a support group. And this woman was just in the process of forming a man’s group for the first time, so I joined that. This is back in ‘96, and we worked with her for quite a few years, and then she decided she wanted to go in a slightly different direction, so we had to choose, should we disband, or shall we carry on, on our own? And we’ve carried on, on our own, so there are about eight of us, eight or nine, and we meet once a month, we do a certain ritual together, but mainly it’s for support and help and it’s most, most unusual group, it’s very powerful, we trust each other enormously. So we can tell each other anything, and that’s rather rare for men. We can open up our deepest worries, we can explore with each other, and we’re very supportive, so people- quite different sort of people, so that you get views from different angles about things, and I’ve noticed that all of us, over these years have grown in stature, in sort of confidence, you know in feeling comfortable in yourself. It’s been very, very exciting and very powerful thing to belong to. So that was yet another aspect I would say.
 
When we meet, we always drum to start with, we have drums and we do drumming for about five minutes and it’s [the musician] who usually leads us. We get into it, you know. So we arrive and we get into it, and we sort of try and cast away a bit, life, day, the worries and so on and get together. And we go through various things of that nature to get us together. We usually share a bit of information about what’s going on, and quite often something in that discussion or chat comes up and we fix on it and say “Ah! Do you need some help there should we discuss it more?” We do hands on healing so if somebody’s who’s having a rough patch we’ll give them hands on healing, which I’ve encouraged. Not many of them are reiki people but most of them are interested in that. They’re very, I mean two of them are Shamani people and they’re very into all that thing, you know I’m probably the most amateur of them all in that way.
 
But these other people, all are still working, most of them are. And they really have to make an effort after a hard day’s work, to get to somebody’s house, to have the session, and they want to. It’s a commitment which I think reflects the fact that every one of us in one way or another has been helped by the group. We had- we once had an away weekend, we all went to Wales and we were there for, two nights. We borrowed the house of somebody’s sister who is herself in this sort of, type of thing and has gatherings and so on. And we had an extraordinary time there, which I think cemented the relationships between us. I think each one of us, at that time, had a major experience of you know, releasing something. And funnily enough we were talking about death. I remember that my experience there was that I was feeling pretty unhappy. I let all that out. And we talked about it a great deal, and out of that came this message, live in the now [laughs]. And we drummed it and we did everything. I mean it all sounds a bit funny talking about this but, it really works, it somehow works and when you’re really in it, you can have an impact on yourself. No doubt about it. 

 

In the past Tim, like a small number of the other men, had volunteered to be part of a fashion show organised to raise awareness about breast cancer by Breast Cancer Care. This has given another opportunity to meet other people with breast cancer. HGV King had taken a video of the fashion show to show to the women in his support group later. He had felt very comfortable with both sets of women and able to talk and express emotions freely with them.
 

HGV King enjoyed the ‘banter’ he could have with the female breast cancer patients he knew. He...

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Age at interview: 51
Sex: Male
Age at diagnosis: 50
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 The nurse I’ve got, she is fantastic and I still see her now. Actually, I’m going tomorrow, so… she’s got a little group which she’s set up herself. She’s a Macmillan nurse and she raises a lot for the breast cancer charity but she’s got her own little set group which she started for young women with breast cancer, and she’s asked them if they would like me to go, and I’ve been invited along each month to go and sit down and discuss things with them. So I took the [Breast Cancer Care] fashion show DVD in for them and they were very impressed with that. They liked that.

 
Do you feel well supported with them? Do you feel you’re included in the group when you go?
 
Yeah, yeah. It’s funny because like I said, there’s a reunion. When I went in January, went to a reunion with six other ladies from the show that I was in and they laugh and joke with me because they like my sense of humour, so they always… they come round and say that I’m one of the girls. They treat me as one of the girls, which is nice. I know… it’s nice where women can give you that banter and if… obviously you need a man that can take it. That doesn’t bother me. I like all the banter off the ladies. Actually, I have a better conversation with them than I do with the general Joe Public, but I’d like… I can sit down in a café and talk about this breast cancer for ages. It’s just something I like to do, but no it’s… it’s a, how can I put it? Where the women are concerned, I always look at it as their disease but and I like it, it’s like supporting them as well even though I know I’m getting that support off of them, I don’t look at it that way. I look at it… there’s one lady, she’s got breast cancer and secondaries now. She’s going through bone cancer as well. She turns up and everyone… we all look up to her, praise her so much and yet, she… when she starts talking about her issues, we’re all sitting in that room tears coming down our eyes. Emotionally breast cancer I think is just one of those types of diseases where it does, it seems to hit you here in your heart. I’ve changed me, in quite a few different ways. I feel I can give people more time and I’m a lot more considerate and kind … don’t know why, but it just seems as though this has affected me in that way.
None of the men had been part of a group with other men with breast cancer, but a few men had been put in touch with another man with breast cancer and they had found it helpful to meet and have this one to one support. Because BT had found this helpful, he had offered to do the same for other men.
 

Eric had felt alone with no one to go to. He found it very worthwhile to meet and talk to another...

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Age at interview: 78
Sex: Male
Age at diagnosis: 70
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 But I say, the thing that did annoy me was feeling alone. I mean, 40-odd thousand women, they’ve got support groups. Who do I go to? Nobody. You sit and ponder yourself.

 
Were you offered any support groups or networks?
 
Well, only this one man who’d been in touch with me, or I presume that’s the only other man in [area], I don’t know.
 
But you had asked to meet someone else, no-one offered you the chance?
 
Well, I knew they say this man in [city], and this was quite a long time after. But… it was, it was very worthwhile, going to [town] and having a couple of pints and having a word with him. It was very, very worthwhile.
 
What sort of things did you want to know? Did you just want to share your experience or…?
 
Share me experience and how you felt and how long it’d be before you felt reasonable again. He’d been… I think he said it was three or four years since he’d had his mastectomy, and he said “oh, I’m just about getting over it now”. I thought three years to go. But I still go to the hospital.
Other men described how their own experiences had helped them to offer support to other people, and a lot of men said they wanted to do this. Roy had talked to other men who had developed other forms of cancer, and some men had supported women who had been diagnosed with breast cancer.
 

Michael had been able to offer a female colleague support without embarrassment when she...

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Age at interview: 67
Sex: Male
Age at diagnosis: 57
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And did you consider going to any kind of cancer support group or has anything been offered?

 
Well, they did actually send me an invitation to one, but going by the actual… the seminar that I sort of gave them a little story to in 2005, it would have been all ladies who probably… I don’t think it bothered me too much but it was really… there was an awful lot on the agenda about sort of constructive surgery and special brassieres and things and I think they may be felt inhibited and I didn’t know I had anything to offer. I said, were there any other men going and they said “no”. So, but one strange thing that came out of it was that I was able to… there was another lady who worked in our department developed breast cancer probably about eighteen months after I’d been through it, and she knew I’d been through it, and I was able to offer her a certain amount of support without embarrassment which I think she found quite helpful because if it’s somebody you know, it’s always a lot easier and you’re more inclined to believe them, I think.
Only a couple of men talked about seeking out support through online sources, such as website forums. A few men said that it would have been really helpful if they could have looked at a website dedicated to breast cancer in men.

Last reviewed June 2017.
Last updated October 2013.
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