‘It's a scary place for a man to go, into a breast cancer clinic’

Dr Kerry Quincey (De Montfort University) set up the 'virtual meet up' (VMU) initiative after her own research found that men with breast cancer did not feel they had the same level of support as women with the condition. The monthly initiative allows men affected by breast cancer to share their experiences. Here, she talks with two of them.

Kerry: I know that speaking with you guys previously, one of the main things we wanted to achieve from the VMU is that it was 'for men by men', and that it wasn't this stuffy academic resource… In my PhD, which looked at men's experiences of breast cancer, there was a strong theme that men wanted a safe space where they can talk and engage with other men in a way that they haven't previously been able to do. That was where it all started. 

I had a chat with Doug [pictured, right], a long time back, about how that might evolve. And then we got involved with the Breast Cancer Coalition; we saw how they were doing things over in the US, a platform for men to do this on a monthly basis. We wondered how we might replicate that in the UK… in terms of men like yourself, Doug, who suffer from chronic fatigue as a result of that treatment, trying to manage different time zones on top of that is incredibly problematic. And so working with AnCan, working with Male Breast Cancer Coalition, and also Walk the Walk, between us we've managed to set up this resource, which we hope is the start of something really positive for men in the UK. 

So Doug, you are a founder member alongside me; Dave's joined slightly after that. And from your perspective, what are the intentions of the virtual meetup?

Doug: I can tell you how it felt after one. It was really nice for me to meet other men that have got something in common, even if you don't even talk about that all the time. It's nice to just have other guys that have gone through or are going through what I have. The first time I met another bloke with breast cancer I was really emotional… we weren't even talking about it, it's just knowing that somebody has suffered like you have. 

As a group, if we can say to people, like certain charities, 'hey, men get breast cancer too, can you put it on your front page? Can you have a man in your advert once every five years?' People think that we're against women, but obviously not… I've supported loads of women in cancer care, we've all stuck together and helped each other in any ways we can. But meeting other guys is brilliant. I don't think we've got enough Daves though…

Dave [pictured, left]: Yeah, I'm the best looking one, though!

I think you're absolutely right. What I think will come out of this group is that people are going to exchange experiences and ideas, something which outside of the group is actually really difficult to do. I mentioned at the last meeting, I have a bee in my bonnet about Tamoxifen. And I was astonished by the number of people who said, 'it's that bloody Tamoxifen'. I thought it was just me. I had met one other person who had a similar experience, but there is an absolute thread there.

I saw my oncologist last week, and I mentioned that we were doing this, and I mentioned Tamoxifen, because I've got severe problems with cramps at the moment. And he said, 'I'm your oncologist, but I can't actually give you any solid empirical evidence as to what this thing does'. So if we've got 30 people here, by definition, they've probably got 30 different oncologists, if we all go and talk to those people and we all say, hang on a minute, we need to know more about this. And we need the scientific community to stop saying 'we assume it's going to be the right thing for you guys, because it's the right thing for women'. This needs to stop, this assumption that the treatment is exactly the same.

Doug: That's key, it's about whether you know anyone else. I've always been told that treatment is different for everyone, but the amount of men suffering with Tamoxifen…

Then there's the wait for treatment. Some people might get taken to the hospital for tests straightaway; other chaps in the group had to wait a long time, six months or so, or were told 'you've just got a cyst'. So the group allows us to say 'we're a group of this many men, this is something we found out'. It's not too fancy. 

Dave: I also think it's an opportunity for us to exchange information. There's the nature of cancer is there is research going on in all different sorts of directions. So if I go to my breast cancer surgeon, my oncologist, he says, 'we're gonna put you on a trial', then I can come back to this group and say 'you guys, I just started this trial, these are my circumstances. And if there's one other person in that 30 who says 'hang on a minute, that might be applicable to me', and goes and speaks to their oncologist…

I've talked about the very factual things. The other thing for me is that I first met another man with breast cancer four or five years ago. Everybody I've met, it's been through the charity Walk the Walk. We meet, and then we don't see each other for a year or 18 months. The big difference with this group, is that it is a rolling, regular exchange. So last week, I was in the pits, no logical explanation for it. And, just to open up to people who will understand the fact that you have highs and you have lows, that is going to be absolutely invaluable.

Kerry: So that's what I was going to ask you, in terms of psychological wellbeing, from your perspective as two men who have lived through this experience and are still living with the repercussions of it now, what will this add for you? How will it benefit your lives through having the virtual meetup?

Dave: I feel every challenge. I'm talking about emotional challenge. It's akin to Alcoholics Anonymous. Why do you bring alcoholics together? It's not because they are going to get cured. It's because they are people going through an experience, and they are the only ones who can truly understand the challenges, the emotions, the difficulties of being an alcoholic. We are exactly the same. We're bringing together a group of people. I don't know your background Kerry. But even if you are a former breast cancer sufferer, you couldn't understand it from a male perspective. 

Kerry: Absolutely. 

Dave: And that is what is for me absolutely critical.

Kerry: I think that's what makes it really beneficial, my position, in a lot of ways, because I am not a man and I'm not a woman that has ever had breast cancer. So I feel I come into this fairly neutral, or I hope that it comes across that way. And I have my professional hat on, I have my researcher hat on, but listening to men's stories, listening to men's journeys through their breast cancer experiences, what I noticed at the very first virtual meetup was that it didn't seem to matter how recently or how distant men were diagnosed, there hasn't really been that much progression. Whether they were diagnosed 15 years ago, or whether they were diagnosed five years ago or whether they were recently diagnosed or re-diagnosed again. 

So in terms of thinking about changes that the VMU might engender, from your perspective, what has changed? And what do you think needs to change going forward? If we're using this as a platform for good and going forward for men?

Dave: I think, awareness wise, we are on the right track. I think there is a very strong message going out to various sources, to various charities. And we're all becoming missionaries in this group, we're going out there and we're saying to people, 'men get breast cancer'. 

I think the soapbox we need to climb on to say to the scientists, to the medical profession, the nursing profession, 'guys, you need to be sensitive to the fact you've got a new population out there who need handling for what they are. It shouldn't be 'this is unusual, it's a man with breast cancer', it should be 'this is an individual with breast cancer, what do we need to do to facilitate that?' Yet it is still the case that if you walk into a breast cancer clinic it's pink. I get the point that it's a female environment. But there has to be more awareness that it's a scary place for a man to go, into a breast cancer clinic. It really is. You feel so self-conscious. 

Now, clearly they can't set up special clinics for us. But perhaps, they need to kind of consider maybe not maybe asking men to go into full blown breast cancer care clinics, maybe having a separate waiting area, or separate sessions for us, which don't run within a breast cancer clinic. It's all about making us feel that we're not an anomaly.

Doug: Just echoing what Dave said earlier, the fact that we're sort of shrugged off. 'We don't really know', 'that's what you've got', 'we'lll try this'. My wife's always said, we're all guinea pigs with it. 

At my hospital, they were doing mammograms and there was little cubby hole. It said 'women only', in this bit. I was sitting there with this young lad, only 20 years old. He was shit scared, seeing if he had breast cancer. And this woman come out and said, 'men, you've got to move'. Because the women weren't fully dressed, but it's not as if they had the gowns on… I complained, but then the next year the same thing happened again. They said 'you've got to go to reception', which is miles away, and when they call your name you can't hear it. It dehumanises us. So the last time I actually took a picture of the notice and put it on Twitter. They've apparently taken it down now, or they say they have.

Dave: I'm actually saying we should be catered for separately, but in a constructive and supportive way. So if they say to you,' look, Doug, we've actually got a separate space for you here, because we feel that men need to have a male space for this', you'd say, 'hey, that's great'. If that happens the other way round to women, we get absolutely slaughtered for it. I suppose you could say we're getting a taste of our own medicine… but you know, it doesn't take much to get it right.  

Kerry: You must mention that at the next meeting.

Thinking about dedicated spaces, the virtual meetup is for men by men. What is the difference from your perspective of having a dedicated space rather than say, going along to a support group that is for all patients or one that you perceive to be more female dominated?

Dave: One word: safety. I feel safe in that group. 

Take Tamoxifen again. One thing I've learned it that it is common for it to destroy your libido. That for men is potentially catastrophic, in a psychological sense. You start taking this tablet and it's like a switch. It's like a chemical castration. There's no warning about it, there's no support for it, you feel alone, you feel embarrassed, you don't know how to handle your partner. I'm very lucky, but if you're not in a strong relationship, it can be a real problem. That sort of conversation you can only have amongst a group of people where you feel safe, people of like mind who understand and don't mock.

Doug: If you're in a group of men and women, you can have different issues and it becomes harder to focus on what feels like our issue.

Kerry: That's the interesting thing, isn't it? Breast cancer itself, it's not a gendered illness, but the impact of it in a body of a man versus a body of a woman, as you've both quite rightly said, it's a very different experience. Hopefully the VMU to everybody feels like a safe zone, a safe space where they can interact and engage with men like yourselves who are going through similar – perhaps not the same but similar – experiences, that they can appreciate.

So how do you see this going forward? What would you like me to do, now that it's launched?

Dave: There are two levels. Firstly, as a group, if we have a concern or a question, you pick up on it and say 'OK, let me take that away, and see if I can find an expert'. And at the other level, it is just that ability to say to people, 'this is who I am, this is what I'm going through, this is what I went through, this is how I felt', just, you know, opening up to people.

Doug: Diversity, really, around people, and the way they're treated differently. To know what other people have been treated with, what side effects they have suffered, what other men have suffered through… that is invaluable.

Dave: There is one other thing… what does the 'U' stand for? 

Kerry: It's just Virtual Meet Up. That's all it is. 

Dave: Ah! I got 'virtual meeting', and I'm thinking 'U? U?'

Kerry: Obviously, being a psychologist at DMU, it fits quite nicely, marketing are quite happy with that one! 

But I'm delighted to be taking what is essentially PhD research… you have these goals and ambitions, for the research to go somewhere, into action, to do something. I feel like this is doing something. Listening to you guys and your perspective and how you see this going forward, it makes me confident that it wasn't a pipe dream, it's a needed resource. And not a one-off event, but actually having monthly contact and something that will hopefully continue.

- Dr Kerry Quincey CPsychol, FHEA is Senior Lecturer in Psychology at De Montfort University

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Read more about the group here.