UK Virtual Meet–up (VMU) for men diagnosed with breast cancer

Although Walk the Walk organise a physical yearly reunion it was recognised that some of the men would welcome the opportunity to be able to chat more often about their experiences with other men who have been diagnosed with the disease.

“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.” - Doug Harper

Looking back to 2017 it now seems like a strange quirk of fate that Walk the Walk was introduced to six wonderful men who had each experienced breast cancer. During their treatment, most of the men had never met another man in the same situation, so the charity organised an opportunity for the men to meet each other. This meeting was to become the first time in the UK that a group of men, all having had breast cancer, were able to meet and share their experience with another man. As a result, this generated a huge amount of media interest and was the beginning of not only the Men Get Breast Cancer Too awareness campaign, but the beginning of a tale that would lead to the creation of a UK Virtual Meet-up and a very positive change for all men diagnosed with breast cancer.

In the UK, breast cancer in men is rare, affecting between 370-400 men a year. However, mortality is high, with over 80 men dying each year, mainly due to lack of awareness that they can get this type of cancer, and by not doing regular checks, which often results in a late diagnosis.

The campaign has gone from strength to strength with many exciting developments over the past three years. The number of men now bravely sharing their experience has grown to twenty-one, ten charities have joined the collaboration with Walk the Walk, and all are uniting to speak with one voice to spread the word. There have been radio and television interviews, articles in national and local press and a Check your Chest poster that has been circulated far and wide to raise awareness that men actually can get breast cancer, how they can do regular checks and spot early signs.

Because men are treated for breast cancer in the same facilities as women, most of them had not come across any other men with breast cancer, which only adds to the isolation that one can feel whilst undergoing treatment for the disease. Whilst Walk the Walk organise an annual reunion which is always welcomed with great enthusiasm, it became evident that it would be a really positive step to give the men a platform where they could regularly meet, chat and share their stories and experiences.

Once again as luck would have it, Walk the Walk had developed a partnership with the Male Breast Cancer Coalition in the U.S who were hoping to initiate a ‘Virtual Meet-up’ for men in the UK, similar to the forums that they operate in America. 

Dr Kerry Quincey, a Senior Lecturer in Psychology at De Montfort University, Leicester, had looked at men’s experiences of breast cancer in her PhD. She found that there was a strong theme that men wanted a safe space where they could talk and engage with other men in a way they previously had not been able to, and began speaking to The Male Breast Cancer Coalition.  Kerry had also kept in touch with Doug Harper, who had been involved in her research and they hoped that together they would be able to start a virtual UK group for men.

So this very unique tale is the end of the beginning, but the beginning of the next exciting stage. It has brought together the Male Breast Cancer Coalition, Dr Kerry Quincey, Doug Harper and Walk the Walk, and the first UK Virtual Meet–up (VMU) for men diagnosed with breast cancer was launched on Thursday 22nd October 2020. It was a great success and 16 men took part. The future for men with breast cancer is already looking brighter and more positive.

Dr Quincey, who attended the meeting, said;

“Listening to the men's stories, listening to the men's journeys through their breast cancer experiences, what I noticed was that it didn't seem to matter how recently or how distant men were diagnosed, there hasn't really been that much progression for men. Whether they were diagnosed 15 years ago, five years ago, or whether they were recently diagnosed or re-diagnosed. 

Hopefully the Virtual Meet-up will feel like a safe zone, a safe space where the men can interact and engage with others like themselves who are going through similar – perhaps not the same, but similar – experiences. The VMU is a dedicated space run for men by men with a history of breast cancer, it is very different from a support group that is intended for all patients, one that is female dominated, or led by charity personnel or a health professional."

Doug Harper, the lead moderator, talks about what the meetings mean to him;

“I can tell you how it felt after only one meeting. It was really nice for me to meet other men that have got something in common, even if you don't 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. 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. 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.

Issues can be addressed and shared, there’s the wait for diagnosis and 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’.

At my hospital, they were doing mammograms and there was a little cubby hole. It said ‘women only’, in this bit. I was sitting there with this young lad, only 20 years old. He was 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.

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 Talbot is one of the founder members of Walk the Walk’s Men Get Breast Cancer Too campaign and is a moderator at the VMU. He said;

“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 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 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. I also think it's an opportunity for us to exchange information. So if I go to my breast cancer surgeon or my oncologist, they say, ‘we're going to 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. It’s great when we meet, but 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. One word: safety. I feel safe in that group."

The UK Virtual Meet-up is held on the fourth Thursday of each month at 8pm. For details contact [email protected]

If you are a man or know of a man who has been diagnosed with breast cancer and would like to find more about Walk the Walk’s Men Get Breast Cancer Too awareness campaign contact [email protected]

 

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