Supporting men with breast cancer in the Online Community

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In our October 2021 Community News blog for breast cancer awareness month we linked to some Macmillan information on male breast cancer with the hope it could help people find that information when they need it.

A breast cancer diagnosis in men is rare, so it can feel particularly isolating when going through diagnosis, treatment and beyond. Recently, a new member of the Community posted in our breast cancer group, looking for other men going through similar experiences.

In this blog, we will be highlighting the conversation that followed with the intention of helping others find the group and join in.  There is lots of support offered to everyone in the breast cancer support groups across our Online Community.

Hi, I have recently joined this female dominated cancer world  I have had mastectomy followed by lymph node clearance joined optima trial so skipped chemo and went onto radiotherapy for 5 days and tamoxifen daily…This is a really hard cancer if you happen to be a gentleman sat in waiting rooms listening to woman talking about their treatments” - Community member, breast cancer forum

This member reached out to our breast cancer community and was a little unsure about the reaction he would receive. There was no need to worry as members of the group responded to welcome and encourage this new member to join in. 

"Hi, welcome to the Forum and sorry to hear about your breast cancer.  Appreciate that its very difficult for men with breast cancer and you will probably feel like the only one, but you are welcome here - this is a forum for people with breast cancer." - Community member, breast cancer forum

As this member explained, the breast cancer groups on the Online Community are for anyone with a breast cancer diagnosis. You can also join this support community if your family member or friend has a breast cancer diagnosis.

Members of the group are really welcoming to everyone who wants to share their experience, ask questions and find peer support.

"Breast cancer in men is a bit of an orphan indeed, but I am glad someone finally shows up and starts talking about it. I hope that if there are other men out there reading the forum who have breast cancer, they will now post." - Community member, breast cancer forum

Other members of the breast cancer group have seen for themselves just how isolating it can be for men with this diagnosis. It can affect your well-being and mental health when healthcare professionals make assumptions about why you're attending a clinic.

"Hi and welcome.  I hear you. I have often thought of a man who walked into the clinic just behind me once and was told that he'd have to wait outside as partners weren't allowed.  I had to explain he wasn't with me and he had to explain he had an appointment of his own. Not great." - Community member, breast cancer forum

Members of the breast cancer group have seen for themselves how isolating it can be for men with this diagnosis. It can affect your well-being when healthcare professionals make assumptions about why you’re attending a clinic.  

In addition to emotional support, you can share tips to help improve your quality of life. For example how to cope with side effects of breast cancer treatments such as surgery, chemotherapy and radiotherapy. 

"Stay with us and participate as much or as little as you like; with your experience of surgery and radiotherapy I am sure you will be able to answer a lot of questions and concerns exactly as others here, but with the benefit of a fresh perspective that the forum does not get to experience normally." - Community member, breast cancer forum

"Glad you found us and hope you find the support you need.  We have had other men join who've been diagnosed with BC but they haven't hung around after treatment ends which is a shame as I'm guessing you would find it useful to connect with them." - Community member, breast cancer forum

If you or your loved one is a man with a breast cancer diagnosis, this online support group and cancer community is here for you. Community member 'BWBCancer' is keen to connect with and share peer support with other men:

"If I can answer one bloke and point him in the right direction or give an answer fine .i will hopefully keep logging in on here so if your a bloke looking for breast cancer in men, please post and i will get back to you. Thank you for replying" - Community member, breast cancer forum

Member BWBCancer did not have to wait for long before other Community members came along to share similar diagnosis and experience.

"Hi. Another user sent me a link to your post. I have recently diagnosed with male breast cancer and know it is rare and was hoping to contact other men in the same situation." - Community member, breast cancer forum

"I'm a man and felt tiny lump directly underneath my left nipple whilst taking a bath. Felt my right breast and realised i didn't have same thing there. was size of a pimple so wondered whether it was worth mentioning to doctor. glad i did." - Community member, breast cancer forum

Why not join in with the conversation here? Anyone is welcome to reply and offer their support or introduce themselves to the friendly and supportive group. 

In addition to the main breast cancer group, which is intended for anyone with a primary breast cancer, the Community also has the following groups. Not everyone’s breast cancer experience is the same which is why there’s different forums available for you to join:

You find all Macmillan's breast cancer information here and our pages specific to breast cancer in men here.

You can find Macmillan's booklet 'Understanding breast cancer in men' to download or order in paper format here.

Other charities also have some good resources, for example, you can find Breast Cancer Now's pages on breast cancer in men here.

I hope you've found this information helpful, we welcome any comments, feedback or questions below. You can also contact the Community team by email at community@macmillan.org.uk 

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