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Men and metastatic breast cancer

There will be hurdles along the way, but never give up hope. – Matthew

Most people feel devastated when they are told they have metastatic breast cancer. For men, this diagnosis can be particularly confronting and may bring with it many different challenges. These may include difficulty finding breast cancer information tailored to your needs, stigma around having what is seen to be a ‘woman’s disease’, and feelings of isolation and being on your own.

This page is written to help you understand you are not alone. We hope you will find information and support to help you.

Getting information

There was just no information. There was nobody really to talk to, and to be honest I felt like I didn’t belong anywhere. That was really hard. - Ross

As a man diagnosed with metastatic breast cancer, you will be looking for information and support that is tailored to your needs. Hope & Hurdles is a tailored resource and, while it has been designed for women and uses language and stories that focus on women’s experiences, much of the information in it is also relevant for men. Men usually have the same breast cancer treatments as women, with similar side effects for example. And the mental anguish of being diagnosed with a life-limiting illness is similar for any person, regardless of gender or disease type.

In Hope & Hurdles, there are optional booklets on the sites of metastases (bone, lungs, liver and brain) and subtypes of breast cancer (hormone-positive, HER2-positive and triple negative) that will also have relevant information for you. Talk to your medical oncologist or breast care nurse about which booklets are appropriate for you if you are not sure.

If you are looking for additional information that is tailored to men, BCNA’s booklet Men get breast cancer too may be helpful. Written for men diagnosed with early breast cancer, it includes some basic information about metastatic breast cancer and information on ways to deal with some of the challenges men may face after a diagnosis. The booklet also lists other resources and counselling services available for men.

Dealing with a diagnosis

In terms of breast cancer, my perception is that it is still perceived as being a female disease, and if a man gets it there’s got to be something wrong. Many men are totally reluctant to tell people about it. – Eric

You probably have a strong sense of disbelief and shock. Men often want to understand why they have developed metastatic breast cancer, especially if they have previously had treatment for early breast cancer. Unfortunately, even the best treatment for early breast cancer does not always remove every diseased cell.

Some men may be diagnosed with metastatic breast cancer from the start. This is called ‘de novo’ breast cancer. Read more about metastatic from the start

Men with breast cancer can sometimes feel very isolated and even stigmatised by their disease. Having breast cancer can change how feel about your body and about who you are – your sense of identity. You may feel embarrassed telling other people about your diagnosis and, sometimes, people may seem to react with discomfort or disbelief when you tell them about it.

Taking the lead and talking openly about your cancer can give the message that you’re comfortable discussing it and that there is absolutely nothing to be ashamed of.

It never bothered me at all that breast cancer was somehow not a ‘masculine thing’. I knew it was uncommon amongst males, but it never bothered me. I shared my story from the beginning. – Ross

Getting support

The family support, the dog, the neighbours and the Dragons Abreast ladies - it was all a significant contribution to my welfare. Support networks are beyond value for cancer survivors. If you haven’t got it, I really think you’re up against it. Nobody has to be alone in the world. – Richard

Men with breast cancer should receive the same level of support they would receive if they had any other type of cancer. But because it’s so uncommon that even health professionals can struggle to understand what support is needed. This is beginning to change, with the increased focus of the needs of men with breast cancer by organisations such as BCNA, but it can be frustrating at times to feel that there’s still not enough support out there. The good news is that there are resources that can help you.

Looking after your wellbeing is easier if you have a strong support network. Friends, partners and family are a crucial part of that support network. However, some men also find that counselling is very helpful.

Counselling

BCNA provides free confidential, professional one-on-one telephone counselling for people affected by metastatic breast cancer and their family members. To make an appointment to speak with an experienced professional oncology counsellor in the privacy of your own home or preferred place, phone BCNA on 1800 500 258 or email beacon@bcna.org.au.

Your GP may be able to refer you to a counsellor, and provide you with a GP mental health care plan, which entitles you to a number of Medicare-subsidised appointments with a psychologist or other mental health care professional.

If you are still working, your employer may provide a small number of free, confidential counselling sessions through an employee assistance program.

In some states and territories, you can access counselling through the Cancer Council Information and Support Line (13 11 20).

Read more information about counselling

You can have lots of resources and information and pamphlets and stories and newsletters, but the most powerful thing for me, to be honest, has been my friendship with other men who have been diagnosed. That has meant the world to me in terms of being able to share things that only we ‘get’! – Ross

Some men find it valuable to connect with others who are living with metastatic breast cancer. Unfortunately, men tell us it is especially hard to find support groups that are tailored to their needs, and that help them to feel included and comfortable. You may like to talk to a member of your treating team to see if they know of other men or suitable support groups you could connect with. A counsellor, social worker or GP may also be able to connect you with local support services. You may also find it helpful to seek support from other, more general cancer groups where members have a range of cancers.

What really made an impression on me with my support group was the way they just listened. I cannot tell you how empowering it was for me. It was like this huge emotional weight had been lifted off my shoulders. It was perfect, it was just what I needed. I went for about four sessions to that support group. And then I felt fine, I didn’t need to go anymore. – John

Some men find it easier to connect through online groups, including overseas websites designed for male breast cancer survivors. It is important to be mindful that these groups are not always professionally facilitated, so some of the posts may not align with your own views. A list of online support groups and male breast cancer resources can be found below.

Treatment

Treatment for metastatic breast cancer aims to stop the cancer from growing or slow its growth as much as possible, and to control pain, discomfort and any other symptoms. Some treatments will treat the cancer and may relieve the symptoms very quickly. Others take longer to work and some may not work at all. If one type of treatment doesn’t work for you, there will usually be others to try.

There have been very significant advances in the treatment of metastatic breast cancer in recent years, due to research providing a better understanding of breast cancer. While research has not been undertaken specifically in men with metastatic breast cancer, men can benefit from new treatments developed.

The treatments recommended for you will be influenced by a range of things, including the pathology or ‘subtype’ of your breast cancer. There are currently three main breast cancer subtypes that guide treatment recommendations:

  • hormone-positive
  • HER2-positive
  • triple negative

Your oncologist will talk with you about the subtype of breast cancer that you have, but most men with breast cancer will have hormone-positive breast cancer. Read more information on treatment

BCNA has developed booklets on each of the three subtypes of breast cancer. You can refer to the one relevant for your breast cancer subtype for specific information about treatments that may be recommended for you. You can order these booklets online or call 1800 500258 and we will send a copy to you.

Further information

Resources for men

Male Breast Cancer: Taking Control

Written by prominent Sydney radiation oncologist Professor John Boyages, this book provides a wealth of information on everything from diagnosis and treatment options for men, to tips on getting access to the right information, and practical and emotional supports. The book has helpful take-home messages at the end of each chapter, and features inspiring stories from men. Visit the above website for more information on how to order the book and other publications in this series.

Not just a woman's disease: Information about breast cancer in men

Look Good … Feel Better for Men

This is a free workshop-based program that teaches men diagnosed with cancer to manage some of the appearance-related side effects of their treatment. It aims is to help improve people’s confidence and body image.

Cancer Council Information and Support Line (phone 13 11 20)

This is a free telephone information and support service run by Cancer Councils in each state and territory. Trained health professionals are available to speak with you about breast cancer. They can also arrange for you to speak with a counsellor.

Breast Cancer in Men – Information booklet (USA)

This comprehensive information booklet from USA-based organisation Living Beyond Breast Cancer provides excellent information on the emotional and support needs of men who are diagnosed with breast cancer, including a focus on gender identity issues, stories from men, and representative images of men who have undergone mastectomies. The final section of the booklet provides a good overview of available resources for men, although it is mostly written with a US focus.

Male Breast Cancer Coalition (United States)

The Male Breast Cancer Coalition (MBCC) is a USA-based not-for-profit advocacy organisation. Its aim is to educate and promote awareness about breast cancer in men, and provide information and support resources. It includes stories of male breast cancer survivors from around the world. It also features plenty of resources for men and their families on topics such as treatment options, male breast self-examination

HIS Breast Cancer Awareness (United States)

This is a USA-based organisation created provide education and raise awareness on the causes, treatment(s), emotional experiences and stigma encountered by men who are living with breast cancer. The organisation also publishes a blog.

MaleBC.org (Australia)

This Australian website is an information and awareness hub, which has been established by an Australian male breast cancer survivor.

Entering a world of pink (United States)

Entering a World of Pink is the personal blog of an American man diagnosed with breast cancer. In the blog, he shares his experiences with his diagnosis, treatment, and the latest research.

You can also access general information and resources on the following websites:

Cancer Australia’s Breast cancer in men website

Cancer Council SA’s Breast cancer in men webpage

Breast Cancer Care UK’s Men and breast cancer webpage and booklet (UK based)

Cancer Research UK’s Breast cancer in men webpage (UK based)

American Cancer Society’s Breast cancer in men website (USA based)

The Breastcancer.org Male breast cancer webpage (USA based)