Raising awareness of the experiences of men with breast cancer

This year it is projected that of the 20,030 people who will be diagnosed with breast cancer, 164 will be men.

Even though breast cancer in men is relatively rare, it is important for men to know that they can develop it, which is why we mark Men’s Breast Cancer Awareness Day on 20 October, as part of Breast Cancer Awareness Month throughout October.

Herb Wagner and Pieter Nienaber have both had breast cancer and have chosen to share their stories to encourage greater understanding of the experiences of men diagnosed with breast cancer.

Herb’s story

Sixteen years ago, I was diagnosed with stage 2 to 3, oestrogen positive invasive ductal carcinoma. I had a modified radical mastectomy and five lymph nodes removed, followed by five years on Arimidex.

In 2006, I started to speak out about my experience of male breast cancer. Three years later, I launched a website to promote awareness, and established A Man’s Pink, a male breast cancer advocacy organisation in the USA and Canada.

Since then, I have helped raise awareness of male breast cancer by working with other organisations and experts, including Professor John Boyages, an Australian Radiation Oncologist and male breast cancer advocate. I learnt of BCNA’s support and advocacy work for male breast cancer at the 2016 Clinical Oncology Society of Australia annual conference and, in 2017, BCNA and I worked together to establish 20 October as Male Breast Cancer Awareness Day in Australia. I detail my 15-year journey with male breast cancer in my book, A Man’s Acceptance into the Breast Cancer Sisterhood. This is free to download from my website, where you can also find out more about me and male breast cancer.

The biggest challenge for a man after receiving a breast cancer diagnosis is overcoming the feeling that you have done something wrong, that you are abnormal and that you will die from what you believe to be a woman’s disease. Treatment protocols are improving, and survival rates are increasing for men diagnosed with breast cancer. You must be positive and eliminate the male macho image that you can handle this alone, as you cannot. Your loved ones and friends will play a significant role in your recovery, so let them help you. Try to learn as much as you can about breast cancer so you can develop a good working relationship with your medical team.

Male breast cancer information and advocacy have come a long way in the last 15 years, especially in Australia.  However, globally there needs to be more educational and financial input as well as co-operation among the major breast cancer organisations, university and private research organizations as well as pharmaceutical companies to increase male breast cancer awareness, advocacy and inclusion in clinical trials.

Pieter’s story

In 2017, I lost my wife to breast cancer. Then, in April this year, I was diagnosed at the age of 67 with triple-positive grade 3 breast cancer, which has spread to my sentinel lymph node.

I underwent a mastectomy and axillary node clearance in May and started four rounds of chemotherapy in June. I received special permission to have the Pfizer COVID-19 vaccine before my third round of chemotherapy.

I had just started a new job in March and thought I would have to resign due to my diagnosis. Instead, I was relieved to find my employer was incredibly supportive, which took a huge weight off my shoulders.

I think the immediate side-effects of chemo including severe headaches, nausea, diarrhoea, constipation, fatigue and nail loss, are some of the biggest challenges. I now have lymphedema in my left arm as a side-effect of the axillary node clearance. The long-term side-effects may also be a challenge and I hope to make the best recovery possible as I wish to once again live a more active life than right now.

BCNA has been my most helpful resource since I was diagnosed. Thanks to BCNA, I also met Professor John Boyages via an online virtual discussion and received a copy of his book, Male Breast Cancer: Taking Control, which has also helped me on my journey.

 

Issue 89
Spring 2021