Advocating for Male Breast Cancer Patients
Being a patient advocate is satisfying, and advocating for men unfortunate enough to be diagnosed with breast cancer provides a real service for a cohort who often don’t even realize they could get the disease. After a diagnosis seven years ago, when I had so much trouble finding information and support, I decided to become a patient advocate for men.
Male breast cancer
I cut my teeth as a regular poster on BreastCancer.org which was one of the few communities that welcomed men. With a marketing and IT background, I soon realized I could get a credible message out there if I learned enough to be authoritative and therefore confident to spread the word.
I was fortunate enough to attract the attention of local breast cancer charities which were only waking up to their neglect of men over the years. All the pink razzle-dazzle really just enforced breast cancer as a gendered disease and blindsided men when they were wondering what lumps were behind their nipples. So many of us are told, it’s only a cyst.
So, I was trained as a telephone counselor and volunteered at the local infusion center. After attending conferences for patient advocates, I was fortunate to land a spot in the NBCC Project LEAD course in San Diego in 2018. In 2019, I received a scholarship to attend SABCS19, where I was impressed by the kindness of most women who are patient advocates in this field, and who I only knew online.
Why so few men come out with this disease is a good question. Anecdotal evidence suggests that men are generally reluctant when it comes to facing up to medical issues. Then, I know there’s the stigma attached to having what is perceived to be a female disease. When I was diagnosed with prostate cancer a few years ago, I added another string to my bow.
Multi media for patient advocates
While the traditional print and electronic media are still effective outlets, social media is the perfect platform for international patient advocates to engage with patients and medical professionals. It’s very easy on Twitter to reach out to the clinical and research communities around the world to spread your message.
One thing leads to another. Now I’m writing articles making videos, giving talks, and editing the stories from men for the Male Breast Cancer Coalition. I occupy a niche in breast cancer advocacy, and I’m always amazed at the number of medical professionals following me on Twitter.
What it takes
Patient advocates need to look at and respond constructively to different positions and issues, bounce back from negative or unresponsive patients, and, most importantly, be resilient enough to handle the trials and tribulations of our disease along with that of the people they are trying to help.
The best patient advocates:
- always listen and learn;
- are open to different ways to share messages;
- value support from others;
- and partner with like-minded individuals.
Basically, I believe patient advocates have much to gain psychologically from helping others. That aside, if we’ve benefited from the help of others, why not pay it forward?
Have you gained new friends in your metastatic cancer journey?