By Rod Ritchie
Most cancers are genderless, with the notable exceptions of ovarian, cervical, testicular, and prostate cancers. Why is it, then, that breast cancer is so often thought to be exclusively female, when we all have some amount of breast tissue? With only one percent of new cases in males and other genders, there are often too few of this cohort to enroll in trials, and therefore, we don’t get new drugs tested on us at all. It’s as if we are statistically irrelevant. All this leads to treatment for all other genders based on women's treatment. While this treatment is often very successful, and thankful we should be for the research that created new medications, further research could eliminate a gap in treatment outcomes that was discovered in a recent study.
Because awareness among the general population, including clinicians, that breast cancer is specific to women, studies are a start and prove that quality research can inform treatment for the better. A 2018 study of 1482 men by BCRF researcher Dr. Fatima Cardoso, Coordinator, European School of Oncology Breast Cancer Program, shows men are often under-treated with breast cancer. Also, they were much less likely to get breast-conserving surgery after an early-stage diagnosis. They were also less likely to receive endocrine therapy for ER-positive breast cancer, compared to women. Along with her colleagues, Dr. Cardoso has also reported the biological and molecular differences between male and female breast cancers.
In recent good news, the FDA has issued a draft guidance document, Male Breast Cancer: Developing Drugs for Treatment. They are now recommending the inclusion of males in breast cancer clinical trials. The final guidance document will help guide companies undertaking clinical development of drugs to treat breast cancer in male patients. This will lead to real change.
Advocating For All Stages of Breast Cancer
As a Stage III patient advocate working alongside Stage IV advocates for eight years now, I regularly come across the common social media meme: 20-30% of people diagnosed with early-stage breast cancer will be re-diagnosed with MBC. I always think, well, that means a 70-80% chance of no regression. Not bad odds. But, as the years rolled by and I lost male and female friends to the disease, I could see that my odds may have been favorable, but without a cure, and having also been treated for aggressive prostate cancer, my prognosis was not so good.
Patient advocates living with early-stage breast cancer are often advised to stay in their lane, rather than take up the cause for metastatic patients. At least that was true until recently when influential advanced breast cancer patients and groups began to see the issue of advocacy sustainability as a problem moving forward. Sustainability is an awkward term, but here it is applied to describe the attrition of metastatic breast cancer (MBC) patient advocates, who pass because they’ve run out of lines of treatment. The breast cancer advocate community loses fine advocates all the time.
As a second-generation breast cancer patient, one who lost my mother, aged 40, I’m particularly keen to support younger MBC women who have kids. But, I’ve come to know many metastatic patients from an active social media and forum presence, from attending training courses and seminars, and annual conferences like the San Antonio Breast Cancer Symposium. It was metastatic patients who were the patient advocacy movers and shakers. Conversely, while many early-stagers tended to be active whilst undergoing initial treatment, they were more often not so afterward. Pretty soon my breast cancer pals were mostly MBC folks. And what an informed and active lot they were.
We all crave hope, it is the corollary of fear, a natural emotion, and one common to patients of all stages. Whether we like it or not, we are all more or less in this together. As a man with breast cancer, I know this well. Early-stage patients like myself don’t just give practical and moral support; we learn about what might well be our future from MBC folks. But, regardless, we will have the experiences and memories, the advocacy methodology, and the inspiration based on personal relationships to guide us.
Rod Ritchie is a Sydney-born writer, internet publisher, and breast cancer patient activist, living with breast and prostate cancers. Currently he’s NED for both. He’s President, Board of Directors, Male Breast Cancer Global Alliance, has a website at MaleBC.org and you can follow him on Twitter @malefitness
His articles for Health Union can be found here: https://advancedbreastcancer.net/author/traveltext