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Q&A with the Male Breast Cancer Coalition

What is the biggest struggle for men battling breast cancer and how does your organization help them through this?

Many of our Male Breast Cancer Coalition (MBCC) brothers tell us the biggest struggle for them is getting past the stigma of having BREAST cancer. The words are sometimes hard to say. Sometimes people think we’re joking when we tell them we have breast cancer.

Another big struggle for men battling breast cancer is most don’t even know they can get breast cancer. There is a lack of professional awareness and support due to uninformed care providers. Many doctors don’t even recognize men can get breast cancer and don’t routinely check our breasts during physicals. If the doctors don’t realize a man can get breast cancer, why would we?

And how about the frontline at the doctors’ offices or radiologists? So many times we hear one of our guys tell us how when they are called in for an exam, they may be called by a woman’s name or the person doesn’t believe the man is the patient and not a caregiver.

Others will tell us the biggest struggle is the isolation they feel as men when they go for check-ups and treatment, since they are usually the only men in the waiting room with breast cancer. Everything at a diagnostic facility is geared towards women. The paperwork only has questions for women (last menstrual cycle, breastfeeding, etc). Everything is pink. From the gowns, to the pictures, to the ribbons that surround us. Even some of the renowned breast cancer organizations give little attention to or acknowledge breast cancer is not just a woman’s disease.

 

For men like Bill Rotter who have the BRCA gene, what impact does this have on them and their family? How does your organization suggest they handle this?

Some men are not aware there is such a thing as genetic testing. Their doctors may not suggest testing. Some of our men have said, “Why do I need to be tested, I already have breast cancer?” We explain the importance of genetic testing because of the other possible increased cancer risks and the impact a mutation could have on the rest of the family. Again, this is about awareness. The patients AND doctors must be aware. People must know children and siblings of someone with a BRCA mutation have a 50% chance of inheriting the faulty gene. That’s 50/50.

Knowing if we are BRCA positive gives us more information when making decisions about the type of surgery to have, just like for women. As a result, some of our MBCC brothers have opted for double mastectomies. When our men learn they are BRCA positive, they are able to alert their families and some of our men have told us they believe their breast cancer and BRCA diagnosis saved other family member’s lives.

 

How is the journey from diagnosis to treatment to survivorship different for men than women?

The journey for many men with breast cancer is one of being a minority and treated as such. From trying to get drugs traditionally prescribed to women or having diagnostic tests and even mastectomies, sometimes we have to battle the insurance companies and explain WE are the ones with breast cancer.

The treatment plans for men with breast cancer are the same as women. We have mammograms. We have mastectomies. We take Tamoxifen and can get hot flashes too. Everything is pink, but we are not the same and sometimes our men feel emasculated. Any cancer patient feels frightened and shaken by the diagnosis, but women with breast cancer can expect support and encouragement from friends and family while many male breast cancer patients are greeted with disbelief and curiosity.

 

What if anything is your organization doing to lobby for more male breast cancer research, awareness or funding?

Not only do men get breast cancer, but they get metastatic breast cancer too. This is why we are advocacy partners with The MBC Project and MBC Alliance.  The Male Breast Cancer Coalition and HeritX have teamed up to educate and raise money to prevent inherited BRCA cancers. We know breast cancer doesn’t discriminate and BRCA mutations don’t discriminate either. With a 50/50 chance of inheriting a faulty BRCA gene from mothers OR fathers, experts recommend all men diagnosed with breast cancer have genetic testing. We know firsthand men pass on the mutations to sons and daughters and HeritX aims to change the fate of children who inherit cancer-causing genes. The majority of cancer research dollars are spent on treatment and cures, which is very important, but what we all want is to not get cancer in the first place.

 

What is the male breast cancer coalition doing to help men who have breast cancer feel less alienated? 

Some of our members have never met another male breast cancer survivor in person. We want men to know they may be walking down a lot of pink hallways, but they have plenty of men behind them supporting them and guiding them to the blue light in front of them.

The Male Breast Cancer Coalition has been the leading force behind getting the 3rd week of October designated as Male Breast Cancer Awareness Week around the country. In a month dedicated to raising breast cancer awareness, we should be talking about ALL breast cancer. We’re just looking for a little blue in Pinktober. In some states, the 3rd week is law, but in most states we have to go back each year to apply for the recognition.