Barry's Story: Getting the Word Out About Male Breast Cancer
Barry is a member of the Breastcancer.org Community.
Barry Jones of Akron, New York, isn’t afraid to face an audience. He built a 30-year career in front of the classroom as a middle school and high school teacher in Vermont. Today he’s an accomplished violinist who plays with two Buffalo-area orchestras, the Cheektowaga Community Symphony Orchestra and the Amherst Chamber Ensembles. So it’s not surprising that in 2016, when he became one of the roughly 2,600 American men diagnosed with breast cancer each year, he decided he would share his story to help other men. His message? “Breast cancer — it’s not just for women anymore!”
That quote offers a glimpse of the sense of humor that comes across in any conversation with Barry. But his underlying message is serious: Men can and do get breast cancer, and in the absence of routine screenings, they need to pay attention to their bodies.
After his initial treatments, Barry shared his story with two local TV stations, wrote an essay for the Male Breast Cancer Coalition, and was featured on the YMCA Buffalo Niagara website. Along with his wife, Fran, he completed LIVESTRONG at the YMCA, a program that helps cancer survivors get back on their feet through physical activity and emotional support. It helped him not only gain strength after surgery, chemotherapy, and radiation therapy, but also improve his type 2 diabetes through diet and exercise.
In fact, that YMCA was where Barry first noticed the symptom that led to his diagnosis: a lump in his right breast that rubbed against the noodle he’d use to float in the pool after swimming laps. For months, he assumed it was just a fatty deposit, but over time the lump grew painful. After visiting his family doctor, he was sent for a mammogram followed by a biopsy that delivered the diagnosis: invasive ductal breast cancer, stage II, grade 2. After two surgeries at Roswell Park Cancer Institute — the first to remove the breast, the second to remove the underarm lymph nodes — Barry went through months of chemotherapy and radiation therapy. Given his love of playing the violin, he worked with his team to find a chemotherapy regimen that wouldn’t cause neuropathy in his fingers. Testing revealed that the cancer was hormone-receptor positive, so he knew he would be put on long-term tamoxifen.
One of the first actions Barry took after being diagnosed was to search for other men facing breast cancer. He connected with a 14-year survivor through a local chapter of Susan G. Komen.® He also turned to Breastcancer.org’s Community forum on male breast cancer, where he started messaging with a fellow survivor in Australia. What began as an online connection turned into a real friendship: “We have been Skyping for close to two years, and we make it a pretty regular thing,” Barry says. He soon discovered that his new friend Rod edited patient stories for the Male Breast Cancer Coalition, and Barry decided to publish his.
“It was just an immediate relief of ‘Oh God, I’m not alone, and this is not just happening to me but to other people,’ and that connection has been amazingly helpful, both to me and to him,” Barry says.
That feeling is what inspired him to share his story more widely and raise awareness about male breast cancer. Unlike women, men haven't been conditioned to examine their breasts (yes, they have them!) and think “breast cancer” when they notice a lump. Barry notes that even though one in every 100 breast cancer cases affect men, men often delay seeking help when they notice something unusual. This makes late-stage diagnosis more common: “Men [are more likely to] get it at a more advanced stage, pretty much, and then their lifespan is more limited. And that makes it harder to do long-term studies on it.”
Barry speaks from experience: After initially thinking he was done with breast cancer for good, he faced yet another challenge in fall 2018. As he prepared to go on a 25th anniversary cruise with his wife to the Galapagos Islands, he felt a “supraclavicular lump,” a lump above the collarbone. His doctor encouraged him to go on the long-anticipated 2-week trip anyway. “I went there with a cloud over my head because I did not know if this sucker was malignant or not,” he recalls. When he returned, he found out that he did indeed have advanced-stage breast cancer. A CT scan showed evidence of cancer in the lungs and chest.
Currently he is on Ibrance and two hormonal therapies — Lupron and letrozole — and getting good results. “I’m just hoping that this treatment works, and if it loses its effectiveness, I’ve been assured there are other big guns in the armory that can be brought to bear on it.”
He says he is determined to stick to the motto he has followed from the very beginning: “I don’t let cancer define me.” He still plays the violin and is taking lessons again to combat the effects of chemobrain on his playing. “The orchestras are my connection to the community,” Barry says. “It is the way I am able to contribute and volunteer my time, and I love doing it.”
He also enjoys nature walks, birding, and canoeing and biking as his energy level permits. He spends time with his beloved wife — “my greatest cheerleader” — his stepson, and two teenaged grandchildren. He hopes to pursue an emerging interest in photography that took root during his Galapagos trip. And he is still an active member of the YMCA, swimming and taking tai chi classes, which boost his mental health.
“Tai chi is very centering,” he says. “It’s about focusing on the moment and trying not to spin the vortex of what-ifs. You end up in a black hole of depression, and I am not going to go that route.”
That’s not to say his treatments aren’t tiring — naps have gone from being an “occasional necessity” to “almost mandatory,” he says — but he’s focused on living life on his own terms and sharing his story to help others. He doesn’t view cancer as a “journey,” which is something one chooses to go on, but instead as an “abduction” against his will.
“I am still on this side of the grass, right?” he says with a chuckle, but then turns serious. “It’s fortunate that I am here and that’s what I have to look at. Yeah, I’ve got this beast, but I have the tools to fight it as much as I can. We’ve all got to die of something. It’s a matter of how and when — and if you spend that last few days or even years of your life bemoaning your fate, you’ve wasted them. And I’ll do anything that I can do to get the word out [about breast cancer], especially about the male perspective.”
And then his characteristic humor returns: “I try to set attainable goals, and my goal I’m focused on now is to make somebody smile every day, and if I’m doing that then I know I haven’t lost my sense of humor. And if I ever lose my sense of humor, warped as it is, just shoot me.”
[This content made possible by Lilly Oncology.]