In August 2016, Stephen Sala found a small lump on the right side of his chest. His doctor thought it was a cyst, but scheduled an ultrasound to be sure. His ultrasound results were concerning, so he had a mammogram the same day, followed a needle biopsy about a week later. The results showed breast cancer. He was 41. He decided to have a bilateral mastectomy to reduce his risk of contralateral disease; pathology results showed that he had cancer in his left chest as well. As he went through diagnosis and treatment, Steve experienced a number of awkward situations. Almost all mammography offices are in women’s health care centers, with no consideration for men. Forms asked when he had his last period, how many children he had given birth to, and if he was in menopause.
Listen to the podcast to hear Stephen talk about:
- how he came to terms with a breast cancer diagnosis
- his ideas on how the process can be made less clumsy for men
- how he talked to his children about his diagnosis
- how he found support
- advice he would offer other men
Running time: 19:13
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Show Full Transcript
Jamie DePolo: Hello, everyone. I’m Jamie DePolo, the senior editor at Breastcancer.org. Welcome to our podcast today. Our guest is Stephen Sala, who is going to talk about the unique challenges of being a man diagnosed with breast cancer.
In August 2016, Stephen Sala found a small lump on the right side of his chest. His doctors thought it was a cyst, but scheduled an ultrasound to be sure. His ultrasound results were concerning, so he had a mammogram the same day, followed by a needle biopsy a week later. The results showed breast cancer. He was 41. He decided to have a bilateral mastectomy to reduce his risk of contralateral disease. Pathology results showed that he had cancer in his left chest as well. His genetic test results showed he was negative for BRCA1 and BRCA2 mutations. He also had a MammaPrint test to look at the genomics of the cancer, and the results showed that he had a low risk of recurrence. Stephen also will be getting an Oncotype DX test to confirm these results. Stephen says that because the cancer was detected early and because of the cancer’s characteristics, the likelihood that he’ll have chemotherapy is low. The cancer was hormone-receptor-positive, so he will be taking tamoxifen for 10 years.
As he went through diagnosis and treatment, Stephen experienced a number of awkward situations. Almost all mammography offices are in women’s healthcare centers with no consideration for men. Forms asked when he had had his last period, how many children he had given birth to, and if he was in menopause. Stephen is here today to talk about his experiences and offer some ideas on how the process can be made less clumsy for men.
Stephen, welcome to the podcast.
Stephen Sala: Thank you for having me, Jamie.
Jamie DePolo: We are so happy you are here, because not a lot of men are diagnosed with breast cancer, I believe the statistics say it’s 1% of diagnosed cases are in men. And in your case, too, not a lot of younger men are diagnosed. And I know as we were talking earlier, you had a hard time just finding people to talk to about it. So, what were your initial thoughts about being diagnosed? Was it disbelief, shock? How did you feel?
Stephen Sala: Well, it took me about a month before I got the actual results. So I did a little research on my own. So I thought it was either a cyst or a tumor. I was preparing myself that it could be cancer. So I did a lot of research — took me about 4 weeks to really get my results back. So I was prepared for that. But once I found out, I started telling people that I had a tumor on my chest; I had a lump on my chest that was cancer. So I wasn’t telling people immediately that I had breast cancer because I didn’t know how to say that to friends, family, and — to anybody.
Jamie DePolo: So it was easier to say cancer than breast cancer?
Stephen Sala: It was easier to say that I had cancer on my chest. I had a tumor on my chest.
Jamie DePolo: Now, did you feel there was a stigma associated with a man having breast cancer?
Stephen Sala: Yeah, definitely. Definitely, especially when I went to get my mammogram. I went into a women’s center, and they were asking me questions about my period and my menstrual cycle and things like that. So that automatically gave me that [stigma] that men shouldn’t have this disease or men don’t get this disease.
Jamie DePolo: Okay, and how did your male friends react?
Stephen Sala: So, they reacted pretty much the same way everybody has reacted: that “I didn’t know men get breast cancer. I didn’t know men had breasts. I didn’t know they had tissue.” They were shocked. I would say 95% of them were shocked when I eventually came out and told people that I had breast cancer. So it’s just that predisposition of men thinking that there’s no way they can get breast cancer.
Jamie DePolo: Talk to me a little bit, because you are younger. You’re 41. What kind of had to happen in your mind to accept the diagnosis of breast cancer, and talk about it, and tell people, “Yes, I have breast cancer,” as opposed to, “I have cancer on my chest.”
Stephen Sala: Well, because I did the research and I understood the disease a little more, and I had a really great team, and I do have a great team. My medical team is unbelievable. So they have helped me through this whole process from day one when I had my mammogram, where I met Polly, the nurse at Suburban Community. They just helped me feel comfortable about the disease and just doing research. I have a very good support system behind me that have really helped me get through this whole process.
Jamie DePolo: Okay. And you said the reaction of your male friends was the same as female friends. I just wondered, were women maybe a little more empathetic or more knowledgeable? I’m just curious, because — since it is considered a woman’s disease?
Stephen Sala: Sure. I would say they were more empathetic, but men were also empathetic, even though they had no idea. I have a lot of friends that have come to me that since have gone to the doctors, gotten physicals, checked other lumps, not even on their chest, in other areas. I had two friends that went last week. So just by having me talk about it, had them just check themselves out and go to the doctors. And even at my age, at our age, they went to the doctors and felt okay with saying, “I have a lump. Can we take a look at this?”
Jamie DePolo: So a couple of small good things came out of it, which is great.
Stephen Sala: Sure, just in the last week itself.
Jamie DePolo: And I know you talked about being asked “How many children you’ve had? Are you in menopause? Last period?” What, to you, is the most awkward thing that happened as you were going through diagnosis and treatment?
Stephen Sala: Like I said earlier, the first time I went in to get my mammogram, I was sent in to just get an ultrasound, and I went into a women’s center. As soon as you walk in, it’s women’s OB/GYN center, breast center. So initially, right there, that was the initial awkwardness that I felt. And then moving forward from there, I just educated myself, and I was okay with it at that point. Like I said, with my support system and people really supporting me, I didn’t get any bad feedback from anybody. It just went from there.
Jamie DePolo: I’m imagining you had to do a little bit of education, too, perhaps with staff in the center or perhaps with other people there. Because I’m imagining — and this could be wrong — but I’m imagining that when somebody sees a man in a mammogram center, they figure he’s there with a woman, and supporting, and you were not.
Stephen Sala: I actually went in by myself because we had no idea that… We didn’t think it was going to be cancer. So it was kind of a routine exam. My primary care physician said, “Just go in. It’s probably a cyst, but get this ultrasound.” So, thinking nothing of it, we went in, I went in by myself, as a man, not knowing that I’m going into a women’s center. I probably would have taken my wife at that point. But went in and got tested, and then right from that ultrasound, they put me in to get a mammogram. And that’s when I knew that it was probably something serious. They saw something that they didn’t like. And then from there, they sat me down and said, “You need to get a biopsy.” But from that point on, from the nurse to my surgeon, they’ve communicated with me, educated me, really just been there for me and gave me every piece of information that I asked for. That was a big help with my whole attitude right now and my recovery right now.
Jamie DePolo: Okay, and since you’ve been through this, and kind of experienced the clumsiness, the awkwardness, do you have suggestions on things that can perhaps change or be made more accommodating?
Stephen Sala: I think it needs to start with your primary care physician. I think they need to do tests. They need, when they do the physicals on men, they should be checking, and they should be educating you. And I think they need to be educated more. Initially, they said, “There’s no way you have breast cancer. You’re young, 41. You’re in great shape. Your bloodwork’s great. It’s just a cyst.” So he didn’t prepare me too well for that news. He didn’t prepare me that, “Where I’m going to send you is a women’s center.”
Jamie DePolo: Oh, so you had no idea?
Stephen Sala: No, I had no idea. So I just went, and I was trying to go that day, but they couldn’t see me that day. I had no idea what… I was going to the hospital, and that was it. So I wasn’t prepared. So I think it starts at that initial expectation and setting that up and educating from the very beginning. So I think that would have helped, but I’m okay with things. It took me a little while, but I’m okay at this point.
Jamie DePolo: Sure, and maybe some forms tailored to men?
Stephen Sala: Forms, information online, to — everything talks about women. When you start doing research, it’s all about women, how to check, it’s going to be a woman that you see on the internet. So just from that, the forms should say, “Are you male or female?” Maybe not going into a women’s center? But that might be hard to change because it’s so predominant at this point. But just, I think initially, with having… I think your primary care physician should educate you a little bit more and set those expectations up front, and I think that would help going into that situation.
Jamie DePolo: Since you tested positive for a gene… or no, you did not. Excuse me.
Stephen Sala: I did not.
Jamie DePolo: I’m sorry. Does breast cancer run in your family though? Was there any family history?
Stephen Sala: It does not. Cancer really doesn’t run in my family either, so there was no reason for them to think that I had cancer or breast cancer, even be tested for it. So I found it on my own. I found the lump on my own. So it was my own doing, and being okay with it and going to the doctor immediately that detected it very early. The prognosis looks very good at this point.
Jamie DePolo: I’m curious, too. I know you talked about, like, a self-exam and all the examples online feature women. Have you, now that you’ve been through this, are you educating men about how to do a self-exam? Because, as you said, perhaps primary care doctors aren’t necessarily as aware of this as they should be? So it could — men are going to have to be their own advocates.
Stephen Sala: They do have to be their own advocates. They need to check, but then when they go to get their physical, they need to talk to their primary care physician and let them know that, “I have a friend or I know somebody that’s my age that had breast cancer, please check me, and do the exam on me.” So you definitely have to be aware of your own body, but also you almost have to educate the primary care physician, and let them know that this could happen. This could happen to me. It happened. It’s very rare, but it does happen.
Jamie DePolo: Right, it does. Yeah, right, it happens. And from what I know, the way to do a breast self-exam on a man is pretty similar to the way a woman would do it. It’s just, you know, a different sort of shape. And also to be very aware of changes in your body. So know the way it’s always been, and then notice if anything changes.
Stephen Sala: It’s easier on a male because they don’t have as much tissue. So it’s easier. Like, for me, I saw it.
Jamie DePolo: Okay, so it was actually sticking out?
Stephen Sala: You could actually see it by the way I moved my arm. So it’s easier for a male to find a lump. So it’s just that, it’s their predisposition that if they do find a lump, they don’t go to the doctors. They don’t think it could happen to them. And that’s why, I think 440 men die each year from breast cancer, and only [2,600] are diagnosed. So it’s a high percentage of men that die because they’re waiting too long. So it’s a very treatable disease when they go and get looked at immediately when they find that lump.
Jamie DePolo: You’re a father. You have three young kids. How did you talk to your children about this, or did you?
Stephen Sala: I did. I waited a couple of weeks because my surgery was scheduled a month out from when I got diagnosed. So we took time. I actually sat down my oldest son first by himself because he was going to understand it a little bit more and be more levelheaded with it. So we sat down, and I spoke to him about it, that it’s breast cancer, that it’s very curable, very treatable. We caught it early, that I’m going to have surgery done. And then about a week later, we told my twins, who are 11. And we were honest with them. We told them exactly what it was, that I’m going to have surgery, that I’m not going to be able to do some things with them for the next month, 2 months, but once I have the surgery, everything’s going to be out of me, and we’re going to recover well from it. So we were very honest with them, but they’re at an age, at 13 and 11, that they understand it a little bit. They’ve been around it. They’ve been around friends and family that have had cancer. So they’re very aware of it.
Jamie DePolo: Did they think it was strange that you, as a man, had breast cancer? I’m just curious if that sort of societal idea had filtered down to kids that young?
Stephen Sala: Yeah, they did not. If they did, they didn’t tell us. So they haven’t said anything like that. I’ve been very public about it and talked a lot about it at this point. So they’re hearing things, but they haven’t really said a whole lot to me about it, but they’ve been good with us. I definitely told them that it’s not contagious. That was one question that they’re going... that most kids are going to ask. “Is it contagious?” Can they get it? Are they susceptible of getting this disease? And we assured them that it’s not contagious at that point. So that’s another thing you really have to go over with the kids.
Jamie DePolo: Right, well, in a way, that’s kind of good because they don’t have any preconceived notions, and now, they can just be aware. Like this is something we need to think about, you know.
Stephen Sala: Sure.
Jamie DePolo: Now, you talked about, it was a little bit hard to find support, to find other people, similar people, with the same diagnosis. And I know you did find someone, and it was kind of serendipitous. And I’m wondering if you could share that story?
Stephen Sala: Yes, so I wasn’t looking for the advice. I wasn’t looking for these support groups, but we happened to run into an individual that is a survivor, 6-year survivor. He’s part of the Male Breast Cancer Coalition. The day before my surgery in New York City, he was on the TODAY Show with about 10 other women that were survivors, and the one male really stood out to me because he was talking about that he was a cancer survivor for 6 years, and I’m already having this anxiety of going through surgery the next day.
So I immediately walked over to Michael Singer and had a conversation with him. So I was open about it. And from there on — I didn’t know he was part of that organization. From there on, he started emailing me. They connected me with this organization. They’ve been wonderful. They’ve given me so much support. I’ve connected with a lot of other folks through that organization, read their stories, and know that there’s other people like me out there.
So that was by fate. I don’t know if I would have ever found them. My surgeon had given me, at the hospital, three sites to go on, said, “Don’t go crazy, don’t start looking at research and looking at all this information. Here’s three sites that we want you to look at, don’t go on the internet and start diagnosing things.” So I didn’t do that. I didn’t even go on those sites. I went on maybe one or two and did a little bit of research, and I just took the advice from my doctor at that point. And then when I met this group, from there, it’s been great. They’ve helped me raise awareness, start talking about and feeling comfortable about it, and having conversations about it.
Jamie DePolo: You mentioned you had a strong support network, and I know your family’s been very supportive. What was different about finding these other men that had been diagnosed? What additional things did they help you with?
Stephen Sala: Really, the emotional piece of it. Going through what their emotions were, how they’re reacting to certain treatments, just really trying to… Because everybody’s different. Women are going to react differently to tamoxifen. Men are going to react differently to tamoxifen or chemotherapy. Just having that support there, having that more emotional support has been very helpful to me. And really just having — I see what they do. They’re raising awareness every day, this group, and it’s awesome. And more and more people are hearing about it now.
Jamie DePolo: Okay. And one last question. What advice, now that you’ve been through the diagnosis — some treatment, but continuing with treatment — if another man is recently diagnosed, would you have advice for him? What would you say?
Stephen Sala: If they’re diagnosed or that they have found…?
Jamie DePolo: Well, either, or would it be different?
Stephen Sala: So yeah, so if they found a lump, definitely go immediately. Go to your doctor. Have that conversation and have them check you out. And you know, educate yourself also on what it could be. If you are diagnosed, I would say they could contact me. Look at Male Breast Cancer Coalition. They’re a great support group. Look at the information that you have at Breastcancer.org. There’s some other local organizations, too, that could provide advice. But be open and honest and talk to your family about it. Get that support system. That really helps with your attitude and your recovery, having people behind you.
Jamie DePolo: Okay. Stephen, thank you so much. I think this is going to help a lot of people, and I am so grateful that you decided to share your story and be public with us so that we can help educate a bunch of other people.
Stephen Sala: Great, any way I could help. I appreciate it.
Jamie DePolo: Thank you.