Bret Miller, breast cancer survivor and co-founder of the Male Breast Cancer Coalition, discusses his unique story and how genomic testing helped him determine the best course of treatment for his disease. He also talks about his nonprofit organization and its mission to help spread the word that breast cancer does not discriminate.
Bret first discovered a lump in his breast at the age of 17, but for seven years all the doctors told him not to worry. When he was 24, Bret had a mastectomy. Since his Stage 1 MALE BREAST CANCER diagnosis, Bret made a promise to his surgeon vowing no man will ever feel alone when they hear the words, “You have breast cancer.”
Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, so glad that you could join us once again. Our guest this afternoon is Mr. Bret Miller, he’s a cancer survivor and co-founder of the Male Breast Cancer Coalition and he’s joining us today to discuss his unique story and how genomic testing helped him to determine the best course of treatment for his breast cancer he’s also going to talk about his nonprofit organization and their mission to help spread the word that breast cancer does not discriminate. Welcome to Health Professional Radio Bret.
Bret Miller: Thank you for having me.
Neal: What is it that you do other than being the co-founder of the Male Breast Cancer Coalition?
Bret: I share my story to anybody that’s willing to listen to help other men feel comfortable with hearing the words “You have breast cancer.” Because for most men it’s emasculating, it’s kind of embarrassing to hear those words ‘breast cancer’ because immediately you think pink, you think women, you think it “There’s no way I have breast cancer. I don’t have breasts.” Well everybody has got breast tissue and that’s what it’s affecting so it’s just building awareness, making sure that men know that although it is rare, they say is 1% of all breast cancer cases and roughly 2,500 are diagnosed every year and of that 400-450 will die from it because they do not know that they can get breast cancer. So it’s just building awareness, spread the word that men don’t be afraid to touch yourself and get to a doctor if you found a lump in your breast just like if it were testicular cancer or something else.
Neal: Now you were in your early 30s now correct?
Bret: Correct, yeah. I’m 32 right now.
Neal: But when you were diagnosed, you were just out of your teens. You were 20 years old, you’re a young man and you’re facing breast cancer. What was it like being that young and with as you say the stigma surrounding breast cancer when it’s mentioned to a man especially somebody coming right out of their teens?
Bret: Long story short, I was 17 when I first found the lump. I went to different different doctors within that year span of first finding it and both doctors said there was a calcium buildup. That was seven years, I was 24 when I finally I had health insurance for well over a year through my job but I finally got time to go to the doctor to do a physical. I didn’t have any symptoms or any feelings that I was sick or needed to go to the doctor for any reason. It was just one of those “Well I haven’t been in some time so let’s just let’s just go.” So I was 24 when I was officially diagnosed and definitely hearing those words “It’s breast cancer” was definitely a shell shocker. I didn’t think it was something that would be possible let alone something for somebody that young and everybody’s always asked “Well why wouldn’t the doctors at the time at 17 think that it was breast cancer?” Well that was early 2000, I highly doubt that any doctor at any given point at that time was thinking that a 17 year old male has breast cancer so I don’t blame them for any of it or misdiagnosing or anything along those lines. It was just definitely an extremely rare occurrence. There’s there was another twenty four old male somewhere in Europe diagnosed around the same time, his was much later stages but it was definitely just at first embarrassing to hear those words. But meeting with my surgeon and him telling me, kind of making me a promise that if I’m willing to share my story because he believes that me being so young that if I’m sharing my story it can help others that he would make sure that I get healthy again. So it’s kind of like we had that agreement and just hearing that just kind of made everything, all the stigma of hearing “You have breast cancer” Just go away and I’m just another breast cancer patient and I’m here to help others.
Neal: Once your primary care doctor, was it your primary care doctor that did the proper diagnosis initially? How knowledgeable was that doctor once they made the diagnosis about male breast cancer?
Bret: He really wasn’t. So I went in just to get a routine physical, they checked all blood work, they did all the standard stuff for a physical. He was almost out the door before he asked me did I have any other question for him or any other concern and that’s when I brought up the lump. He turned around, he looked at it and he looked straight at me and says “Let’s get you signed up for an ultrasound.” So within a couple days I was sent to go get an ultrasound at the Women’s Clinic and there they did an ultrasound. The doctor at the clinic it does a triple take on the ultrasound of myself and says to do a mammogram I don’t think that the doc my primary carer was very he was even know a whole lot for breast cancer. He was just your standard kind of doctor, he was not specialized in it at all. So from him he got the ball rolling and then set me up with a general surgeon that removed the lump at first and he was the one that just called me the next day after removing the lump and saying “It’s breast cancer.” He had not fully read the whole report but would read it and get back to me in three or four days. That surgeon, we did not use for the mastectomy in the following surgery. It was a bumpy start at first on getting the correct doctor but I once I was officially diagnosed with breast cancer, of course my mom she took the reigns on everything, called that doctor immediately even earlier than what it should have been because once I got that call, I called my dad I told him “I’m leaving one job, I’m going to the next job. I don’t have time for mom to call and freak out on me regarding everything so if you could wait until I get home from work, I will tell her in person.” And he of course he was like “Yeah, okay. It’s a lot.” Five minutes later my phone rings and it’s my mom. But because of her being a bomb and protective, we were in meeting with that surgeon to get more information from him the next day and then also meeting with other healthcare professionals and my case got beelined to quite a few top doctors around the area. So that helped advance everything for me better than where it was when I started. So I was in with like the top geneticists, the top oncologists, the top surgeon in the area and they were reaching out to their colleagues at other hospitals, John Hopkins and MD Anderson. It was my surgeon whose friend is at MD Anderson down was the one that said “Do not treat this as you would treat a female.” Because he was still going to do it double mastectomy but we were going to do it at a different time. So the morning of my original mastectomy on the right side is when he got the call and so I didn’t have to schedule the second mastectomy at all. So my case, I kind of got beelined to some of the top doctors which was kind of very nice and made the whole journey a little bit easier.
Neal: When did Oncotype DX come into the picture and how did it contribute to the treatment decisions that you finally settled on?
Bret: So Oncotype came in once I started to meet with my oncologist so I met with my oncologist briefly before the mastectomy and then many times following the mastectomy, getting the plans laid out for what treatment was going to happen. At the time he had mentioned about this new test that was out and based on what my cancer was classified as, it would be it would be a good test to do. So we did the it was the Oncotype DX test, they sent the samples off and with all the data that they have and what they were able to compare it to and look at and run all these tests, it said that I had a 22% chance of cancer coming back over a 10-year period but if I were to do chemotherapy, full rounds of chemotherapy and the Tamoxifen or Arimidex hormonal therapy for five years, that it could lower my chances of cancer coming back by almost 10% and I still don’t feel sick. I still don’t feel like I am a cancer patient so I don’t feel tired or anything so I was like “Let’s do it. Let’s get this chemo done.” And even throughout the treatment and stuff, my body, I didn’t have the the aches, the pains, the nausea and a lot of the other symptoms that a lot of other cancer patients go through. I got extremely lucky, so many others are not but I got very lucky in the treatments and I never really felt horrible during. The only thing, the side effect that kind of annoy me the most was losing my hair only in instances because even I was going through all this, like I said I’d never felt sick but the only time that I looked it was when I lost all my hair and but I felt great still. I still had plenty of energy, I was working the entire time I think from my diagnosis date to my last day of chemo I missed at most ten days of work.
Neal: Wow. How invasive was the Onco as far as getting the tissue to be tested?
Bret: No, because they take the tumor itself. So they take the tumor and they shave certain layers off the tumor and it’s on slides so it was not invasive at all. The tumor was already out so there’s already a pathology lab, they were already doing things. It was just pretty much requesting samples of the tumor and being sent out so the only surgery, well the two that I had, the first one was removing the lump that they said was nothing and then they tested it and then it came back as breast cancer and then the mastectomy and during the mastectomy is when they also did the sentinel node biopsy test and that showed that it didn’t spread. So it was the one inch margins around the nipple and the breast tissue in that and those one inch margins that’s all that was taken out so there’s no invasiveness at all…
Neal: Let’s talk about your advocacy group, the Male Breast Cancer Coalition, now you’re the co-founder. Is someone, is another cancer survivor in league with you?
Bret: Originally everything started with the Bret Miller 1T Foundation and if you want a little background of that I’ve always had 1 T in my name I was born shortly after the Royals won the World Series in 1985. My mom chose to name me after Bret Saberhagen, I always yelled at her because I met many other Bret’s throughout my years especially I was younger and they all
had two Ts and I always complained about it. “Why did they have two? Why do I only have one?” Well it came full circle when I was diagnosed and I hopefully I can say this, it was not very bad, just it’s related to breast cancer. I’ve always had one T in my name and now I got one nipple so the Bret Miller 1T Foundation because I was told that the One Nipple Foundation was inappropriate so because this is my way around it. So that’s where everything stemmed from,
that’s where it started and we started gaining steam we started talking and connecting with a lot of people through social media and the internet. And I will tell you, if we didn’t have social media then and everything like that, there’s no way I would be anywhere close to where I am today. I don’t even know if I would be sharing my story as much as I am but we met with Sherry Ambrose out of New Jersey. She is a very strong advocate about this because she had a very close friend who was diagnosed with male breast cancer and witnessed all the stereotypes and the shunning and the pushing away and saying that this just really focused on females from a lot of the press advocacy groups up there. So he survived, I still have not been able to meet him but she started it because of that and she found us and we connected, we talked and it just got a history from there but that’s where it started. She wasn’t immediately affected by it, she was because of a friend and that’s where we started and that’s where we’re at today and putting the word and making sure that men know.
Neal: Well where can we go online and get some more information about your coalition and about male breast cancer in general?
Bret: The malebreastcancercoalition.org. On there, we have everybody, all of our survivors’ stories are up there. We have an In Memoriam page on there as well, as well as many other links for them to reach out outside of just us if they need more information. There’s also breast self exam videos that I did to show men how to properly do your monthly exams because you are your own best advocate. If you find a lump, get your butt to a doctor and if that doctor tells you nothing and you don’t feel comfortable, go to another doctor. Don’t stop until you get the answers that you’re comfortable with.
Neal: Well Bret thank you so much for coming in, big kudos for your awareness efforts and your Male Breast Cancer Coalition. I’m wishing you all the best even more than what you’re receiving now. Thank you so much for joining us today.
Bret: Thank you very much, it’s an honor.
Neal: You’ve been listening the Health Professional Radio, I’m your host Neal Howard. Transcripts and audio of this show are available at hpr.fm and healthprofessionalradio.com.au. You can also subscribe to this podcast on iTunes, listen in and download at SoundCloud.