John
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At age 54, John noticed his left breast was swollen and immediately went to his doctor, who referred him to a breast surgeon. John recalls the surgeon greeting him with, “why did your doctor send you to me?” John explained the situation and recalls the surgeon dismissed him saying, “well, it's breast tissue. Men have breast tissue,” to which John insisted that “something is not right.” The surgeon then ordered a mammogram and needle biopsy; both came back negative. A year later, John felt a lump in the same breast. A different breast surgeon, who took John more seriously, ordered a mammogram and biopsy, which showed Stage 0 in situ breast cancer. John knew it was caught early and that they were “going to get through it.” John scheduled a full mastectomy, took off several weeks from work and asked his boss to share the news with his colleagues, saying “I want everyone to know I have breast cancer.” From the moment John was first diagnosed, he felt a responsibility to make this information as public as possible, because “not many men get breast cancer.” Surgery was not too painful, despite the drainage tubes, and he recovered well.
Two years later, the lump came back, and he learned he had Stage 1 breast cancer. After surgery, he had 30 radiation treatments, five days a week for six weeks, complicated by pneumonia. He says he “never felt afraid,” noting that he got “through it” with the support of his wife, children, and friends, along with “being positive” and maintaining his sense of humor. He is now taking a 5-year course of tamoxifen, an estrogen blocker, noting he is willing to put up with side effects in order to reduce his risk of recurrence. Now in remission for more than three years, he considers himself not just a two-time breast cancer survivor but also a “thriver.”
As a male breast cancer patient, John says it was immediately clear that “clinics are geared towards women.” Knowing he had breast cancer that “needed to get taken care of,” wearing the pink gown, clearly intended for women, didn’t bother him. Reflecting on the first encounter with the breast surgeon who shrugged off his lump, John notes he could have said, “you know, I suppose you're right. It's OK” and gone home and “done nothing.” But instead, he advocated for himself. He wants everyone to know that “men get breast cancer” and that is nothing to be ashamed of!
John manages a couple of other conditions with medication, so he is no stranger to doctor appointments, however he recognizes a lot of men don't want to go to the doctor and don’t like to go to the hospital, so might be more prone to “feel a lump and say, ‘oh, it's no big deal.’” Thus he has “felt an obligation to make others comfortable” with his breast cancer diagnosis. Now retired, he is deeply engaged in raising public awareness about male breast cancer through his Facebook posts. He was written up in Men’s Health magazine and participated in a “shirts off” picture campaign with 16 other male breast cancer survivors to show that “it's not an embarrassing thing.” He isn’t much of a “tattoo guy,” but plans to get one of a pink and blue ribbon that says, “men get breast cancer,” where everyone can see it. John has summer plans “to be on the beach,” and you can bet his “shirt will be off.” John hopes his public advocacy exemplifies that “talking about it is a good thing,” because more people need to know it is important “to check yourself—men, women.”
John thought his surgeon did not show concern for his feelings when ordering diagnostic tests.
John thought his surgeon did not show concern for his feelings when ordering diagnostic tests.
I had noticed that my left breast had swelled. And it was noticeably larger than the right breast. So, I went to my doctor. And, you know, it was an uncomfortable feeling. It was kind of ticklish. And it just didn't seem right. So, I went to my doctor. And I explained to him about how my left breast was swelled. And it was uncomfortable. So, he examined me. And he sent me to a surgeon who specialized in breast surgery.
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He really made me feel like I was interrupting his day when he said to me, “Well, why did your doctor send you to me?” And then I explained. And then, you know, he was examining me when he said, “It's breast tissue. Men have breast tissue.” That's the way he said it. I thought, well, that's obvious. But I said, “Something is not right. This is not right.” And that's when he reluctantly, he really sounded like he was reluctant. But he said, “Well, I guess I'll have to order some tests.” There was no concern. There was, there was absolutely no concern or showing of concern for my feelings and what I was telling him. So, but I thought to myself, “That's okay.” I knew then I was going to find another doctor.
John experienced a variety of physical consequences from the radiation treatment.
John experienced a variety of physical consequences from the radiation treatment.
It took a lot more out of me than I thought. My lungs were damaged a bit and I did have the pneumonia as a result of the radiation. They've healed pretty well. But yeah, I had a little bit of fatigue. Of course, the burning, and it was very - and, you know, they put you on a bed and they have this device. And they really concentrate it in that one area. They're really targeting, and yes, your skin gets burned.
John notes that tamoxifen can cause erectile dysfunction in men, but chose a full course of hormone therapy to reduce his risk of recurrence.
John notes that tamoxifen can cause erectile dysfunction in men, but chose a full course of hormone therapy to reduce his risk of recurrence.
And there is a side effect for men that causes a lot of men to stop taking it. And that's ED, Erectile Dysfunction. And a lot of men will stop taking it. Personally, I wouldn't let that stop me because I don't want to have cancer. I really don't. So, [uh] and the doctor suggested a three-year regimen. And I asked him, could I do five years? He said, yeah, that would be fine. Because I really want to be sure that it doesn't come back.
John’s concerns about early signs of cancer were dismissed by his doctor.
John’s concerns about early signs of cancer were dismissed by his doctor.
I went to his office for my first meeting. And I'm not kidding you. I walked into his office. And he said to me, “Why did your doctor send you to me?” And I said, “Well, my left breast is swelled. And something's not right. It feels uncomfortable. It's just not right.” So, he had me remove my shirt and he examined me. He said, “Well, it's breast tissue. Men have breast tissue.” And I'm thinking, OK. And I said to him, “I understand that but something is not right. Something is not right.” And he said, “Well, I guess we'll have to order some tests.”
John’s employer offered him deskwork while he was dealing with treatment.
John’s employer offered him deskwork while he was dealing with treatment.
They were so nice to me. They wanted to give me an easier job at work where I didn't have to move around as much, but it didn't bother me. I wanted to just keep going, and I didn't—I didn't really want to be made to feel different or be made to feel like when I came back, I said, "Oh. No, I'm fine. You don't have to put me in the central control area", for instance, where you would sit all day and push buttons. That's a very easy task. I wanted to be up in the block area doing something where I'm walking and exercising, and being active.
John thought his surgeon did not show concern for his feelings when ordering diagnostic tests.
John thought his surgeon did not show concern for his feelings when ordering diagnostic tests.
I had noticed that my left breast had swelled. And it was noticeably larger than the right breast. So, I went to my doctor. And, you know, it was an uncomfortable feeling. It was kind of ticklish. And it just didn't seem right. So, I went to my doctor. And I explained to him about how my left breast was swelled. And it was uncomfortable. So, he examined me. And he sent me to a surgeon who specialized in breast surgery.
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He really made me feel like I was interrupting his day when he said to me, “Well, why did your doctor send you to me?” And then I explained. And then, you know, he was examining me when he said, “It's breast tissue. Men have breast tissue.” That's the way he said it. I thought, well, that's obvious. But I said, “Something is not right. This is not right.” And that's when he reluctantly, he really sounded like he was reluctant. But he said, “Well, I guess I'll have to order some tests.” There was no concern. There was, there was absolutely no concern or showing of concern for my feelings and what I was telling him. So, but I thought to myself, “That's okay.” I knew then I was going to find another doctor.
John gets the word out that “men get breast cancer.”
John gets the word out that “men get breast cancer.”
So, I was just never afraid of it. I was never embarrassed. A lot of men feel embarrassment by it. You know a lot of men; they just don't want to talk about it. So, for me, that was never an issue.
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I wanted to get the word out. It was interesting because my cancer came in the month of October, November, both times. And I was going to work and buying a Diet Coke at the gas station and paying a dollar for a paper ribbon for breast cancer research. And I thought, ‘Wait a minute. We don't talk about men.’ I am, and I would do it. And I'd do it two or three times. So, I got the ribbon. I got the marker. And I wrote as large as I could, ‘Men get breast cancer’. And I put my full name. And I said to the clerk, “Would you please put this right here at the register right up front because I want people to see it?” I went to a 5K run and walk, and I went by myself. I kind of knew what to expect, what it was about. But I didn't feel I had a voice because there were hundreds of people. And I didn't think to bring a sign that said, ‘Men get breast cancer’. I just went. And I wore my breast cancer shirt. But I really, you know, kind of felt like I didn't know how to make my voice heard. So, when I came back the following year, we went. And my wife and daughters came. And they made signs. And I talked to my doctor. And I was able to, she talked to the organizer of the run. And I got to go and go on stage and hand out the awards for the runners in their various categories, first, second, and third place. But I also got to get up in front of 250, 300 people. And I got to say, my name is John, and I'm a male, two-time male breast cancer survivor, and ‘thriver’.
John explains that men with breast cancer are also affected by hormone therapy.
John explains that men with breast cancer are also affected by hormone therapy.
And there is a side effect for men that causes a lot of men to stop taking it. And that's ED, Erectile Dysfunction. And a lot of men will stop taking it. Personally, I wouldn't let that stop me because I don't want to have cancer. I really don't.
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I do have some of the side effects from the medication, the ED aspect of it. And a lot of men will stop taking it because of that. I'm not going to do it. But that's OK. That's something that my wife and I can deal with. It's only a temporary thing really because about another year and a half of it and then I'm going to be stopping it. So, it’s just-- you could call it a bump in the road. It's just one aspect that you manage it. And it's not forever. But it's never caused me to step away from anything or anybody. It doesn't really, you know, create a problem in my life because it's not a forever thing.
John connected with other men with breast cancer through Facebook.
John connected with other men with breast cancer through Facebook.
I connected with the [ORGANIZATION] on Facebook, and they put the word out on male breast cancer. They travel all over. And they were kind of a savior for me because I always knew that I needed to talk about this. When I went to the [ORGANIZATION] gathering, they do a photograph, and there were 16 men there, and I met them for the first time since my diagnosis in 2013. Sixteen other men with breast cancer. It was an amazing experience. It's like, we were instantly friends for life, as though we've known each other because you have something in common.
You don't have anyone to talk to. I can talk to my friends about it, but they don't really have an understanding, which is—I understand that completely. So, that was a life-changing experience. It truly was. The minute I walked into this hotel lobby where they were having a meet and greet, we just threw arms around each other and hugged. And I wanted to know their story and tell them mine and find out about each other. It really was incredible.
John gets the word out that “men get breast cancer.”
John gets the word out that “men get breast cancer.”
So, I was just never afraid of it. I was never embarrassed. A lot of men feel embarrassment by it. You know a lot of men; they just don't want to talk about it. So, for me, that was never an issue.
---
I wanted to get the word out. It was interesting because my cancer came in the month of October, November, both times. And I was going to work and buying a Diet Coke at the gas station and paying a dollar for a paper ribbon for breast cancer research. And I thought, ‘Wait a minute. We don't talk about men.’ I am, and I would do it. And I'd do it two or three times. So, I got the ribbon. I got the marker. And I wrote as large as I could, ‘Men get breast cancer’. And I put my full name. And I said to the clerk, “Would you please put this right here at the register right up front because I want people to see it?” I went to a 5K run and walk, and I went by myself. I kind of knew what to expect, what it was about. But I didn't feel I had a voice because there were hundreds of people. And I didn't think to bring a sign that said, ‘Men get breast cancer’. I just went. And I wore my breast cancer shirt. But I really, you know, kind of felt like I didn't know how to make my voice heard. So, when I came back the following year, we went. And my wife and daughters came. And they made signs. And I talked to my doctor. And I was able to, she talked to the organizer of the run. And I got to go and go on stage and hand out the awards for the runners in their various categories, first, second, and third place. But I also got to get up in front of 250, 300 people. And I got to say, my name is John, and I'm a male, two-time male breast cancer survivor, and ‘thriver’.
John wants the medical community to change how they approach men with breast cancer.
John wants the medical community to change how they approach men with breast cancer.
And the medical community, they really, we have to change the way they look at men. They give you paperwork and there's a lot of questions that are geared for women: when was your last period and so on. They should have two separate bits of paperwork for you to fill out, one geared towards men. And there, I'm sure, questions you can ask specifically for men.
John says modern medicine methods were “the way to go” for him.
John says modern medicine methods were “the way to go” for him.
INTERVIEWER: Have you ever considered any complementary or alternative treatments like acupuncture or massage or meditation?
JOHN: Right. Certainly, medication. Now, I haven’t done it. But it’s something that would be good thing to do. I’m not a fan of homeopathic methods. I’m sure improving your day absolutely will help. [uh] Massage therapy would be great. [um] Acupuncture I’ve never considered.
PART TWO...
pretty much, modern medicine methods for me was the way to go with my treatments. [uh] But yeah.