Chapter 19: A Survivor of Male Breast Cancer
Files
Description
Dr. Bogler begins this Chapter by talking about his surprising diagnosis of stage three male breast cancer in September 2012. He notes that he delayed being examined for a long time “because I’m a guy” and because he couldn’t believe he’d gotten such an “absurdly rare” disease. He describes his course of treatment.
Dr. Bogler then talks about how his perspective changed when he began to experience treatment and the institution from the perspective of a patient, noting how “amazing” MD Anderson is and how many individuals are involved in a single patient’s care. He describes the energy in the patient areas as “sustaining” and communicating a “can-do optimism.”
Next Dr. Bogler talks about the ways in which cancer changed his life, expanding his connections with people with cancer, and giving him a keener sense of his own mortality, since there are no good longevity figures for men with the disease. He explains that he and his wife take more interesting vacations now. He talks about the effects that the cancer diagnosis had on his marriage.
Dr. Bogler says that “you never quite come to terms with cancer,” which “robs you of your innocence.” He explains his own anxieties about recurrence, but notes that working at MD Anderson provides a great deal of meaning in his life. He says his “personal mission” is to support the people who see patients.
Dr. Bogler then discusses work as an advocate for patients with male breast cancer. He is proud of his current work with photographer, David Jay, on “The Scar Project,” a series of photos of male and female survivors of breast cancer. He also notes that he is creating visual art as a form of self-therapy. He says that as a professional in oncology, there are things he cannot say about dealing emotionally with cancer.
Dr. Bogler talks about David Jay’s exhibition of photographs of cancer survivors at MD Anderson and the impact of seeing these images that gave patients a new presence. He notes that David Jay’s photo of him appeared in the New York Times (see below). He talks about his own work on a project called, “Tumor in a Box.”
Photo by David Jay, from New York Times article, “When Men Get Breast Cancer,” 25 February 2014.
Dr. Bogler then discusses his blog, “Entering the World of Pink.” He explains that he knew he would never “keep this quiet” at a cancer center and wanted to use his disease as an opportunity to raise awareness, since men with breast cancer “stand in the shadow of the world of pink.” He stresses the need for research on men, then explains the content of his blog, written from the perspective of a scientist about the biology of cancer. That activity spurred his interest in advocacy for more funding and clinical trials focused on male breast cancer. He explains several issues around funding and clinical trials, explaining the ethical necessity of including men in breast cancer studies.
Dr. Bogler then explains why he uses social media to get his message out, citing his love of technology and the fact that he is an introvert. He talks about some memorable responses to his posts on Twitter and Facebook. He explains that he has been using social media to recruit men for David Jay’s “Scar Project,” saying “there’s some comfort in that.”
Identifier
BoglerO_02_20141117_C019
Publication Date
11-10-2014
Publisher
The Historical Resources Center, Research Medical Library, The University of Texas Cancer Center
City
Houston, Texas
Interview Session
Oliver Bogler, PhD, Oral History Interview, November 17, 2014
Keywords
The Patient; Personal Background; The Patient; Experiences Related to Gender, Race, Ethnicit; yProfessional Values, Ethics, Purpose; Activities Outside Institution; Institutional Mission and Values; MD Anderson Culture; Human Stories; Offering Care, Compassion, Help; Patients; Cancer and Disease; This is MD Anderson; Formative Experiences; Discovery, Creativity and Innovation; Patients, Treatment, Survivors; Dedication to MD Anderson, to Patients, to Faculty/Staff; Personal Reflections, Memories of MD Anderson; Patients, Treatment, Survivors; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care
Topics Covered
The Interview Subject's Story - The Patient; Personal Background; The Patient; Experiences Related to Gender, Race, Ethnicit; y Professional Values, Ethics, Purpose; Activities Outside Institution; Institutional Mission and Values; MD Anderson Culture; Human Stories; Offering Care, Compassion, Help; Patients; Cancer and Disease; This is MD Anderson; Formative Experiences; Discovery, Creativity and Innovation; Patients, Treatment, Survivors; Dedication to MD Anderson, to Patients, to Faculty/Staff; Personal Reflections, Memories of MD Anderson; Patients, Treatment, Survivors; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.
Disciplines
History of Science, Technology, and Medicine | Oncology | Oral History
Transcript
Tacey Ann Rosolowski, PhD You had raised the issue of your own experience as a cancer patient, and I did want to take the opportunity to ask you a bit about that. How would you like to start that story?
Oliver Bogler, PhD At the beginning. (laughs)
Tacey Ann Rosolowski, PhD At the beginning. (laughs) I thought that might be it.
Oliver Bogler, PhD Yeah. I feel like I’ve told this story a million times.
Tacey Ann Rosolowski, PhD I bet you have, but I appreciate you going on record with it.
Oliver Bogler, PhD Yeah, sure. It’s November now, so we’ve gone through October. October’s a time when I tell it more often than any other month, it being Breast Cancer Awareness Month.
So I’m a breast cancer survivor. I was diagnosed in September of 2012, and it was a fairly typical story, I think not unusual. I felt a lump, ignored it for two or three months, pretended it was something different, couldn’t really be.
The backstory is that my wife is a breast cancer survivor, so she was diagnosed about five years before me, and so I just couldn’t imagine—as I sometimes say, I couldn’t imagine the conversation over breakfast, saying, “Hey, honey, I think I have what you have,” or had or whatever.
Tacey Ann Rosolowski, PhD To what extent is there kind of a psychological impediment for men imagining this or accepting it?
Oliver Bogler, PhD It wasn’t so much—yeah, I think there is that. I’m not sure that for me it was primarily the male, being a man that was the impediment. I knew that men could get this disease. I hadn’t given that much thought, but I knew it was certainly possible. I didn’t think it was impossible. I just couldn’t conceive of the staggering improbability. And, you know, on top of that, my wife and I, we were both diagnosed at the same age, so we’re both about five and a half years’ difference in age. So, yeah, I mean, I just couldn’t believe that.
For men, it’s rare. I mean, there’s 2,200 cases a year in the United States of male breast cancer. It’s about 1 percent of the total breast cancer diagnoses. So I just—yeah, it just struck me as absurdly ridiculous that we would have the same thing at the same age and so on. So, yeah, I mean, it took me a while, and then ultimately it didn’t go away. I remember we were on vacation in Idaho, and I was focused on it particularly, and, anyway, I decided when we got back that I would go to a doctor. I didn’t have a primary care doctor at the time, because I’m a guy, and so I had to find one that took my insurance and had space for new patients.
I only saw this doctor once, and I sort of went in and said, “Hey, I need a sanity check. Here, I have this lump. Do you think I should get it checked out?”
And he said, “Sure, you should get that checked out.”
So that evening, I came home and Irene was already sort of wondering why—she asked me, “Why are you going to—?” She sees my calendar and said, “Why are you going to see a doctor?”
I said, “Oh, just time for a checkup, honey,” which I don’t think she really believed.
But anyway, so that evening I came home and said, “Okay. I’m going to have this thing looked at, so just so you know.” Of course, it wasn’t that I was keeping a secret. I was very conscious about raising her anxiety and concerns, this, of course, given her own history with the disease and so on.
So then I went. Actually, I called Dr. Hunt, Kelly Hunt, and she referred me to the imaging group, so I went and had a mammogram and very soon an ultrasound and then a biopsy, and then it became very pretty clear very quickly. So Dr. Yang, Wei Yang, who’s now the head of our Diagnostic Imaging Group, took care of me there, and I think on the basis of the mammogram it became fairly obvious. But then, of course, it was diagnosed on the basis of the biopsy they took and so on.
And then I went through a very normal course of treatment. Dr. Giordano, Sharon Giordano, is my oncologist. She, I think, has the largest practice of male breast cancer patients at MD Anderson, so I think that makes her one of the world’s experts. Actually, my treatment course was essentially identical to Irene’s. Yeah, I mean, we share a lot.
Tacey Ann Rosolowski, PhD That’s amazing.
Oliver Bogler, PhD Yeah. So I did Taxol. We did chemo. We do chemo first at MD Anderson, because it’s a way of watching whether the tumor responds. So I did eleven weeks of Taxol. I skipped the twelfth week because imaging showed that the tumor wasn’t really paying any attention to the Taxol. It was still growing. And then four cycles of FAC, and then they give you a month off, and then surgery and then another month off and then radiation. Dr. Hunt did my surgery and then Dr. Buchholz did my radiation therapy. So I went straight to the top. (laughs) And now I’m doing Tamoxifen. So it’s been, I guess, close to—I finished in the summer, so it’s—yeah, I guess it’s about twenty months, not that I’m counting.
So I have no evidence of disease now. The final diagnosis was stage three. After my surgery, Dr. Hunt found a few extra lymph nodes, so I got a post-surgery upgrade to stage three. And here it is, you know.
Tacey Ann Rosolowski, PhD Tell me about how having cancer changed your perceptions of the institution, perhaps of the disease.
Oliver Bogler, PhD Yeah. No, it’s interesting, particularly, I mean, I spent my professional time, up until quite recently, in the labs, basically, so I knew MD Anderson from that side. Now, in the last several years since joining the GAP team and then Academic Affairs, I’ve worked with a lot of faculty and other people across the institution. But this was really a completely different aspect to the institution from what I’d seen before, and it was fascinating. I mean, part of me, as I was going through this, was sort of observing this. You know, it’s an amazing place. I mean, as a patient, it’s an amazing place, and the clinical teams are outstanding. You are very well taken care of. And people didn’t always know that I worked here. I think maybe sometimes they did, but, yeah, I think the care is excellent. You know, you see things from a different perspective. You have different experiences when you’re the patient.
But I’d say I also watched my medical record. I don’t have access to ClinicStation or anything, but through the MyMDAnderson portal where they give you access, essentially, to your medical record on a time-delay basis, I read all my clinical reports there. It’s amazing how many people are involved in your care. Of course, you see your treating physician, you see your oncologist all the time. You see your surgeon, your radiation oncologist, and clinical teams around, but then there’s all these folks behind the scenes who are doing your diagnosis and reading your images and so on, and it’s amazing how many people are involved.
So, yeah, it certainly opened up a new avenue for me, a new view of the institution, and I can say only positive things about my experiences. I mean, people do talk about delays and waitings and things like waiting. I have to say that maybe I just got lucky, or maybe—I don’t think I got special treatment, but I had very few experiences where that was really an issue. And, yeah, it was interesting. I mean, it’s an amazing place. The energy in the patient areas, to me, was just interesting and sustaining, I have to say. It was not—I didn’t feel sad and I didn’t feel sort of—you know, I felt like there was a lot of can-do attitude, a lot of optimism.
So did it change my attitude of disease? I think I regret having done brain tumor research. I obviously was working on the wrong cancer. (laughter) Too late for a career change now, but, oh, well. No, I mean, I think the biggest thing for me is it does change your life. I think that’s a common observation.
Tacey Ann Rosolowski, PhD How did it change your life?
Oliver Bogler, PhD Well, so first of all, I got to know a lot of people who had cancer, and what’s interesting is that, of course, in an institution the size of ours, there’s many people going through cancer treatment all the time, many of our faculty or employees, so I met quite a few people who were going through it. We would sort of self-identify with each other and have a conversation, “How are you doing?” “How are you doing?” This kind of thing. And it builds a connectivity. That builds a connectivity to people. I also feel more connected to the faculty members, my colleagues who treated me. I think you naturally form some sort of connection. Those people are very important in your life.
In terms of how it changed my life, I think it just—you know, it changes your perspective on your own mortality, very clearly. It’s a major wakeup call. I kind of feel like we had our cage rattled pretty well when Irene went through this five, six, or seven years ago, but we had that repeated. For me, it’s meant that I try and be more thoughtful about things. I try not to defer things that I think are important. I feel I need to think about every day as being meaningful.
I mean, you know, there’s very little data for people in my position. We don’t really know what to expect in terms of long-term survival. So there’s very good data for five years for women. There’s pretty good data at ten years for women. There’s really no data for men in other case. We’re pretty similar to [unclear]. There was, I think, a study that Dr. Giordano was a co-author on, if I remember, from L.A. where they had a registry with three or four hundred patients, maybe as many as six hundred, I forget now, but not very many. And they had followed them, and, yeah, sure enough, when corrected for age and stage, the men did pretty much as well as the women.
The problem is that the reality is that most men, the median age of diagnosis for my disease is sixty-six. So I’m twenty years younger than the median age. So, you know, if you tell someone who is sixty-six they’ve got a good ten years, maybe that’s pretty—maybe that satisfies them. When you’re telling someone who’s forty-six, it’s a little less exciting. So I’m pretty confident I’ve got ten years, but do I have twenty or even thirty? I don’t know. Now I know a lot of people with breast cancer, and I hear through social media or other channels of people that have no disease for ten, fifteen, sometimes as much as twenty years, and then the cancer comes back. And, of course, when it comes back, it’s evaded the hormone therapy that you’re taking, and typically it’s metastatic, right?
So if I’m fifty, then I’m sixty-one, right? So I’m still saving for retirement, but sometimes I wonder why. (laughter) Seriously. I mean seriously, because—you know. Actually, retiring has always been part of my life plan. I’m not one of the people who plans to die at their desk. But now I wonder. I wonder if that’ll be the case. So it’s changed me a little bit from that side. And that may sound very pessimistic. It’s actually in some ways empowering, because I try hard not to defer things, and as I said, we’re taking more interesting vacation with the kids. We’re trying to—you know. Irene and I are both very much in tune and in concordance here. We’re focused on making sure our children get a good start in life. Our children are eleven and twelve now. We both would love to see them through college and into adulthood and make sure that they have an economically sound transition through those challenging years and come out with a good start in life. Beyond that, I think you don’t know. I mean, some people—I may be truly cured and I may never see cancer again, but, you know, that’s not how I think about it. I don’t think that’s likely.
Tacey Ann Rosolowski, PhD If this is too personal, just let me know. I was curious how it was in terms of your connection with your wife. I mean, you said you’re very much in tune. Has having, sharing cancer, how has that affected your relationship?
Oliver Bogler, PhD Yeah, it’s been, on the whole, positive. I mean, I think when you go through cancer, you go through a shift, and I don’t think even your life partner necessarily completes that shift with you, and so, yeah, now that we’ve both gone through it, I think there’s that sort of fundamental we don’t need to explain that to each other.
I’ve certainly connected with people. I’m not a support group kind of person, but I’ve connected with some people through social media and some other projects, and I find one of the things that draws me to that is that’s a community of people where I don’t need to explain myself. Those people understand it. Their shoes are not so different than mine. And the same thing when I was talking to colleagues that were going through a cancer journey at the same time, “Yeah, I get it. You don’t have to explain it.” So that’s the same with Irene and me now. I think it’s just formed a solidity there, you know. And we both saw each other go through it, and I think it’s been, on the whole, a positive. If I didn’t get everything about what she was feeling and thinking at the time, I think I get it more so now.
Tacey Ann Rosolowski, PhD Does she share some of your vision of what the future might hold when she looks at her own cancer? I mean, are you on that wavelength too?
Oliver Bogler, PhD I think so, yeah. Yeah, I think so. I think I’m actually the optimist in the family. (laughter) I know I didn’t sound like it just a minute ago. No, but I am. She tends to be more pessimistic. Yeah, I think we both know what the possibilities are, and so we’re focused on different things—not on different things. We’re trying to come to terms with that, and I think you sort of never really do. There’s always that waiting-for-the-other-show-to-drop kind of feeling. Irene is a few years ahead of me, as I mentioned, so she gets anxious when it’s time for checkups and scans and things like that. I mean, I think we both do.
Cancer robs you of your innocence. There’s no such thing as a cough that isn’t a lung met potentially, right? I mean, you can’t banish those thoughts. You may not credit them, but there isn’t an ache that isn’t a bone met. Do you know what I mean? It’s like there’s always that other theory, right? There’s, oh, it could just be that I have a cough, you know. There’s one going around. But it could not be. Of course, that’s not so different from the thoughts that I was thinking before I actually went to the doctor in the first place, right? I was also trying to sort of, “Is it? No, it can’t be,” sort of thing. So what I learned is I don’t trust my instincts anymore. I don’t have any instincts. So if I cough, if it lasts more than three or four days, then I would go and see a doctor. I see doctors all the time now. (laughs)
I had a spot on my lung which they followed for two years, so every four months I was getting a chest CT. So I feel they’ve looked at me very carefully and very thoroughly, and the care is outstanding, as I’ve said, so I feel in good hands. But, yeah, I mean, it’s sort of you know you’re walking on thin ice and you know that any moment now it could break through. So you try and prepare for that. You try and do today what you can do now.
Irene also works at MD Anderson. She teaches in the School of Health Professions. And we both feel that working at this institution gives our life tremendous meaning, and so every day I feel, even if I don’t do anything except go to work and go home, I’ve made some contribution. And I realize I don’t treat patients and I don’t do research anymore. I try to do my best to support the people who do. That’s how I see my mission, my personal mission. And that’s meaningful. I’ll leave others to tell you whether I do a good job or not, but that’s why I come to work every day.
And then I also do some advocacy. I’ve been talking about it. I get invited a few times a year to speak about it. People find it fascinating. First of all, men with breast cancer are still a rarity, and that’s, surprisingly enough, an under-aware area. And then the coincidence with Irene, of course, that adds a little sort of interesting dimension to it.
I’m currently working with—I’m very proud of this—the group called The Scar Project, which is that thing on the wall there. So that’s actually a work by a photographer called David Jay, who has been photographing young women with breast cancer for over a decade now, I’d say. He started photographing men. So that over there is my picture in The New York Times.
Tacey Ann Rosolowski, PhD Wow.
Photo by David Jay, from New York Times article,
“When Men Get Breast Cancer,” 25 February 2014.
Oliver Bogler, PhD In February of this year, actually, they picked up the story, so that was actually while I was doing my radiation therapy. So I’ve checked it off my bucket list appearing topless in The New York Times. (laughter) You won’t find it on my CV, I promise.
Tacey Ann Rosolowski, PhD I always think people should have an alternative CV. (laughter)
Oliver Bogler, PhD Yes. That would go on the alternative. No, I’m proud of it. I mean, I have to tell you that I’m an introvert, and seeing myself like that—very soon after that picture, when I was able to, I grew a beard and changed my glasses. So I was like putting on a Groucho Marx disguise.
But this work is interesting, and now—I was in New York a couple weeks ago—there’s a documentary being filmed about this work, actually by a filmmaker who did an original documentary about the women’s project a few years ago. She did a movie called Baring It All. It won an Emmy. It was quite an interesting piece. And now she’s filming men and what David’s doing with the men. And actually, David’s now photographing all kinds of people. It’s very interesting. His work has really blossomed. He’s actually a fashion photographer. That’s his day job. But he’s now photographing soldiers and traumatized kids and really interesting stuff. It’s really about humanity, and so I’m very honored to be part of that and the film that they’re making. Hopefully that will succeed. So these are new things for me. I’m also doing a little art myself, which I won’t talk about any more than to mention it.
Tacey Ann Rosolowski, PhD Why were you doing that? I mean [unclear].
Oliver Bogler, PhD The same reason I blogged about my cancer. It’s self-therapy. I mean, let’s be honest, I think that’s what it is for me. So there are things that I can’t say, even that I won’t say on a blog. I mean, I blogged about my cancer journey and I blogged about the science behind it, and I found that very—the ability to communicate about it, I found that a value to me and hopefully to some people. But I’m very conscious of the fact that I’m a professional in the cancer world, and there’s certain things that I can’t say or won’t say, and I’m talking about things about dealing emotionally with the issues. That’s all I mean by it.
So a key moment for me was we brought The Scar Project to Houston, October of 2013, and it was here for about two weeks in a gallery and so on. And I’d seen David’s work, of course, online, and he has a book that I have and that I’d seen. And I have to tell you, when I saw the images in the gallery, the emotional impact was surprising to me, because I was familiar with the images, I had seen them, but when you see them in a large format in a sort of private, contemplative space, the impact was just huge. That was October 2013, so I had been finished with my treatment for several months, but it shook loose—so I was feeling like I was coming to the resolution part of my sort of immediate cancer journey, but the emotions it shook loose, that was pretty interesting. I realized at that point there was still a lot of stuff that I hadn’t really worked through, and it just sort of rattled me, I guess, in a way, because these are all pictures of young women who—and it’s just a presence, their presence. I mean, David’s images, to me, they’re pretty amazing, and you feel, like, this connection. You feel sort of—not pain, but you feel like, I don’t know, just their humanity and stuff.
So I guess that encouraged me to try and find a valve for it. The first thing I did was this thing called Tumor in a Box, which is a—I’m fiddling with the electronics, but, anyway, I wanted to put my tumor into a box and sort of talk about my story, so that’s the kind of thing I’m doing now.
Tacey Ann Rosolowski, PhD Interesting.
Oliver Bogler, PhD And as I said, anyway, that’s enough already. That’s far too much already. (laughs)
Tacey Ann Rosolowski, PhD Well, I just, you know, as confirmation or validation, I was doing some work on breast cancer self-portraiture in the early nineties. I don’t know if you remember Matuschka’s famous image on the cover of The New York Times Magazine. I guess it as 1993. And I had a [unclear] family member who had died of breast cancer just shortly before that, and was very motivated, and got to do a lot of research and interview some women who were doing breast cancer self-portraiture. I mean, so many of them had never done any kind of artistic work before, but they suddenly felt, I mean, kind of similarly to you, that there were thoughts and feelings that really couldn’t be articulated in verbal terms, but somehow there was this other outlet which was suddenly present to them and which really not only was therapeutic, but had a real impact for other people. Some of these images were shared, and whether or not they became famous like Matuschka’s did, there was suddenly a not-so-underground movement among certainly women at that time who were beginning to say, “Hey, we have a right to photograph ourselves and appear visually in this culture which is so much about perfection and beauty, and suddenly show ourselves as we truly are.” So I think in some ways it’s a natural next step, particularly for a visual thinker. (laughter)
Oliver Bogler, PhD Okay, there you go.
Tacey Ann Rosolowski, PhD Yeah, it makes a lot of sense to me, and, you know, it also takes some courage to kind of step outside of the box and do something a little bit different.
Oliver Bogler, PhD I have to say I really do it for myself, you know.
Tacey Ann Rosolowski, PhD Sure.
Oliver Bogler, PhD I mean, I think that’s probably what most artists do, right? They probably do most of these things for themselves.
Tacey Ann Rosolowski, PhD Yeah, it starts with that compulsion, something you can’t ignore.
Oliver Bogler, PhD Exactly.
Tacey Ann Rosolowski, PhD A need you can’t ignore.
I wanted to ask you, though, a little bit more, and this is kind of my last question unless you have additional things you want to raise, was really about the blog, because you spent a lot of time on that. Tell me why you began and why you began using social media.
Oliver Bogler, PhD Yeah, I think the reason—I mean, I concluded, first of all, that working in a Cancer Center, I wasn’t going to keep this quiet. I mean, people were going to see me with no hair and know what that means. Not that I anticipated people would have intruded, but I just felt, “Okay.” And then I guess I felt that given the fact that the male disease is still surprisingly—there’s still opportunities to raise awareness, I felt sort of compelled or felt an opportunity presented itself.
And I have to say, my journey, I’m not really that focused on awareness itself. There’s quite a few people out there doing awareness work. And I think the biggest challenge with male breast cancer awareness is we stand in the shadow of the world of pink, and I want to give all full credit to the people who’ve pioneered cancer awareness with breast cancer, and, of course, some really fantastic things happen. The fact that we can talk about our cancer now is built on the fact that in the sixties and seventies, women largely started talking about their breast cancers and so on. So hats off to those people. Hats off to the Komen Foundation and all their colleagues who’ve really advocated for cancer research and raised monies and awareness. This is all fantastic.
For me, personally, it’s a little unfortunate, as a result, breast cancer was branded as a gender-, as a sex-specific cancer. It’s not a sex-specific cancer. Right, it’s a 99:1, and as a middle-aged white guy complaining about not being included, that’s a tough challenge. (laughs) Because, you know, we’re not usually seen as the people who need help. So there’s a little bit of that.
Frankly, that manifested itself mainly when in October, for example, when I see the NFL decked out in pink, which I think is wonderful and supportive, I can’t help but get tremendously frustrated that they won’t use that amazing opportunity in a stadium of whatever it is, 40,000 fans, not all of them men, but many of them are men, not to just say, “Hey, we’re all wearing pink today because of breast cancer. Let’s take care of the women. Let’s do everything, you know. But, hey, also, by the way, did you know that you could get this?” Right? Wow. What an opportunity. And sometimes I think that David’s images of some of the old crusty guys he’s photographed would do really well in a venue like that. It shouldn’t be the core of the message; it should be some of the message.
Similarly, so awareness is a little bit of what I do, but as I got more into it, I guess I fundamentally blogged, again, for self-therapy, communicate about it, tell my story. I found that my perspective as a scientist going through this, I could talk about things that I didn’t see in most blogs, which is, you know, what’s the biology of cancer, why do we give this chemotherapy, how does it work, what does it do. These kinds of things, I think, were opportunities, and I enjoyed that.
But then I also got interested in the advocacy part, and I took a look at two issues, really, primarily. One was funding for research on male breast cancer, and the other was clinical trials. So in the first instance, I looked at how much the National Cancer Institute spends on breast cancer and how much compared to the incidence of the disease, and I found that if you graph one against the other and you draw a straight line through it, breast cancer gets about $200 million more a year from the NCI than you would think, based purely on its incidence. And I think that’s a credit to the advocacy community and it’s a credit to the fact that people get funded in the world of breast cancer, so they commit to it from a career point of view so you have more people working on breast cancer and so on. That’s why we’ve made some advances, and that’s awesome.
Six hundred million a year, 1 percent of the patients are men, I advocate that we give $6 million a year to male breast cancer research, and with $6 million a year, you could fund half a dozen to a dozen RO1-type grants, and you could do some real basic biology on the male disease and we could learn something about it. The only grants I was able to find in the databases I looked in were grants that were sort of epidemiology of rare-cancer-type grants, so people who were exposed to the atomic tests in the fifties, what kind of cancers do they have? Here’s a list of three hundred rare cancers, and male breast cancer’s stuck in there.
So there’s no real fundamental biology on the disease, and I get that the treatment I received, which was modeled on what women get, was effective and I’m doing fine and it’s great, but it’s a hormone-drive cancer, okay? And one of the differences between men and women is the hormones, right? So until we take a look, I don’t know if we’re missing anything, and I think that should be done. So I advocate for 1 percent of the research funds going to male disease.
The other issue is clinical trials. So when you look at clinicaltrials-dot-gov and you look at the breast cancer trials, men are eligible for about a third of them, which if you think about the fact that we’re 1 percent, that’s pretty awesome. But if you think about it as an equal access issue, then it’s a little disappointing. And there are clearly some trials for which men are not a good fit. I mean, there’s trials for types of breast cancer that men really rarely get, like triple negative or these kinds of things, inflammatory. Those are very, very rare in men. There’s trials on surgery, reconstruction, things that men don’t do. Fair enough, all that stuff, but that’s not two-thirds of the trials.
So what I’ve discovered sort of anecdotally is that when I talk to clinical trialists in this space, the reality is that they build today’s trial on yesterday’s template, and very often when I’ve said, “Hey, have you considered including men?” the answer I’ve got is, “Huh. No, I didn’t think of that. But, yeah, makes sense. Why not? Of course, if the disease criteria fit, right?” So most men are ER-, PR-positive carcinomas, most women, too, and so most trials or many trials are on that. So rarely do I get the response of, “Well, I’m not going to do that,” or, “That doesn’t meet my interests,” or something like that. I do get those occasionally.
So I think, again, the way I think about it is if you did a trial and you decided to exclude a minority, you would have to give a biological reason for it, an ethical justification of that. So I think that if it’s a disease fit and you decide not to include men, you should simply be asked to include in your trial a brief statement about why you’re not including men, right? And if there’s a good reason, of course that’s fine, but it should at least be surfaced and looked at.
So I’ll get off my soapbox now. So those are some of the things I’ve blogged about. I’ve also written about them in a little piece for the Breast Disease Quarterly, so I’m certainly out there with that message, and I often talk about it. When asked to talk about anything, I’ll talk about this. (laughs)
Tacey Ann Rosolowski, PhD
Why did you choose to use social media as opposed to other outlets?
Oliver Bogler, PhD Yeah, social media, I think, came naturally to me. I think it’s a comfortable distance. It’s interesting, I’m reading this book called Quiet at the moment, which maybe you’ve read it. I realize it’s been out there for a while and people have been recommending it. Finally, I’m reading it. And it talks about social media and says that some people who are introverts like social media because it’s a comfortable, safe—it’s a nice way to interact with people but here they are on the screen, and you can close the computer and you’re back in your personal space. So maybe there’s an element of that in there.
I like technology. I think I’m a pretty good person on the computer. I take to technology easily, so I find it a nice way to connect. It’s synchronous, it has a good reach, and blogging, to me, came naturally. I used to write a diary when I was kid and going through some—you know, growing up. (laughs) Let’s just leave it there. I had a very nice childhood, I’m not trying to say that, but just times when you go through turmoil, and I find writing therap
Recommended Citation
Rosolowksi, Tacey A. PhD and Bogler, Oliver PhD, "Chapter 19: A Survivor of Male Breast Cancer" (2014). Interview Chapters. 1584.
https://openworks.mdanderson.org/mchv_interviewchapters/1584
Conditions Governing Access
Open
