A Man With Breast Cancer, Dr Bogler, Entered 'World of Pink'
Published 16 Feb 2016
Almost immediately after being diagnosed with breast cancer in September 2012, Oliver Bogler, PhD, who works at the University of Texas M.D. Anderson Cancer Center in Houston, began writing the Entering a World of Pink blog.
Even though he now has no evidence of disease, Dr Bogler continues to write the blog and it continues to be noticed. Earlier this week, National Public Radio's popular Morning Edition aired a story about him and the blog.
Given the blog's title, it might be a good guess to suppose that the writing is about a man who is a stranger in a strange world, moving cautiously amid a disease that overwhelmingly occurs in women.
But it turns out that would be a bad guess.
From the moment of his diagnosis, Dr Bogler deep dives — "enter" is too mild a word — into the world of breast cancer and surfaces not just as a blogger, but as an advocate, community member, shirtless model, conceptual artist, and media subject. In each of these roles, he seeks to change the status of male breast cancer, especially its neglected research funding.
This all took root in the 9 months after his diagnosis, while he underwent chemotherapy, surgery, and radiation and maintained his work at M.D. Anderson.
"During the first year or so, I focused the blog on my personal cancer journey and wrote quite often," Dr Bogler told Medscape Medical News in an email.
Even though he is a laboratory scientist who specializes in brain tumors and is a professor of neurosurgery, Dr Bogler was intimately acquainted with breast cancer before his diagnosis. His wife, Irene, who is a cancer researcher at M.D. Anderson, had been diagnosed with breast cancer in 2007.
The story about a man and wife both diagnosed with stage II breast cancer at 46 years of age was covered by a local Houston television station and then picked up by news outlets across the globe. That coverage included a report in the Daily Mail in the United Kingdom, which is the Internet's most trafficked news site.
Dr Bogler's diagnosis came just weeks after his wife was declared disease-free, so he knew about breast cancer. But he was quickly reminded that relatively little is known about the disease in men.
In October 2012, Dr Bogler and his treatment team decided on 6 months of neoadjuvant chemotherapy in the hope of stopping or reversing tumor growth, even though it is not clear whether long-term outcomes are better when surgery follows chemotherapy.
This strategy comes from studies of women, Dr Bogler reported.
"Of course, for male breast cancer there is no data at all, because it is rare, and so we are assuming, as most do, that the findings in breast cancer in women is transferable," he writes.
On October 8, Dr Bogler joined the breast cancer community for the first time and participated in a breast cancer social media tweetup. The #bcsm tweetup event, in which tweeters meet in person, takes place every Monday at 8 pm local time so that "people get together for a conversation," he writes.
In the next half year, his ongoing participation in the world of social media resulted in his blog being cited by Elizabeth MacKenzie, an established breast cancer blogger who writes the My Eyes Are Up Here blog. "As a guy in the breast cancer world, these welcomes and connections are very much appreciated," Dr Bogler writes.
In 2104, he was invited to participate in a discussion on the use of social media to increase participation in clinical trials at the annual meeting of the American Society of Clinical Oncology, along with two oncologists with a highly visible Twitter presence — Robert Miller (@rsm2800) and Mike Thompson (@mtmdphd).
Participation in research is the subject of one his earliest blog posts. "Get the best treatment for yourself, today. Participate in research for your kids, tomorrow," he writes, and mentions that he is part of two biomarker registry trials.
Cancer research is the repeated focus of Dr Bogler's writing, which is fitting for someone who is senior vice president of academic affairs at M.D. Anderson.
He regularly scans journals and posts summaries of new studies on male breast cancer in the Paper Report section of his blog.
While recovering from his modified radical mastectomy, he explored the world of breast cancer research funding to learn how male disease fared.
Using a grants database, he determined that there were 9491 breast cancer research grants from private and public funders in the United States from 2009 to early 2013, which totaled $4.8 billion.
However, Dr Bolger noticed there were only five hits on the search term "male breast cancer" in the database. And "none of these grants were focused exclusively on this form of the disease," he writes.
This prompted Dr Bogler to point out that about 1% of all breast cancers occur in men, and to call for the major agencies in the United States that fund breast cancer research (National Institutes of Health and Susan G. Komen for the Cure) to provide more money for projects that include men. "1% of funding would be $14M per year, and represent a 20x increase. Please consider it," he writes.
There are "two big challenges regarding research for male breast cancer," Dr Bogler told Medscape Medical News.
"One is lack of funding for fundamental explorations of the biology of male breast cancer, compared with female breast cancer," he said. This research would determine whether treating men with the "same approach as women really gives the best possible outcome."
The second challenge is reduced access to clinical trials. "Men are excluded from two-thirds of clinical trials on breast cancer based on sex alone, when perhaps in many instances they would be eligible based on their disease," he noted. He argues that men should be included in trials unless there are "sound reasons" for exclusion.
Dr Bogler first discovered the extent of this exclusion in May 2013, after his surgery. He ran an analysis of the clinicaltrials.gov website and discovered that of the 4826 breast cancer trials listed, only 32% allowed the enrollment of both men and women. The rest were women-only.
At about this time, Dr Bogler participated in the SCAR Project: Male Breast Cancer, which is a companion to the well-known images of women with surgery scars by fashion photographer David Jay. A on the project, published in the New York Times, included comments from Dr Bogler and an image of him posing naked from the waist up. He has described the photos as "unflinching."
In the spring of 2013, Dr Bogler was joined by M.D. Anderson breast cancer expert Sharon Giordano, MD, for a podcast about male breast cancer. By this point, he had talked, blogged, posed, and broadcasted about male breast cancer, and yet his treatment was still not complete.
As if these mediums were not enough, in May 2013, after his surgery, Dr Bogler created an art installation called Tumor in a Box for the annual faculty art exhibition at M.D. Anderson. Then he made a video of the project, which he posted online.
In June 2013, Dr Bogler finished his radiotherapy and his cancer treatment was finally complete. But he still needs to take tamoxifen for 5 years. "My tumor, like most male breast cancer, is highly ER/PR positive, and so the good news (yay! good news!) is that it should respond really well to tamoxifen. With 95% positivity for the hormone receptors, this should work well," he writes.
Soon after Dr Bogler and his wife told their two school-aged children about his diagnosis, his son said: "Dad, it's lucky you were diagnosed in breast cancer awareness month." Dr Bogler explains to his readers outside the United States "that October is Breast Cancer Awareness Month here, and there is pink everywhere."
We, as patients and scientists, are riding a big wave towards better answers for breast cancer and that wave is largely pink.
Dr Bogler says that pink is not his color, personally: "Believe me, as a guy with breast cancer, pink doesn't speak to me." But he appreciates and salutes pink as a phenomenon.
"I acknowledge a great debt to the movement. We, as patients and scientists, are riding a big wave of awareness, cultural acceptance, and funding towards better answers for breast cancer, and all cancer, and that wave is largely pink," he writes.
His take on pink is nuanced.
"I don't deny the downside. The transition from awareness to complacency is often swift. The feeling that one can accessorize oneself out of the problem is near at hand. But I would say we need to tweak the pink message, not eliminate the pink (as if we could...). In my opinion, the only answer to cancer is prevention and research. If the pink is tied to prevention and research, and this is explicit, then it is good," he explains.
What do you think about this? Share your thoughts and experiences!!!
What do you think about this? Share your thoughts and experiences!!!
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