Part of educated awareness during Breast Cancer Awareness Month is learning as much as possible about all aspects of this disease. Advocacy cannot be complete if we do not tell the whole story and part of the whole story is that male breast cancer can and does happen. Being a BRCA2+ mother of two sons (and a daughter too), this topic takes on even more significance in my family. But of course as we all know, breast cancer can happen in any family.
This is why I’m pleased to feature a guest post today by Oliver Bogler, a man whose life has been impacted by breast cancer not once, but twice. Thank you for sharing your story, Oliver, and thank you for your advocacy as well.
Cancer Changes Everything
I passed the one year anniversary of my diagnosis of stage III breast cancer in mid-September and after one year, feel I have some perspective.
The first thing I will say is that cancer changes pretty much everything in your life.
While the memories of the chemo infusions, the surgical drains and the daily visits to radiation are already rapidly receding, cancer is still a daily presence. Happily, many of the regular patterns of life have reasserted themselves, bringing the daily joys and challenges of a busy work and family life, but it’s not a return to the way it was before.
Being a cancer survivor (which I can’t help remarking, all people with this diagnosis are right up to the moment when they’re not) changes so much in your mental landscape. Let’s be honest, front and center for those who achieve “no evidence of disease”, is the fear of recurrence – the fear of dying from your cancer. While I’m pretty successful at keeping this at bay most of the time, it’s instantly present when the right stimulus presents itself.
At the moment the strongest trigger for me is my stepfather’s prolonged and heroic fight with his prostate cancer. He has been dealing with it for over 12 years and has kept his optimism and determination throughout. He is now facing mets with few treatment options still open to him. I think of him all the time. And when I think of him, I think of me too.
There are many other triggers, as cancer has become interwoven into our popular culture with cancer patients dotting TV and movie entertainment. And then there is the fact that there is no such thing as a cough that doesn’t make you wonder about lung mets, or a headache that better go away soon or it’s bound to be a brain met. Sometimes I can sit back and watch the rational side of my brain fight with the fear. And of course it wins; the cough goes away as usual and the headache responds to aspirin. Of course it does.
But what if one day it doesn’t?
Alongside the fear is the feeling that time is precious. You have been given a pretty strong notice that your days are numbered, and that you need to make the best use of them that you can. This can be a very positive motivation. It instills a sense of urgency, of not waiting too long to do things you want to do. It can also be an added pressure.
What would that best use of your time be?
I’m lucky in that I have worked in cancer research my whole life and presently work at the largest academic cancer center in the US, MD Anderson Cancer Center in Houston. My current role is to support the academic mission of the center – the research and education that will lead to better answers against cancer. I feel very privileged to be a part of the near 20,000 people who go to work on this problem every day at our one institution. While my work presents daily challenges, I feel that I understand them and by applying myself, learning and working with others I can make a contribution. This makes me feel I am making excellent use of my work time.
As a man with breast cancer, I’m a bit of a rarity – only 1% of breast cancer patients are men and there are about 2,200 cases a year in the US. Although breast cancer in men is relatively rare, it can and does happen. Therefore, I feel another good use of my time is raising awareness about the risk of breast cancer for men.
Since most men are unaware of the possibility of getting this cancer, there is a need for raising awareness. Even simple things like routine self-exams are not done and symptoms are often misunderstood or ignored. Also, as I have written at length about on my blog, Entering A World of Pink – a male breast cancer blog, there is essentially no research on the biology of the male disease, leaving doctors no choice but to treat us as they do women with this disease. While this has significant merit, and many men do well with this approach, the possibility that there are medically relevant differences needs to be explored. Personalized medicine, you know. And then many clinical trials for breast cancer exclude men, often for no good reason.
So I have become an advocate.
I am blogging, tweeting and asking awkward questions at scientific meetings. I am part of a team bringing David Jay’s outstanding SCAR Project, to Houston this October and David is now also photographing men (see photo). I am participating in film documentaries about male breast cancer. I have had a poster presentation accepted at this year’s San Antonio Breast Cancer Symposium on this issue, in the advocacy section. I am beginning to speak publicly about the issue anywhere people will have me. In this work I feel I am out there without a safety net and am pushing the limits of my limited extraversion. But I feel a need to do it. Whether it will amount to anything is still uncertain, but I do feel that it is a good use of my time.
The hardest “best use of my time” by far is trying to be a role model for my kids and engaging with the family. Here I fear that I fail more often, as sometimes my anger and frustration get the better of me. Then there are times when I know I should spend time with the kids but feel the need to be alone, to replenish my limited energy and optimism. My kids are still young – our son is 11 and our daughter just turned 10 – so I am very aware they are watching me go through this. I often wonder what they think of how I am doing.
My wife, who is also a breast cancer survivor and five years ahead of me, has always been the foundation for the family and still is. She gets it all, and not needing to explain is probably the biggest gift that this double cancer burden has given us. She has led me through this past year and if I can continue to follow her example, I know I can make the best use of my time in this area too.
If you have any questions or comments about male breast cancer, please let Oliver know with a comment below.
Have you ever known anyone with male breast cancer?
About Oliver Bogler
Dr. Bogler studied Natural Sciences at Cambridge University graduating in 1988 and went on to complete his PhD in at the Ludwig Institute for Cancer Research, University College Branch in London. Following a post-doc at the Salk Institute in Developmental Neurobiology, he rejoined the Ludwig Institute at its San Diego Branch. His first faculty appointment was in the Departments of Anatomy and Neurosurgery at Virginia Commonwealth University in Richmond. In 2000 he moved to the Hermelin Brain Tumor Center, Henry Ford Hospital, Detroit and was promoted to Associate Professor in 2002. In 2005 Dr. Bogler joined the Department of Neurosurgery and the Brain Tumor Center at the UT MD Anderson Cancer Center as Director of Basic Research and was promoted to Professor in 2009. In July 2010 Dr. Bogler accepted the position of Vice President for Global Academic Programs where he manages academic relationships spanning over 30 Sister Institutions in 20 countries on behalf of MD Anderson. He was recently appointed Senior Vice President for Academic Affairs and now focuses on overseeing the 300 people organized into 16 departments in this division who deliver support for the more than 5,000 academic personnel at MD Anderson.