Tell us about your breast cancer experience, including diagnosis and treatment
In 2012 I was diagnosed with stage III ductal carcinoma ER+/PR+, Her2-, at age 46 and underwent standard treatment at MD Anderson: first 6 months of chemotherapy (taxol followed by FAC), then mastectomy, then 6 weeks of radiation and now tamoxifen. I currently have no evidence of disease.
What are the most important things you learned as a patient?
That cancer changes your whole life, permanently and not all in a bad way. You recalibrate your priorities which can lead to seizing the moment more often than before.
What do you wish you had known?
Being a cancer biologist (I specialized in brain cancer research) I knew a lot about the biology of cancer, but as a basic scientist I did not know much about cancer therapy. I wish I had known more about some of the therapies I received. For example, my tumor did not respond to the first course of chemo which was 12 weeks of taxol (well, we stopped after 11 as it wasn’t working), but I have a persistent pronounced neuropathy in my feet, 2 years later from this drug. Could that have been prevented?
Where do you find support?
I found support online, in connecting with people who share the cancer diagnosis, including with the #bcsm community!
What is the most important advice you would give a new patient?
Actively engage in the management of your disease and learn as much about the cancer, the treatments and what to expect as you can.
What concerns you most about the future?
Since I was diagnosed at a relatively young age (46 vs the median for men with breast cancer which is 68) I worry about recurrence. To reach the life expectancy of people in the US I would have to remain cancer free for 32 years, which with stage III disease strikes me as statistically unlikely. I hope that new therapies will be available if I do have a recurrence. If I had to lay a bet, I would place it squarely on the new immunotherapy approaches that are being developed.
What advocacy work most interests you?
I am most interested in the issue that male breast cancer is not the focus of sufficient organized research. On my blog and elsewhere I have written about the fact that very little basic biology and not enough clinical research focuses on or includes men. In the US we spend less than $1M a year on anything related to male breast cancer, and $600M a year on breast cancer overall from the NCI alone. 1% of breast cancer patients are men – if we devoted 1% of the resources to researching this subtype that would increase the funding level 6 fold, to $6M and allow some great basic research that would reveal whether the male and female disease are in fact identical. Given that they are clinically managed in the identical way, this is an important question. Similarly, clinical trials access needs to improve: currently men are only eligible for 1/3rd of breast cancer clinical trials, when in many instances their cancers would fit the criteria.
Dr. Oliver Bogler is Senior Vice President of Academic Affairs and a Professor in the Department of Neurosurgery at the University of Texas MD Anderson Cancer Center, as well as Associate Dean at The University of Texas Graduate School of Biomedical Sciences. He was diagnosed with breast cancer in 2012 and has written extensively about his treatment as well as many aspects of breast cancer, specifically male breast cancer. You can find a wealth of information on his blog: Entering a World of Pink – A Male Breast Cancer Blog. Additional writings include Male Breast Cancer: Facts and Personal Perspective and Badge and Bracelet: The Use of Social Media From an Academic and Personal Perspective. Follow him on Twitter: @obogler
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