Five years after my first battle with prostate cancer, I was recently diagnosed with another recurrence and it’s a rather aggressive form of the disease. I am incredibly confident in my oncology team (Dr. Rettig, Dr. Nichols, Dr. Garraway, and Dr. Shelton) who are providing me state-of-the-art care, partially because I advocate for my own treatments and know what is available both inside the VHA system versus what the private industry offers. Through my own journey, I have experienced the disparities that I mentioned in my previous letter firsthand, some of which are impacting my current care and adding to the stress and anxiety of my family. To see the strain on your loved ones while they watch is worse than any pain you must endure with any treatment.
Most recently, my PSA began to rise, and my team provided me with the latest and greatest imaging. I was only given this imaging because the West Los Angeles VHA just so happens to be doing a free clinical trial of Prostate-Specific Membrane Antigen (PSMA) imaging, the most thorough and detailed medical analysis of prostate cancer in the body. My prostate had already undergone extensive radiation therapy; had I not had access to this technology, this recurrence would not have been found. After that, a precise MRI Fusion Biopsy determined there was again active cancer in my prostate. These technologies, both of which were essential to my latest treatment, are only available at one facility in the entire VHA system. Veterans in America deserve access to this level of care.
Because of this finding I require a brachytherapy called High Dose Radiation (HDR). This specific treatment is not offered within the entire VHA system, but is offered at a number of public and private facilities throughout California. Unfortunately, few hospitals have contracted with the new Mission Act, which improves access to healthcare in VHA facilities. This is a continuing issue and needs immediate attention to bring qualified physicians — including radiation oncologists and other specialists — directly to the veterans who require their care. I am asking VHA leadership to support a significant education and communication effort to actively recruit these major hospital systems with incredible resources and capabilities to provide oncology and specialty treatments.
Currently, my drug treatments include Xtandi (androgen receptor inhibitor) and Lupron (androgen deprivation therapy). My oncologist had originally wanted to prescribe Erleada to me; however, due to acquisition issues and procurement of other medications, it was denied by the VHA pharmacy. It’s disgraceful that Veterans like me with aggressive forms of cancer don’t have access to these new medications that prolong lives and increase the quality of livelihood.
I founded the nonprofit organization Veterans Prostate Cancer Awareness, Inc. to assist in raising awareness about prostate cancer and Veterans education of the disease. Let me make a commitment to all of you reading this letter: I promise to continue to raise awareness around this disparity and will work to ensure that veterans are provided the best possible care for prostate cancer that is available in the world. The VHA now treats over 489,000 active cases of prostate cancer, over 16,000 metastatic cases, and almost 15,000 new cases each year; I will not be silent about this issue. I request that everyone considers how we can collectively communicate the resources Congress has made available through the Mission Act to better provide for the Cancer Care of Veterans.
ZERO is a resource for veterans wanting to understand the Mission Act and other information available to assist them in their prostate cancer journey. Go to zerocancer.org/veterans for more information.