Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.
In December, 2002, I was a 50-year-old, hard working physician’s assistant and runner who collapsed after a run. After two days of testing at the hospital, my imaging studies revealed multiple malignant tumors that had spread into all quadrants of my liver. The disease was so extensive that it was extending out into my lungs.
“This is one of the rarest sarcomas in the world, and it’s unresponsive to all known chemotherapy,” my oncologist said. “You probably have three to six months.”
That was fourteen years ago.
Fighting for survival during the weeks following my diagnosis, I visited several hospitals, hoping for some good news. I still remember standing next to the transplant surgeon at a major medical center as he looked at my scans and tests. He said, “Your disease is so extensive throughout your liver and lungs, that there is no way we can offer you a transplant. I’m sorry.”
I went for more opinions. Another doctor told me, “You’re welcome to get those opinions, but I’m sure they’re going to tell you the exact same things I did.” This turned out to be the farthest thing from the truth. If I had listened to him and followed the advice of the first four or five cancer centers I visited, I would not be alive today. I learned from other oncologists that the type of sarcoma I had is often slow-growing, but may change, so I had much more time than he had told me. And there was a myriad of treatment options that he wasn’t aware of. In reality, these options, including a liver transplant, greatly benefitted me and increased my survival time.
My trip to another major cancer center (a four-and-a-half-week ordeal that drained my savings) offered me no hope, only the same palliative chemotherapy that was suggested at the teaching hospitals in the Midwest. Out of all of this hell, stress and turmoil, I did get one of the most important lessons that helped me in my survival, though it did not come from the cancer center — it came from a researcher who worked at the cancer center, who invited me to visit him at his home office. In order to keep myself alive, he said I would have to go beyond any standard of care and focus on three things:
1. Find the molecular makeup of my tumor and its microenvironment.
2. Use advanced biomarkers to guide my treatment.
3. Create three contingency plans to have on the table at all times.
After I left his office, I realized that I would have to rethink everything I was doing to survive! A number of my early treatments failed and landed me in the hospital. As part of my "Triad of Survival," I started searching for novel treatments based upon the tumor’s microenvironment, and pushed for their use. If my clinicians didn't approve, I found ones who did. There were new drugs, clinical trials and even foreign chemotherapy that was illegal in the United States. Some worked, and some did not, but I continued my quest. Additionally, I used blood and genetic biomarkers (such as VEGF / angiogenesis and inflammatory markers) to help doctors guide my treatment. A year after a liver transplant, my tumor returned. I went to Boston for a molecular profile of the tumor, a test that I had been told for years, (by my clinicians) that would be a waste of time and money.
After I got the results, I was put on a new drug targeting the tumor’s genetic pathway to stop tumor growth. There were three genetic abnormalities. I asked my team at the Cleveland Clinic to target the main one, and I've been good ever since. They took my research seriously.
The takeaway is personalized cancer care saves lives. If I had not researched my tumor, used biomarkers or built a triad of survival (contingency plans), I would not be alive today.
ABOUT MARK: Mark Roby is an integrative medicine specialist, certified physician assistant, naturopath, cancer strategist, author and speaker and cancer survivor. He is the co-founder of the Metro Detroit Center for Attitudinal Healing and author of the new book, “Lifelines to Cancer Survival: A New Approach to Personalized Care.” Visit his website at CancerStrategist.com.
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