As many of you know, this is our 3rd year cycling in support of my brother Evan. Since I cannot tell his story as well as he can, I am including his words in text below and in video.
Please join me in celebrating his courage and fundraising to help ensure future breakthroughs and drugs for those battling rare cancers.
Our efforts are inter-state this year — also check out Evan's Energy NYC!
In October 2016, I learned that my leiomyosarcoma, which had originally been confined to my left ankle, had spread to my lungs. Since then I’ve had surgery, radiotherapy, and received doxorubicin and olaratumab (Lartruvo). My hope is that this combination approach to treatment will allow me to live a normal life. I want to grow old with my wife and see my young children graduate high school and get married.
At the start of November 2015, I was finally able to relax after a stressful six months during which my second child was born, we moved, I started a new job, and I took and passed my diagnostic radiology board certification exams. I’ve always been an active person, so I joined a gym and started running again.
That was when the intermittent pain I had been experiencing in my left ankle for about a year began to get worse. I put it down to the running and the fact that I was getting older; I was 41. X-rays ordered 6 months earlier by a podiatrist had shown nothing unusual but after the pain worsened I had an MRI. It showed a 5-centimeter mass in my left ankle. A biopsy revealed that the mass was leiomyosarcoma, a rare type of cancer arising in smooth muscle cells.
My reaction to the diagnosis would probably surprise most people. I wasn’t shocked; I just wanted a plan to deal with it. Through my job as a radiologist who specializes in breast imaging, I’ve diagnosed hundreds of women with breast cancer, so I’ve seen that cancer can strike anyone at any time. Not many people expect cancer but it happens, and now it had happened to me.
The first part of my plan was to find a specialist. The orthopedic oncologist I saw at Memorial Sloan Kettering Cancer Center recommended that I have a below the knee amputation of my left leg. Before I went ahead with such a life-changing surgery, however, I obtained a second opinion and had a second biopsy, this time an open surgery biopsy.
Once the diagnosis was confirmed, I was at peace with the decision to amputate. The surgery was February 2, 2016.
I was back in the gym shortly after the surgery, even before I had my prosthetic leg fitted in March 2016. Exercise really helps me. When I exercise, I don’t feel like a cancer patient; I feel in charge of my body and that is very important to my mental well-being. Completing a sprint triathlon just seven months and one day after the amputation was a huge achievement for me, especially as just a month later, in October 2016, a follow-up surveillance CT scan showed a growing nodule in my right lung, the most common site for leiomyosarcoma metastases.
During minimally invasive surgery on the right lung, the surgeon removed eight nodules, seven of which turned out to be metastatic disease. So, I started eight cycles of the chemotherapeutic doxorubicin and a newly FDA-approved drug called olaratumab. We know this has stabilized my disease because the nodules in my left lung and the nodule in my hip have stayed the same size and no new nodules have appeared.
We are hoping that the doxorubicin and olaratumab have also killed any remaining leiomyosarcoma cells that are not visible on scans. To be sure, I’ll be continuing with olaratumab for at least six months longer. Because we are going for a cure, I’ve also just completed six radiotherapy treatments to eliminate the nodule in my hip and I’m scheduled for open surgery to remove the nodules in my left lung at the end of July 2017.
My hope is that the cancer will not come back and that I will have a normal life expectancy for an otherwise healthy 43-year-old. I want to keep enjoying life and doing all the normal things that a family does.
I also hope that if the cancer does come back, the research currently being done will have resulted in a clinical tool that can help me. Before I was a radiologist, I was a research chemist, so I know how long it takes before basic research can change lives. The platelet-derived growth factor receptor [PDGFR], which is the target of olaratumab, first had to be discovered through basic research before olaratumab could be developed. This is why funding for basic research is so important; it gives patients hope of a longer survival.