Testimonies
Heartfelt stories from cancer survivors.
I’m Chris – on July 30, 2010, at 3:30 in the afternoon, I received the phone call that would change everything. My pathology report had come back positive for non-small cell lung cancer. Without ever smoking, I had suddenly become one of the approximately 225,000 people who would be diagnosed with lung cancer in a year. How could that happen?
Just a few months before, I was out on one of my typical after-work bike rides. This was just a quick 20-mile ride, 10 miles out and the 10 miles back home. On the way home, I had gotten an odd little cough. I passed it off as just being the result of springtime allergies. Over the next couple of months, the cough got bad enough that I finally went to see the doctor and was diagnosed with an upper respiratory infection. The antibiotics prescribed made things better, but the cough remained. Just a few weeks later, I was back at the doctor and x-rays showed pneumonia. X-rays at the follow-up visit a month later still showed pneumonia. A pulmonologist appointment was scheduled with more x-rays and a CT scan. The CT scan revealed the presence of a large tumor in my right lung. My journey into unknown territory had begun.
Three weeks later, I was at MD Anderson in Houston. A full battery of tests had been completed the week before, and we were now awaiting the results. All of the tests concluded that the cancer had already spread. The lymph nodes and my chest and abdomen were already impacted, and there was a brain tumor. I was officially classified as a Stage IV lung cancer patient. The odds of beating this monster were getting worse.
We decided that the best course would be to treat the brain tumor with Gamma Knife surgery and begin a targeted therapy for the lung cancer. The Gamma Knife was scheduled for the next week, and I began taking pills for the cancer. A month later we were back for follow-up appointments and to re-stage the lung cancer. The MRI showed that the Gamma Knife surgery was successful and that the brain tumor was dying. However, the lung tumor had grown and all of the genetic analysis had been unable to determine if I had a known mutation. We decided that I would begin standard chemotherapy for the lung cancer the next week. The next morning, I was to visit the brain surgeon who performed the Gamma Knife. I was not feeling well that morning and was my vitals were not looking good. They admitted me to the hospital for treatment of pneumonia.
When I was first diagnosed, I prayed that God would put the right people, in the right place, at the right time. I was feeling worse and was back in the hospital. The road I was on was getting rougher and rougher, but there in the midst of that, God had arranged a divine appointment. Saturday afternoon, the oncologist on call entered my room. He sat down and began to explain why I kept getting pneumonia and that we would need to modify my treatment plan. Performing chemo on a patient with post-obstructive pneumonia like he thought I had would be a train wreck. He had scheduled another test for Monday morning to confirm his diagnosis. On Sunday afternoon, the same doctor was in to check on me. He told us that he had reviewed all of my scans and tests and understood that all of my genetic testing had not identified a specific mutation. He went on to explain that in the past few years, there had been a new rare mutation, EML4-ALK, identified and that I fit the profile for the typical patient who would have this mutation. (Only 3-7% of all lung cancer patients have this mutation.) While cautioning that this was a long shot, he suggested that my biopsy be sent out for analysis. They expected the analysis to take eight weeks, but, if positive, there was a clinical trial that I could get into for a new medicine that was showing great promise.
Monday morning the test confirmed that I had post-obstructive pneumonia, and the decision was made for me to begin radiation treatments that week to begin shrinking the lung tumor to clear the pneumonia. During the radiation treatment, things got harder. My esophagus was accidentally burned and I was unable to eat. Just drinking water became a challenge, and I lost 35 pounds. I finished radiation the night before my 51st birthday. We drove home from Houston on my birthday, and about all I could do was just sit in the recliner and sleep. That afternoon my phone rang and it was my doctor’s office calling to tell me that my mutation analysis had come back in an unexpected four weeks. The results: positive for EML4-ALK. God had arranged a terrific birthday present. We started making arrangements to enter the clinical trial, but I would still have to do three rounds of chemo and show progression of disease to enter the trial.
One month later, I had my first round of chemo. The next day, I watched my oldest son graduate from Texas A&M. I was feeling better and suddenly was able to eat. Hope was on the horizon. But two months later, we learned that although the chemo had stopped the lung tumor, the cancer was still spreading to other parts of my body. A third round of chemo was scheduled with a different medicine. We were assured that since I had done so well with the first two rounds of chemo, this new medicine would be a breeze. Ten days later I was back in the hospital having developed a neutropenic fever.
Three weeks later we were back at MDA for follow-ups. The new chemo had been effective at stopping the spread of cancer, but it had also stopped me. Since I had such an adverse reaction to the chemo medicine, I was automatically qualified for the clinical trial. God, once again, was working in unexpected ways. I took my first dose of clinical trial medicine that morning. This medicine would target the ALK mutation, and I would need to take it twice a day, but the side effects were very limited compared to standard chemo treatments.
Six weeks later, I was back at MDA for new scans. For the first time, my scans showed a reduction in cancer activity. The twelve-week scans showed no evidence of disease. Twenty months later, I am continuing to take the medicine and have maintained the “No Evidence of Disease” status. God has blessed me with a miracle that I am thankful for on a daily basis.
When I look back over these last two years, it is amazing to see how God has moved and placed all of the right people in the right place at the right time. Those people have not just been doctors and nurses, but people in the labs, the waiting rooms, friends and family. This cancer journey was unexpected for us, but God already knew what was ahead of us and began his work long before we started the journey. Today, it is my hope and prayer that I am one of the right people God has placed in the journey that others are facing.
DIANA – CONNECTIVE TISSUE
Despite the fact that 23 years have passed, Diana DeVoe still cries when she talks about the day she learned that she had cancer. Then an 18-year-old college freshman at The Ohio State University, she waited until she went home for Christmas to have her family doctor look at the knot that had popped up between the knuckles of the first and second fingers of her left hand. He referred her to a specialist for a biopsy. She woke to find herself alone in the hospital while her father had gone to get her mother.
“Before my parents even got back, because I was 18 and considered an adult, they told me alone that I had cancer,” DeVoe says. “And it was bad.”A cancer of the connective tissue, called alveolar rhabdomyosarcoma, had wrapped itself around her fingers and the connecting muscle, requiring that two fingers be removed along with most of the muscle. The surgery was followed by radiation and more than two years of chemotherapy. During the week of surgery, DeVoe celebrated her 19th birthday.
The treatment kept her cancer-free, but at a price.
Diana DeVoe, now 42, is being followed for late effects and counts among her friends a number of young adult cancer survivors. Photo by Glenn Zamora.
When DeVoe received her diagnosis in 1988, she fell in the, as yet, unnamed category of an adolescent and young adult (AYA) cancer patient. Now defined by the National Cancer Institute as people ages 15 to 39, AYA patients have seen growing attention because of their unique position at the crossroads of pediatric and adult oncology.
Researchers have identified the primary concerns for AYA survivors as detection and management of late effects, assessment and support of psychosocial functioning, provision of health-related education, and assistance with identifying and meeting financial challenges.
Kevin Oeffinger, MD, director of the Memorial Sloan-Kettering Cancer Center Adult Long-Term Follow-Up Program, says by bringing AYAs into the system for surveillance, other issues can be identified and referred, but the biggest challenge remains convincing them to follow up on any recommendations once treatment has ended.
Research by Oeffinger and others has shown that survivors of pediatric and young adult cancer face a substantial risk of late effects and early mortality. By 30 years from the initial diagnosis, 73 percent of pediatric cancer survivors will develop at least one chronic physical health condition; in 42 percent the condition will be severe, life-threatening, disabling or result in death.
If there were a poster child for both the needs and the challenges of this age group, it would be DeVoe.
After her fingers were amputated, DeVoe went home with her parents, crawled into her childhood bed and took pain killers one after the other so she wouldn’t wake up. She lost 55 pounds during two years of combination chemotherapy using cisplatin, vincristine, doxorubicin and cyclophosphamide, during which she remained home, enrolled in and dropped out of a community college to maintain her status as a full-time student so she could stay on her parents’ insurance plan. When she returned to campus, where she focused on getting out of college and keeping people at arm’s length, she told new friends that she lost her fingers in a car crash. After graduation, she took a position with a national hotel chain, where she had interned, moving to Dallas to manage hotels.
Then, in 2006, on her 36th birthday, she woke up and couldn’t feel her toes. As the numbness turned to pain, a visit to her internist began a physician odyssey that took her to an orthopedic surgeon, a sports doctor, a back doctor, a neurologist, a pain specialist and, finally, a neurosurgeon who performed a nerve biopsy. Nothing helped. She went back to work, struggling with the pain, which had now moved up her right leg to her hip and her left leg to her calf. By early 2011, DeVoe was receiving disability benefits, unable to drive more than 10 minutes at a time and struggling emotionally. Then she was referred to Angela Orlino, MD, director of the Young Adult Program at After the Cancer Experience (ACE), a survivorship program of Dallas Children’s Medical Center and the University of Texas Southwestern Medical Center, one of the oldest AYA programs in the nation.
Orlino identified the neuropathy and pain as probable late effects of DeVoe’s cancer treatment and helped her obtain insurance coverage for the surgery to implant a spinal cord stimulator to help with the pain.
On a positive note, after more than 20 years, DeVoe began to make peace with her cancer diagnosis when she met other AYA survivors at local and national meetings.
“I ran away for 22 years,” she says. “I am finally getting it that God didn’t give me cancer; it’s just something that happened. I was in anger and denial for so long and now I am working through it.”