‘Alive, No Evidence of Disease’: A Scientist’s Encounter With Cancer
Published on: Tuesday, July 22nd, 2014 View all Articles
By Jane Houldsworth, PhD, Special to Everyday Health
Article originally published by Everyday Health.
As my biomedical career developed in the field of cancer research, I never considered the possibility of my work benefiting myself.
Over the years, I had focused my studies on the genetics and biology of lymphoma and testicular cancer, but never planned to learn about them from the patient’s perspective. It certainly hadn’t occurred to me that someday I could be one of those de-identified patients listed in the spreadsheets for genomic studies.
Lumps in My Neck: The Process of Discovery
Four and a half years ago, at Christmas, I noticed a lump in my neck. It felt different than a swollen gland and it wasn’t going away, so I knew it needed to be looked at.
In January, I had an ultrasound that revealed it wasn’t a cyst, and that there were actually two firm masses. While I didn’t yet know for sure what it was, I knew they were getting larger.
A CAT scan showed that I also had multiple enlarged lymph nodes in my chest, but in the gradual process of defining my disease, a fine-needle aspirate did not show malignant cells. I had no other symptoms, and hadn’t noticed any discomfort due to the masses.
Because the lumps in my neck were still growing, I had a follow-up biopsy, on St. Patrick’s Day. Several days later while I was at work, the surgeon called. “I think you probably know more about this than I do,” he said. As he read the report to me over the phone, I realized he could be right. I had lymphoma. In fact, the type of lymphoma I had was not just a cancer I’d casually encountered over the years as a scientist, but it also was one that had been the focus of my work for more than 20 years.
No Time to Watch and Wait
Being well aware of the disease, I knew what needed to be done. I knew that it was imperative for me to obtain the most accurate grading of my biopsy specimen to ensure I got the best care for my particular case. I wanted to be sure the pathologist looking at my case was someone who saw these all day, every day. My own process of patient advocacy began the day I took my sample to Memorial Sloan Kettering Cancer Center, where it could be evaluated by my colleagues with whom I had previously worked and published.
The grading of the biopsy confirmed that I had follicular lymphoma (FL), but it was not clear whether I needed treatment immediately. In general, follicular lymphoma is a very slow-growing, or indolent, disease, and people can live for more than 20 years with it. But in 40 percent to 50 percent of cases, it can undergo transformation to diffuse large B-cell lymphoma (DLBCL), which is a more aggressive form and must be treated promptly.
My clinician, also a colleague, ordered a PET scan that showed a large mass (about the size of an orange) in my abdomen. A biopsy of this mass confirmed that my cancer had already undergone transformation and that I would require treatment immediately – no watching and waiting for me!
Accustomed as I was to evaluating the correlation of genetic biomarkers to certain lymphoma types, I could imagine my entries being listed in the spreadsheet: Date of Diagnosis – March 17, 2010.
Reaping the Rewards of Others’ Research: My Treatment
As I sat for my first eight-hour immunochemotherapy treatment, I looked at the IV with astonishment, marveling at all of the work that had gone into making the treatment possible. I contemplated all of the people who’d discovered the anticancer action of those drugs, the others who’d worked to determine the best timing and combinations of treatment, the countless individuals who’d submitted themselves for trials. The hours and work and lives that went into making my treatment possible were truly remarkable.
People often wonder what chemotherapy is like. We all have these preconceived ideas based on movies, and while I’d gone in with anxious expectations, I left my first day of treatment feeling relatively unscathed. The next day I took my daughter, then 17, for her driver’s test. A few days later, though, I started to feel “blah” as my doctor had aptly predicted I would.
As the treatments went on, the toxins started to take their toll. I had a total of seven rounds of treatment. The first four rounds of immunochemotherapy, known as R-CHOP, each lasted four to five hours. An interim PET scan showed a good response and indicated that I should then receive three rounds of a combination of drugs known as ICE. These treatment infusions required that I be hospitalized from Thursday through Sunday. While I am relatively young for a FL/DLBCL patient, it wasn’t easy.
Over time, I became progressively weaker. Losing my hair was the least of my concerns. I would come in to work for a couple of days in between treatments, but later, I became too weak even to climb into my bed. I resolved instead to sleep on the living room floor. With my clothes in a basket near my bed roll, I could sit up to eat, go to the bathroom, and stay involved in the action of my three children’s lives.
I was meticulous about taking the various medications and used spreadsheets to make sure I had followed the regimen correctly. I was also careful to eat “clean” food in order to reduce my chances of infection. While I was trying to be good, I was dying to have a crisp, crunchy salad!
Next entries for the spreadsheet: Treatment Start Date – April 22, 2010, Treatment End Date – July 20, 2010.
“Alive, No Evidence of Disease’
While my work as vice-president of research and development at Cancer Genetics, Inc., already focused on developing molecular tests to assist in the diagnosis and prognosis of certain cancers, my own experience with cancer reinforced just how important this information was. I wanted to make sure clinicians had access to the most robust and accurate molecular information that would help inform and assist them in personalizing patient management andtreatment strategies. Depending on the disease, that could mean the decision between surgery or no surgery, watchful waiting vs. immediate treatment, type of anticancer used in treatment, and so on.
I also realized how important it was that the information not only be available to the doctor, but also was integrated and compiled in a way that would make sense for busy clinicians. Additionally, I became an advocate for improving our ability to accurately diagnose on fine-needle aspirate material.
Since my diagnosis, Cancer Genetics has released several unique, patented tests for the diagnosis and prognosis of non-Hodgkin’s lymphomas, leukemias, kidney cancer, and cervical cancer. It remains my mission to make sure that these tests, along with our other diagnostic services, are as complete as possible to assist clinicians in personalizing cancer care.
I have no idea how long I lived with lymphoma before it was diagnosed, nor how long it will be before I need additional treatment. During treatment, I learned to set goals, which in the beginning were small – like getting through a procedure, or simply making it through to the next day. Now, I plan toward the next appointment and CAT scans. In the meantime, my mantra remains, “I have today,” and I will continue to work with my exceptional team of scientists to create more and better diagnostic tests. Every day comes with a thrill of discovery, and the promise of better treatments.
Next entry for the spreadsheet: Status [Date of last known status] – May 15, 2014, Status – Alive, no evidence of disease.
Jane Houldsworth, PhD, vice-president of research and development at Cancer Genetics, Inc., lives with her husband, son, and two daughters in New Jersey. She enjoys gardening and cross-stitching.
Originally published online by Everyday Health.