Ask any cancer survivor and they can recall the month, day, and year they were diagnosed. Some remember the time of day down to the second. The turning point came for me with a phone call from my doctor on Aug. 2, 1996, when I was 28.
"Hi Richard, I am sorry to have to contact you this way, but I have some troubling news. Your white blood cell count came back 392,000."
Having practiced as a nurse since 1992, I figured I had leukemia or one hell of an infection, and responded, "So I have leukemia?"
"Well, yes," was my doctor's reply. Due to my elevated white blood cell count, I was at risk of having a stroke, and was told to go to the Brigham and Women's Hospital emergency room.
What happened next was a blur. The doctor who greeted me in the ER told me I had chronic myelogenous leukemia (CML). A bone marrow biopsy confirmed my diagnosis. I was now in the chronic phase, with an incredible number of white cells in my blood. The good news was this phase could be cured. The bad news was the curative treatment was a bone marrow transplant.
When you are diagnosed with cancer, it is often the beginning of a long journey. At this point, a medical team is assembled and a plan is formulated to attack the cancer. I was fortunate to have a wonderful group of physicians and nurses at Brigham and Women's Hospital and Dana-Farber. I remain disease-free eight years later.
Now my life has taken a new direction: I am an oncology nurse practitioner working in the Lance Armstrong Foundation Adult Survivorship Clinic at Dana Farber. The clinic opened last year as part of the Perini Family Survivors' Center. I am part of a team that provides care and direction to cancer survivors once they have completed their primary treatment. We offer consultative services for post-treatment side effects such as infertility, heart disease, osteoporosis, and post-traumatic stress. In addition, we will perform vital research to study the long-term consequences of cancer-related treatments.
The clinic recognizes that patients hold a unique key in defining survivorship. Patients know their bodies, hopes, and fears better than anyone. This insight, in conjunction with the medical provider's knowledge of clinical issues, leads to informed decisions in which patients become their own self advocates. No stone should be left unturned with regard to possible options related to patient care. Patients should trust their healthcare team enough to discuss ideas and concerns related to treatments.
One of the clinic's goals is to provide information on long-term survivorship that is evidenced-based. We need to push for national guidelines that allow us to improve the way all survivors receive their follow up care. I recall a conversation I had with Dr. Eric Winer, director of the Breast Oncology Center at Dana-Farber. He encouraged our work by saying we have a solid foundation to build upon, but reminded me that there is a way to go in developing evidence-based practice in survivorship.
Being a cancer survivor has helped me understand the checks and balances of the patient and provider relationship. I am now better equipped to understand and accept a patient's decision about his or her care that I may disagree with as a provider. I feel privileged to be a part of a team that helps provide care and direction for cancer survivors once they have completed their treatment.
Learn more about the Perini Family Survivors' Center at Dana-Farber
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