Palliative care connects the physical and psychosocial dots around the whole patient. It has transformed the quality of my life and enhances the active clinical treatment I receive from my oncologist.
—Selma R. Schimmel
This is the first time I’m going public with the fact that I have advanced ovarian cancer. I thought I could avoid the fate of my mother and her mother, both of whom died of ovarian cancer in their 50s, and live well past my 60s and even 70s. But at 58, I’ve had to accept that that is not likely. I live and plan my life in shorter increments now and hope that new therapies will continue to buy me more time.
I did everything I could to avoid getting ovarian cancer. When I was diagnosed with breast cancer in 1983 at the age of 28, it seemed that if I didn’t take control of my care I would die. For 1 year prior, I first felt a painful, palpable hard mass in my left breast, I couldn’t get a doctor to take my suspicions seriously and biopsy the tumor. Every doctor I saw insisted I was too young to have breast cancer.
Finally, a surgeon I knew agreed to biopsy the mass, and the pathology report showed it was malignant. The diagnosis changed the course of my life. I left college, where I was studying medical sociology, and underwent aggressive treatment to cure my cancer, including a regimen of CMF (cyclophosphamide, methotrexate, and fluorouracil), and a lumpectomy, followed by radiation. I also founded Vital Options, the first advocacy organization for young adults with cancer.
In 1999, when BRCA1/2 mutation testing was still investigational, my father, older sister, and I were screened, and both my sister and I tested positive. We repeated the test again after it became available for clinical use. The miracle of this story is that all four of my nieces are negative for the BRCA gene mutation. Since I don’t have children, this terrible genetic legacy that has plagued my family for generations has come to an end.
Palliative Care Is Transforming My Life
Ten years ago—hoping to escape my genetic fate, and in celebration of being cancer-free for 20 years—I decided to have a prophylactic oophorectomy. Although the decision was a difficult one, I wanted to reaffirm my life and be as proactive as I could to stay healthy. But when I awoke from the surgery, I was told that I already had confined, very early-stage ovarian cancer.
I was treated with carboplatin and paclitaxel, and we all expected a good outcome. Unfortunately, multiple localized lesions have appeared over the years, requiring various therapeutic approaches, including an experimental protocol with a PARP inhibitor.
Despite these efforts, last year the cancer spread to my lungs. Although those lesions responded quickly to treatment, a mass in my psoas muscle and near my bowel caused me so much pain, I was referred to a palliative care specialist for pain management.
The experience has given me a good deal more than just pain relief. I now recognize in a very personal way the great value palliative care brings to the continuum of cancer care. Palliative care connects the physical and psychosocial dots around the whole patient. It has transformed the quality of my life and enhances the active clinical treatment I receive from my oncologist.
While I know that I will most likely follow in the footsteps of my grandmother and mother and never see old age, I’m not giving up. I am also finding new meaning and purpose in this phase of my cancer journey. I’m currently on a regimen of oral cyclophosphamide and infusions of bevacizumab (Avastin), and I’m pleased that early indications suggest the combination may be slowing the spread of cancer.
The transition to palliative care has made all the difference in my ability to maintain my fast-paced career and continue to function at a high level in all areas of my life. For the first time in 30 years, cancer is almost incidental to my care. Now, the quality of my life is paramount.
I decided to go public with my ovarian cancer recurrence because I felt an obligation to help other cancer survivors as well as physicians understand that the transition to palliative care does not mean surrender. My experience is proof that patients can live with advanced disease and still be a vital force, maintaining control of their lives.
I think many people associate palliative care with end-of-life hospice care, and that misperception needs to change. The best way to do that is by introducing the subject of palliative care into standard cancer care earlier on—soon after the initial diagnosis—and certainly by integrating the two practices as soon as a patient is diagnosed with metastatic disease.
In addition to my first-hand experience with the benefits of palliative care, I’ve also become educated about the importance of increasing the understanding and use of palliative care through the work I do as a member of C-Change, an organization dedicated to eliminating cancer as a major public health problem, and its National Conversation Subcommittee of the Assuring Value in Cancer Care Advisory Committee, a collaborative effort by ASCO and C-Change. Our efforts are focused on stimulating a national dialogue about palliative and hospice care.
Through this work and my activities with Vital Options, I realize what a wonderful opportunity I have to be the messenger to both patients and physicians about the importance of demystifying palliative care by incorporating it into the medical oncology discussion. With routinely accessible palliative care, all of the patient’s needs—physical, emotional, practical, and spiritual—can be met.
Living a Full Life
Coming to terms with having metastatic disease is difficult, and while I am fortunate to still be able to receive beneficial treatment with the possibility of a longer life, I must also be realistic: My disease may one day lead to that transition from palliative care to hospice care. But I’m not there yet. Although I can’t control the progress of my cancer, I can control how I choose to cope with the seriousness of my situation.
My work has given my life meaning, and I am grateful to have the opportunity to tell my story and, hopefully, educate both survivors and oncologists about the possibilities of living a full life with advanced cancer.
Everything that happens to me now is a gift. ■
Selma R. Schimmel is the Founder and CEO of Vital Options International (vitaloptions.org), a cancer communications organization, which produces The Group Room and Advocacy in Action video programs. Ms. Schimmel lives in Southern California.
At the 2013 ASCO Annual Meeting, Selma Schimmel conducted a series of interviews with prominent oncologists, to get their perspectives on palliative care. These discussions can be viewed via The Group Room website here: http://thegrouproom.tv/category/cancer-topics/palliative-care/