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.
Kay has primary pulmonary hypertension, a rare condition of the blood vessels in her lungs. There are no treatments that can cure her illness, and she needs multiple medicines.
She is admitted to the hospital almost every month because she has a hard time breathing. Episodes can be brought on by a mere cold or changes in the weather. During these hospitalizations she receives extra doses of medication, but it takes a few days for her to feel better.
Each time she is hospitalized, the palliative care team works with her heart and lung doctors to treat her breathlessness. The medications they prescribe allow Kay to feel calm and comfortable.
With the team’s help, Kay filled out an advance directive to make sure her doctors know she would never want to be on a ventilator. This does not change Kay’s treatment when she is admitted. But now the doctors understand what she would want if she were too sick to breathe on her own.
Andrew was recently diagnosed with pancreatic cancer. The tumor was too large to be removed by surgery, so he was started on chemotherapy to try to shrink the mass.
The diagnosis of cancer was extremely upsetting to him and his family. Faced with a life-threatening illness, he was deeply sad, had a hard time sleeping, and worried about his wife and child. He also had severe pain.
Andrew came to see the palliative care team for pain control and to help him cope with the stress of his illness. He was treated with pain medications that made him much more comfortable. He also spent a lot of time talking with the doctors and nurses about how to manage his illness. He learned ways to talk with his daughter and stay hopeful throughout his treatment.
Throughout this time, Andrew has been receiving chemotherapy; his cancer is responding well.
Deborah is a 36-year-old mother of an eight-year-old girl and a five-year-old boy. Diagnosed with breast cancer two years ago, she has metastatic disease involving her bones. This condition is causing severe pain. It has been hard to care for her children and get to work. Her oncologists, renowned leaders in their field, have focused intensively on controlling her cancer and identifying the chemotherapy plans that are most likely to work for her.
Deborah intends to fight this cancer with everything she has, and to be here for her kids as they grow up. Recently the pain has gotten so bad that she has been unable to sleep or eat, spending much of her day curled on her side in bed. She missed a course of chemotherapy because of the pain, and she has had to hire outside help to get her kids to and from school.
Her longtime internist finally referred her to the palliative care team at her local hospital. Within two days of beginning low-dose opioid therapy, her pain was well controlled; she was up and around, sleeping and eating, and back to her normal life with her family. She has been able to complete her latest course of chemotherapy, and her oncologist feels her scans are showing a good response to the treatment.
Deborah thinks every patient with cancer should work with a palliative care team along with his or her oncologist. She wonders how she would have gotten through her illness without them.
Millie is a petite woman who looks younger than her 57 years, but she has a failing heart. Even the smallest amount of physical exertion causes shortness of breath and other symptoms such as arm pain, so her cardiologists brought in the palliative care team.
The team was asked to help manage Millie’s pain and other symptoms and to help her grapple with the knowledge that her heart was losing its ability to pump strongly enough. They were also asked to help her with decision-making.
Millie could go home on her intravenous medication, but neither her son nor her daughter was going to be able to accommodate her needs. This is a common scenario in today’s families, so the palliative care team had to move to plan B – a nursing home. But no nursing home could be found that would accept a patient on this type of medication. What came next? Next, was plan C – living in the hospital.
Millie is now living in the hospital and receiving her medications. With Plan C in operation, the palliative care team has continued to help Millie feel as comfortable as possible and experience the best possible quality of life. This included providing the services of a massage therapist and transforming her hospital room with a beach motif so Millie could feel the freedom that the sea and sand always gave her. With the help of palliative care even her appetite improved! One day Millie said, “I would love some grilled salmon and rice. And if you can find some sugar-free ice cream, that would just be delightful.”