According to the American Cancer Society, 85 of every 100 people (age 20 or older) who are diagnosed with chronic lymphocytic leukemia (CLL) will be alive at least 5 years after their diagnosis.1 And an analysis of information from more than 1,400 people who were diagnosed with CLL between 2006 and 2014 showed that half of these patients survived for at least 17.5 years.2
Survivorship can mean different things to different people. Some people define survivorship as “living with, through, and beyond cancer.”3 Based on this definition, survivorship begins at cancer diagnosis and includes anyone who has had cancer.
People who survive cancer have different feelings about their cancer experience, including gratitude, concern, relief, guilt, and fear. Some people say that they appreciate life and accept themselves more after a cancer diagnosis. Others become anxious about their health and find everyday life challenging. For many patients, new challenges surface over time, including worries about cancer recurrence, sexual health, and fertility concerns, as well as financial and workplace issues.3
Many nonprofit organizations are devoted to supporting patients with cancer, cancer survivors, and their caregivers and families through education and advocacy. The mission of one of these organizations, Patient Power, is to ensure that patients “get the right treatment at the right time working with the right healthcare team.”4
Wendy S. Harpham, MD, is a cancer survivor and an internal medicine doctor. She tells her story on the Patient Power website: “I was 36 years old. I was a mother of 3 children under 6. I had a very busy solo practice of internal medicine. [Then] I was diagnosed with indolent lymphoma. I had to close my practice for 10 months while undergoing intensive chemotherapy. A few months into my first remission, I recurred,” she said, and “was in and out of treatment for 15 years before we achieved this current wonderful 10-year-plus remission. Because I was forced to retire from clinical medicine, I turned to writing and speaking as a way to continue to care for patients.”5
Dr. Harpham describes her 3-step approach to getting good care and living as fully as possible. For cancer survivors, she recommends obtaining knowledge from reputable sources, finding and nurturing realistic hope, and taking action. She emphasizes that this third step, “acting on your knowledge and hope in ways that improve your life,” is critical.5
Dr. Harpham reminds cancer survivors that in addition to their oncologists (or hematologists), primary care doctors are an important source of information and hope for medical care. Primary care doctors look at the whole patient rather than focusing exclusively on cancer and its aftereffects. They check the patient’s heart, lungs, kidneys, skin, energy, and any age-related problems. Together with the oncologist and the patient, primary care doctors can develop a care plan for the patient that follows the best follow-up guidelines that can help to prevent or address any problems that arise.5
However, there can be special challenges for primary care physicians when caring for people with a history of cancer. Dr. Harpham notes that the typical approach to diagnosing problems, choosing tests, and recommending treatments, can change for a patient with cancer. A cancer survivor who has a certain symptom, such as breathing difficulty or back pain, may need an x-ray or another imaging test sooner than someone who has never had cancer. Primary care doctors may also need to change some medications or doses if the patient has had cancer.
CLL survivors, as well as other cancer survivors, can benefit from keeping all medical appointments, staying as healthy as possible, doing gentle exercise, and eating a healthy diet.6 Reaching out for emotional support can also help to reduce stress, anxiety, or guilt. Seeking out correct information can help people understand their disease better and feel more in control.6
References
- Cancer.net. Leukemia-chronic lymphocytic-CLL: statistics. Updated January 2020. www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/statistics. Accessed February 29, 2020.
- Baliakas P, Mattsson M, Hadzidimitriou A, et al. No improvement in long-term survival over time for chronic lymphocytic leukemia patients in stereotyped subsets #1 and #2 treated with chemo(immuno)therapy. Haematologica. 2018;103:e158.
- Cancer.net. Leukemia-chronic lymphocytic-CLL: survivorship. Updated October 2017. www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/survivorship. Accessed February 29, 2020.
- Patient Power. Our mission. www.patientpower.info/about-us/our-mission. Accessed February 29, 2020.
- Patient Power. Survivorship care: a doctor turned cancer survivor shares advice. www.patientpower.info/living-well/survivorship/survivorship-care-a-doctor-turned-cancer-survivor-shares-advice. Accessed February 26, 2020.
- Medical News Today. What is the outlook for chronic lymphocytic leukemia? www.medicalnewstoday.com/articles/322756#living-with-cll. Accessed February 29, 2020.
