Our goal is to make sure that all our patients receiving survivorship care at the Mass General Cancer Center, and those who received their initial treatment elsewhere, can have their needs for life after cancer recognized and get the care they need.
Survivorship literally means the act of surviving. Cancer survivorship could be defined as surviving after cancer. However, the field of cancer survivorship grew from a recognition that there is more to life after cancer than just surviving. Patients experience changes in their mind, body, work, and relationships after a cancer diagnosis. Many patients feel a sense of uncertainty regarding their health care after the intense period of diagnosis and initial treatment for cancer. The field of cancer survivorship care was established to identify and meet the diverse needs of patients who are surviving after a cancer diagnosis and to help them thrive and return to health or even achieve better health and well-being than they had before being diagnosed with cancer.
The National Coalition of Cancer Survivorship explains that “The phrase cancer survivorship was created to describe this broad experience on the cancer continuum — living with, through, and beyond a cancer diagnosis.” The National Cancer Institute and the National Comprehensive Cancer Network define survivorship as any patient living with cancer “from the time of diagnosis, through the balance of his or her life. Family members, friends and caregivers are also impacted and are therefore included in this definition.” Not all patients feel like survivors, even when their health is good, and some people do not like the term survivor or survivorship. Some people think survivorship care should begin at the moment of diagnosis; others feel it should focus on long-term cancer survivors after initial treatment for cancer is over. The words and definitions are not what matters to us.
Our goal is to make sure that all our patients at the Mass General Cancer Center, and those who received their initial treatment elsewhere, can have their survivorship needs recognized and get the care they need through our cancer survivorship programs. For some patients, cancer survival includes managing ongoing pain from cancer, for others it is coping with uncertainty and fear of recurrence and for others it is getting more information about the risk of cancer so they can help other members of their family. The field of survivorship care is relatively new and continues to evolve. Our cancer survivorship program offers diverse specialized world-class services and focuses on individual relationships between patients and their care providers from many disciplines. We continue to grow and evolve as we constantly identify the needs of our patients and find new ways to help people live longer and better after cancer. We are here to help and connect you with the resources, education and support you need.
Many patients report feeling a sense of unease after completing initial treatment for cancer. From the time of diagnosis, there are often many medical appointments, tests and procedures and this intense period can continue for many months. Some patients will require surgery, radiation therapy, chemotherapy or all of the above, but during this sometimes difficult time, patients and their families become familiar with the members of their Mass General Cancer Center care team.
When treatment ends, patients and family members can feel alone and adrift. They may be told that they do not need to come to the Cancer Center as often, but they do not yet feel well. Or they may not know who to call for a problem or question – their surgeon? their medical oncologist? their primary care doctor? In 2005, these types of common concerns led the Institute of Medicine to put out a call to draw attention to this issue and the challenges of care for survivors of cancer, called “Lost in Transition.”
A decade later, this ongoing problem was eloquently described in the New York Times by a young woman after her treatment for leukemia:
Suleika JaouadIt took me a long time to be able to say I was a cancer patient. Then, for a long time, I was only that: A cancer patient. Now that I’m done with my treatment, I’m struggling to figure out who I am. On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger. The constant flood of doctor’s appointments, blood tests and phone calls from concerned family and friends have trickled to a slow drip. But off paper, I feel far from being a healthy 26-year-old woman. My disease has left countless invisible imprints in its wake: infertility, premature menopause, a thyroid condition, chronic fatigue and a weakened immune system that sends me to the emergency room on a regular basis. And that’s just the short list. Then there are the demons of depression and the fears of relapse that sneak into my head just when I think I’ve gotten a grip. The rattle of a cough in my chest. A strange bruise on the back of my leg. A missed call from my oncologist. Each of these triggers rips me out of my fragile, new reality leaving me to wonder: What happens if the cancer comes back? Will I ever feel normal again? And most daunting of all, how do I move forward with my life?
When talking to someone surviving cancer, keep the focus on them and be thoughtful in your comments and questions. For most people working through life after cancer, it is not helpful to receive unsolicited advice, hear stories about someone else's journey, or get bombarded with unrealistic positivity. Instead, acknowledge them, their specific situation and show personal interest and support. Ask meaningful questions about their needs and offer specific help that shows you've thought about them. Find out what you can give and focus on them as a person beyond the cancer. Cancer is a challenging condition, so the value of someone focused on providing meaningful support can't be understated.
Check out some of the inspirational stories of cancer survivors treated at Massachusetts General Hospital. Explore The Story Project for more stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way.
