Partners For Survival
The Lymphoma Research Foundation is well known for its patient education programs, and so when I joined the organization in 2008, one of my first objectives was to attend one of the Foundation’s in-person programs. That spring, when I walked into the ballroom, I was surprised to find it filled with more than 400 people—affected by what I thought was considered a “rare” disease—waiting with great anticipation for the program to begin.
I joined a table in the back, sitting with seven patients and their caregivers. We introduced ourselves, and the patients volunteered information regarding their personal experience with lymphoma, a blood cancer that takes many different forms. As one man introduced himself as a five-year mantle cell lymphoma survivor, a woman at the table became emotional. Her husband had received the same diagnosis a week earlier and this was the first time she had met someone who was living with the disease. The support and hope she felt, knowing that there were lymphoma survivors who could share their journey and who were living with a lymphoma diagnosis, was just as powerful as the medical information she received that day.
Yet, even as patients are willing to engage with the broader community early in their cancer journey, some are uncertain about where they fit in once they complete treatment.
For the more than 700,000 Americans currently living with some form of the disease, the lymphoma community provides crucial strength to patients during diagnosis and treatment.1 Yet, even as patients are willing to engage with the broader community early in their cancer journey, some are uncertain about where they fit in once they complete treatment. It is incumbent upon us as members of the lymphoma community to let these individuals know that our support continues long after they transition from active treatment to long-term survivorship.
As medical advancements continue to produce new and effective lymphoma therapies, these survivors find themselves part of a growing community. In the face of such encouraging data, it may be easy to overlook the fact that the good news that follows a clear scan or blood test does not necessarily signify an easy road ahead. According to the National Action Plan for Cancer Survivorship, many survivors say they suffer from ongoing physical, psychological or financial consequences of their cancer diagnosis and treatment.2 Survivors also may experience immense fear of recurrence, often associated with conditions like depression and anxiety, which can linger.
We’ve come a long way since I was diagnosed with cancer many years ago – for example, online resources weren’t even available then. Now there are more ways than ever before for people with cancer to get the information they need.
-Paul M., lymphoma survivor
A robust and engaged community of survivors can be invaluable in providing the support these individuals need. Letting those dealing with the lasting effects of a cancer diagnosis know that they are not alone, not only in their treatment, but also in their survivorship, may be one of the most important things we can do to support them.
Letting those dealing with the lasting effects of a cancer diagnosis know that they are not alone, not only in their treatment, but also in their survivorship, may be one of the most important things we can do to support them.
At the Lymphoma Research Foundation, we provide survivors and their loved ones with survivorship-specific resources such as in-person educational forums, a professionally staffed helpline, a one-to-one peer support group, and topic specific newsletters. All of these are designed to not only support the particular needs of an individual survivor, but to harness the power of the survivor community. We’re also partnering to better share lymphoma information and resources with patients, caregivers and loved ones through the Alliance for Resource Collaboration in Hematology (ARCH).
As one lymphoma survivor put it, “We’ve come a long way since I was diagnosed with cancer many years ago – for example, online resources weren’t even available then. Now there are more ways than ever before for people with cancer to get the information they need. The progress is encouraging, and I’m glad organizations are working to do even more to help support survivors.”
As we reflect upon the needs of lymphoma survivors, I cannot help but think back to that first education program that I attended. Before the program concluded, I sought out the attendees I had met that morning. The newly diagnosed patient and his wife told me that for the first time, they felt hopeful about their future. The gentleman who shared his experience as a survivor confided that it was his privilege to share his story and the path he had taken as a patient. He, too, felt empowered. There is perhaps no better illustration of the importance of, and need for, quality survivorship programming.
Meghan Gutierrez is the Chief Executive Officer of the Lymphoma Research Foundation. The Lymphoma Research Foundation is committed to serving all those whose lives have been impacted by a lymphoma diagnosis, while determinedly working to find a cure through an inventive research program. To learn more about the Lymphoma Research Foundation and its programs, visit lymphoma.org.
1 American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2014-2015. Atlanta: American Cancer Society; 2014
2 Centers for Disease Control and Prevention. National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Atlanta: Centers for Disease Control and Prevention; 2004