Living with Lymphoma

As medical advances are helping lymphoma patients to live longer, survivorship programs are increasingly needed.

By Meghan Gutierrez, Chief Executive Officer, Lymphoma Research Foundation

This September, blood cancer patients and their families have come together to recognize National Blood Cancer Awareness Month. This initiative provides us with an opportunity to draw attention to the extraordinary scientific progress made in the modern era against this life-threatening disease.

The treatment landscape for many cancers, including lymphoma, has been fundamentally transformed over the past several decades. These advances have produced more effective therapies, fewer treatment side effects and, most importantly, longer lives.

This last point is incredibly impactful for the more than 700,000 Americans currently living with some form of lymphoma. As medical and scientific advancements continue to produce new therapies, survivors find themselves part of a growing community. In fact, the estimated number of cancer survivors in the United States has nearly quadrupled since 1975. In the face of such encouraging data, it may be easy to overlook the fact that the good news of a clear scan or blood test does not necessarily signify an easy road ahead for people with lymphoma.

Lymphoma survivorship presents a unique set of challenges for both patients and their caregivers. It is intensely personal and wrought with physical and psychosocial challenges. According to the National Action Plan for Cancer Survivorship, one-third of survivors say they suffer from ongoing medical, psychological or financial consequences as a result of their cancer diagnosis and treatment.

Letting those dealing with the lasting effects of a cancer diagnosis know that they are not alone, even in their survivorship, may be one of the most important things we can do to support them.

Due to the unique nature of lymphoma, many survivors also experience immense fear of recurrence, often associated with conditions such as depression and anxiety, which can linger for years. While these long-term effects are as diverse as they are personal, a robust and engaged community of survivors can be invaluable in providing the support these individuals need. Stress may seem more manageable after learning about relaxation techniques that have proven effective for others. Fatigue may not be quite as worrisome knowing that other survivors experience the same; and fertility issues may not appear as daunting when speaking with someone who has been able to raise a healthy family after a similar treatment regimen.

Letting those dealing with the lasting effects of a cancer diagnosis know that they are not alone, even in their survivorship, may be one of the most important things we can do to support them. As the number of lymphoma survivors increases each year, it is imperative to recognize their unique needs and create educational resources and opportunities for peer support.

Organizations like the Lymphoma Research Foundation can provide survivors with vital information tailored to their unique needs during this complex phase of their lymphoma journey, including survivorship-specific resources, educational forums, a professionally staffed hotline and a one-to-one peer support group—all of which are designed not only to support survivors in whatever ways may resonate with each individual, but to harness the power of the survivor community for the good of all those in need of support.

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. Through our unique survivorship programming, we and our many partners have an opportunity to foster a community of lymphoma survivors, to help them navigate that long and often uncertain road ahead.

As we reflect upon the needs of lymphoma survivors, I am reminded of the first time I witnessed the power of survivorship. When I joined the Lymphoma Research Foundation, one of my first objectives was to attend one of our in-person patient education programs. On that spring day in 2008, I was surprised to find a hotel ballroom filled with more than 400 people affected by this 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 lymphoma experience. 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 weeks earlier, and this was the first time she had met someone with the disease.

The support and hope she felt, knowing that there were lymphoma survivors who could share their experiences, were just as powerful as the medical information she received that day. The gentleman who shared his experience as a survivor confided that he had no intention of sharing his story that day but considered it his honor to assist a fellow patient, and, in the process, felt more positive about his own path.

I cannot think of a better illustration of the importance of, and need for, lymphoma survivorship programs.

To learn more about the Lymphoma Research Foundation and its programs, visit lymphoma.org.


This article was originally published September 30, 2015.