Make Support Inclusive and Unique
As a social worker at CancerCare for the last 20 years, I have frequently worked with adults who have a rare cancer. Since CancerCare‘s headquarters are in New York City, the patients in my general patient groups or individual counseling sessions have access to some of the best cancer centers in the country yet they have not shaken off the stigma or fear attributed to their “double whammy,” and often, even with the best cancer centers, struggle to find oncologists who instill confidence.
Patients in our telephone support groups or who receive counseling over the phone have the added frustrations of living in rural areas, less access to technology, and often without the education and financial means required to pursue every lead to get the best care possible. Diagnosis in this population leads to genetic testing, where they learn that siblings and children are at high risk for developing the same cancer at some time.
Although the scenario is dire, there is still hope. Many patients I have worked with achieved long remissions, and some were even cured. Others made meaning of their cancer by participating in clinical trials to further research, and although apprehensive, the patients felt good that their diagnosis encouraged family members to find out their own status and, when positive, to be proactive about monitoring their health and wellness with early checkups and behavioral changes. The resiliency of the human spirit always inspires me.
When I have a person with a rare cancer in my patient group, I spend a little more time in the group to normalize what’s brought the members here. Each of them has heard the words: You have cancer. That’s their commonality and, for some patients with rare cancers, this the first time they feel like one of them. In individual counseling I put more emphasis on empathy toward the frustration and hopelessness of having a rare cancer and encourage patients with a poor prognosis to “dream” — works the same as setting goals, but without feeling like it is homework.
I break dreams into three categories: immediate, within the next 18 months; intermediate, from 18 months to 5 years; and long-term, as far out as is possible. After a diagnosis, many people stop dreaming, especially those who feel helpless. It takes time for some to trust the process and play with hope again, but when they do it lightens the load and reminds them of who they are and who they want to be, no matter their prognosis.
In 2002, Congress passed the Rare Disease Act establishing the Office of Rare Diseases to coordinate a national agenda, including research and education.
Since then pharmaceutical companies have been ramping up their research and development departments to find treatments and cures with encouragement and help from the FDA and the Institute of Medicine. Expedited approvals, smaller cohorts required for clinical trials, and possibly expanding periods of exclusivity for rare diseases are providing additional incentive.3
In addition to the free services offered by CancerCare, other organizations that can help patients with rare cancers are the National Organization for Rare Disorders (NORD), Cancer.net, and the Rare Cancer Alliance.
Richard Dickens is the director of Client Advocacy at CancerCare.
1. Cancer Facts and Figures 2017. American Cancer Society web site.
2. Greenlee RT, Goodman MT, Lynch CF, Platz CE, Havener LA, Howe HL. The occurance of rare cancers in U.S. adults, 1995-2004. Public Health Rep. 2010;125(1):28-43 .
3. Rare disease: all the rage in big pharma. FierceBiotech web site. http://www.fiercebiotech.com/special-report/rare-diseases-all-rage-big-pharma. Accessed May 16, 2017.