Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
As much as patients look forward to the day they can ring the bell or hear they have no evidence of disease, it can also mean they will be sent out on their own to sort through life with the long-term damage of cancer.
I can't imagine life without walking into an oncology clinic at least once a month. I consider my oncologist my primary care doctor on any form that asks, as I see him frequently enough to complain about any ailment I might normally take to a walk-in clinic. I also wonder what it would be like to not see my oncology team with such regularity.
What happens when you ring the bell, have no evidence of disease (NED) or graduate from the cancer world? From conversations I've had with peers, it's a long sought-after place to be, but one-many will find scary and isolating once they get there—especially as they are left to deal with the long-term side effects of their cancer treatment.
Cleaning up and managing the physical, emotional, and financial mess that surgery, radiation and treatment leave behind can take a lifetime, and being left without routine access to the provider who helped manage this care in the past can seem isolating. It can feel especially isolating because this is a specialist who is trained to treat the actual disease, not what happens long after the disease is gone.
I got a call late one night on my work line from a survivor who was several years out from treatment. She was calling for help, or at least to connect with someone, anyone who would understand what she was dealing with years after she was deemed "cured." Her complaints fell on deaf ears with her friends and family, and she was feeling more and more isolated as she struggled to find her "new normal" with a body that continued to betray her. Her oncologist and primary care doctor weren't much help in providing the medical and rehabilitative care she needed, and she felt cast off by her care team.
This is where the power of community comes in to play. I directed her to my own cancer community, where I assured her she would find others who could relate with precision to what she was going through. I even offered up a "guess" as to what her physical issues were, as the repercussions of the surgery and radiation for colon and rectal are all too common. I promised she would find empowerment through the advice and experience of other survivors, and she would learn and find the confidence to take control of her own care. I only promised because I could tell in her voice she was ready to take charge and do what was best for herself as her own advocate.
Her story reminded me of the void that appears after someone "graduates" from oncology. Patients are told to focus on ringing that bell, but they are rarely warned of what lies on the other side of the infusion room door when they walk out and it slams shut behind them. Oncologists are often ill-equipped to help a patient navigate the long-term repercussions of disease, and a patient can feel lost on where to go for help. Who drives their very specialized medical care after their oncologist has done their job of treating the cancer? This is where I plug the importance and need of palliative care, and it's also where we need to do better at providing patients long-term transitional care outside of treatment.
This woman's story is a clear example of the gaps that can be filled by palliative care and through connecting with patient advocacy communities. No one is going to understand your issues better than someone living with them. When we don't feel heard or helped by our health care team, we can be heard and helped by our cancer peers— many of whom have a passion to help and support those who have long rid themselves of this disease but can't rid themselves of the damage it has done. When we don't have access to the medical support we seek, we have each other. No one knows your disease better than someone who has faced it themselves, so don't be afraid to connect long after your disease has gone.