June 7, 2020

(The Sunday Republican newspaper decided not to print this op-ed piece or anything about National Cancer Survivors Day today).

The predominant definition of a cancer survivor is based on the moment one is diagnosed with cancer.
The predominant definition of cancer survivorship is living before, during, and after treatment.

Today, June 7, 2020 is National Cancer Survivors Day. It is a day that has been designated to celebrate the lives of those the are living with cancer, and those that have lost their struggle with the disease. This day takes on new meaning this year due to the Covid-19 pandemic and the increased susceptibility of cancer survivors to this disease, as well as the increased mortality and morbidity that accompanies it. In addition, sheltering at home has led to increased symptoms of anxiety, depression, and isolation of cancer survivors and their caregivers, as well as the general public. And as a nation, we are in the midst of hopefully starting to address racial disparities in our society, which includes disparities in cancer care and access.

But what does National Cancer Survivors Day mean to me? For me it is a day of frustration, but also one of hope.

Sadly, most cancer survivors and the general public, do not know the two definitions listed above. For cancer survivorship awareness to grow, these definitions need to be embraced by cancer survivors, their families, and caregivers. This also needs to be recognized by the local (of which I am a part of) and national medical community that has for far too long focused on blood tests, imaging tests, chemotherapy, radiation therapy, and now immunotherapy and more sophisticated forms of therapy, to try to successfully treat the disease, but most often not asking, “How are you living with your cancer?”

The local and national behavioral health communities are overwhelmed with increasing patient needs that go beyond caring for cancer survivors, but locally, we continue to have inadequate numbers of specifically trained oncology behavioral health providers and services.

I know this, because I live this. I am a ten year survivor of Acute Myeloid Leukemia, a disease that still carries a 25% survival rate of 3 years. This is not lost on me. My treatment included chemotherapy, radiation therapy, and a stem cell transplant. I have had a number of complications, some that have resolved, and some that persist. I am also experiencing the ultimate consequence of being a cancer survivor: living long enough to develop another life limiting illness. But I have been so fortunate to have had ten years to live a wonderful life with my wife, see my daughters grow into special women, participate in events with family and friends, develop new friendships in my professional and personal life, return to work with special partners and staff, and contribute to local and national cancer survivorship where I can make a difference in many lives.

Successful cancer treatment still can result in lifelong complications and requires surveillance for other diseases and cancer recurrence, but there must also be preventative care for conditions that includes, but are not limited to, heart disease, diabetes, hypertension, and obesity, while stressing tobacco and substance abuse cessation and alcohol moderation.

I am also a 32 year primary care physician, which adds to my perspective on how inadequately the medical community has addressed cancer survivorship. To that end, I founded Survivor Journeys™, a non-profit organization in 2015, to provide emotional, social, and educational support to cancer survivors, their families, and caregivers. We are trying to fill the local void in cancer survivorship services by offering cancer specific support groups and a caregiver support group (both now online through Zoom), an adult cancer survivor and caregiver mentoring program in which people further along on their cancer journey mentor those that are struggling, and through our partnership with Volunteer Management in Cancer Care (VMCC), we have access to more than 10,000 mentors nationwide. We also have pet therapy. Our annual educational event, Cancer Survivorship 101 has been cancelled due to the Covid-19 pandemic, but we have reorganized the format and will have monthly presentations about cancer survivorship on the Survivor Journeys™ website (www.survivorjourneys.org) beginning in July. Cancer survivorship requires a multi-pronged approach, as one size does not fit all survivors due to the different treatments and complications of each cancer and the effects on each individual survivor.

Cancer survivors, their families, and caregivers have heart wrenching stories. Each one is important to hear. However, if cancer survivorship is to grow, we must learn from the stories and become actively involved in developing programs and services. We also need our medical community to collaborate to develop cancer survivorship programs locally. No matter what you hear, our local hospitals do not have cancer survivorship programs and they do not have provider/administrative champions to develop these programs. Nurse navigators are involved in oncology departments in our local hospitals, but they do not function in a structured program, and as a result, they will not fully fulfill their role.

One month ago I sent an email to 27 members of the Baystate oncology department, including physicians, advanced level practitioners, and social workers in an attempt to continue to find ways we can collaborate (I have been attempting this for more than 5 years) to develop cancer survivorship programs and services. To date I have not received one response.

Cancer survivorship is 24/7. It is more than one event per year. There are wonderful local organizations and events that are involved in fundraising for cancer research and these need to continue, however most of those donations, made in honor of a loved one who struggled with cancer, do not help cancer survivors live their lives. I do think if donors realized this, cancer survivorship services would benefit from more targeted fundraising.

What are my hopes based on? More people are being diagnosed with cancer and more people are surviving. There will be more people who will need cancer survivorship, caregiving, and family services that will need to be met. Some will become advocates and I want to believe that organizations will collaborate. Local legislators have shown interest in helping to develop a local Cancer Survivorship Resource Center with Survivor Journeys™ which would be a game changer. In the meantime, there has been interest expressed from cancer survivorship desert populations to become involved, because they have no access to any cancer survivorship programs and services. National cancer survivorship speakers look forward to participating in Cancer Survivorship 101, because there is nothing like it nationally.

And my hopes are lifted by the caregivers and families of cancer survivors. We could not survive without their limitless love and countless sacrifices.

National Cancer Survivors Day? It is what we make of it. I truly believe the Greater Springfield region can be a template for the rest of the nation as to how a community can develop cancer survivorship services. As I have mentioned previously, this is much more than a day. It is about living each day.

Jay Burton, DO
President and Founder, Survivor Journeys™