Sharing Our Cancer Journey on Social Media

This is a guest post by Susan Hill, a member of the KCA’s Patient & Caregiver Advisory Council and wife and caregiver of Bruce Hill.

Our kidney cancer journey officially began in May 2017 when a CT scan revealed a large tumor on Bruce’s right kidney which resulted in a nephrectomy soon after. The Stage-IV renal cell carcinoma (RCC) diagnosis came in October 2017 when a lung biopsy revealed the cancer had spread to Bruce’s lungs.

I say “officially” began because there were symptoms and warning signs that were both discounted by us and misdiagnosed by doctors in the year prior to diagnosis. This frustration we felt about Bruce’s metastatic RCC diagnosis led us to encourage others to focus on their own health, schedule annual physicals, and take note of the slightest symptoms to promote early cancer detection, regardless of type.

I had already been using Instagram as a sort of pictorial diary, documenting life’s events and places I had been. Cancer was now part of our life and social media became a tool for keeping family and friends informed about Bruce’s kidney cancer.

I began posting photos of our cancer journey on Instagram: leaving the hospital after each surgery, Bruce drinking contrast dye in preparation for CT scans or receiving immunotherapy treatments, sharing good scan results and the not so good, and Bruce on Capitol Hill advocating for kidney cancer research. More importantly, I was posting photos of us living our lives and treating kidney cancer as part of a larger journey. For example, a trip to New York City for an oncology appointment turned into an excuse to visit the Metropolitan Museum of Art. We went on a lot of hikes around the Hudson Valley and I documented them all on Instagram to show everyone how well Bruce was responding to his treatments.

My kidney cancer-related Instagram posts included hashtags such as: #ourcancerjourney, #puttingthecanincancer, #livingwithcancer, #inspireothers, #kidneycancer, and #renalcellcarcinoma. It was through these hashtags that other kidney cancer patients and caregivers began reaching out to me in comments or direct messages. I learned these were people using social media in search of inspiration, hope, and advice on where to turn because their loved ones were recently diagnosed with RCC.

Over the past five years I have met many patients and caregivers virtually:

• A woman whose father was newly diagnosed with RCC and looking for advice
• An RCC patient looking for inspiration from a fellow patient
• A woman whose husband had Stage-IV RCC and was losing faith
• The daughter of an RCC patient who wanted to know more about Bruce’s treatment
• A fellow Memorial Sloan Kettering patient lauding the care received there
• The frustrated sister who thought her brother should do more about his Stage-IV diagnosis
• A scared wife who was looking for answers about RCC care and a kindred spirit

We would have conversations about loved ones’ diagnoses, cancer care facilities, treatment options and side effects, and the importance of self-care. I gladly share our story if I think it will help with their cancer journey, answer questions, and always refer them to the KCA and Smart Patients for additional information. I always return to our conversations with a direct message to see how they are managing their journeys. Some of these relationships have lasted for several years and, just recently, I had to send my condolences to a social media friend who lost a parent to RCC.

In 2018 Bruce utilized social media to relay his kidney cancer diagnosis to a much larger group of friends and family via a Facebook fundraiser. His post allowed him to share his story, create awareness about RCC, and raise over $9,000 for kidney cancer research.

Social media has also helped to make other kidney cancer connections for us. It led us to the KCA and Patient & Caregiver Advisory Council and in 2019 we were approached via social media by Health Monitor Network which resulted in us being the cover feature for “Advanced Kidney Cancer: Renal Cell Carcinoma” magazine, which was distributed to over 200,000 hospitals around the US.

While some people choose a more private approach to their kidney cancer journey, Bruce and I have chosen to share ours on social media to promote early detection, keep in touch with a larger group of friends and family, and connect with fellow patients and caregivers along the way. Be sure to give us a follow at @bornatthewrongtime and @soxfaninny.

For one-on-one support, contact the KCA’s Patient Navigator Program.