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Patient Stories

Kidney Cancer Patient Communities Matter

Kidney Cancer Patient Communities Matter

When my husband was diagnosed with kidney cancer in 2009, the first thing I did was crawl into bed and cry for a few weeks.  When I finally emerged from my cocoon of despair – oddly enough – the place I turned to was Facebook.

I searched for a group dedicated to kidney cancer. Then I found someone who looked like she knew what she was talking about and looked to be about my age. I sent her one of the saddest, most desperate private messages ever.

I told her how devastated and scared I was, how I couldn’t go one minute without thinking about cancer.  My whole life was consumed with this diagnosis and I couldn’t imagine a way forward.

The woman was Liz Lewis and she saved me that day.  Her experience was similar to mine, a working mother with a husband diagnosed in his 40s with kidney cancer.  They were a year or two ahead of us in their journey, so she knew exactly what I was going through. She pointed me in directions I wouldn’t have considered and connected me with others. More than anything, she reassured me that things would get better. Her message helped me rise from a quivering mess to an educated caregiver.

Studies have shown us that a cancer diagnosis often results in post-traumatic stress disorder and many patients suffer from debilitating anxiety that keeps them from being able to function normally. Our own KCCure research revealed that 70 percent of kidney cancer patients, regardless of stage of disease, had anxiety levels that would necessitate pyscho-social intervention. Yet few resources exist to help patients with this emotional toll of cancer.

As an organization, one way that we can help patients is by connecting them with others.  Not only are new patients relieved to find a mentor who understands what they’re going through – the mentors benefit as well. Giving back is an important part of achieving post-traumatic growth – the ability to rise beyond a tragedy and move forward. The relationship formed in patient communities offers benefits to new patients as well as long term survivors.

In the past year, we’ve built an amazing team of leaders who have helped us extend our reach to over 20,000 patients.  The story of Liz and I has played out thousands of times again in the many communities dedicated to kidney cancer patients. Seeing the moment – when someone who has reached out in desperation realize that they are not alone – that’s what advocacy is all about.

It’s one of the reasons that we’ve made kidney cancer communities an integral part of KCCure. In addition to serving as beacons of hope for patients and caregivers – they keep our organization grounded to the people who are fighting this disease day in and day out.  As an advocate, it can be easy to become lost in your own story. But doing so eliminates any ability to effectively understand and advocate for the diverse needs of the community you’re claiming to represent.

If you or someone you care for has been diagnosed with kidney cancer, we encourage you to seek help from others from any one of the amazing kidney cancer patient communities that exist.  Whether you have stage 1 disease or stage 4 disease, there is a place of comfort for you. You are not alone!

Learn more about Kidney Cancer Patient Communities here at KCCure!

 

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Dena Battle is the President of KCCure. She also serves on the Advisory Board for the Johns Hopkins Sidney Kimmel Cancer Center and as a member of the Patient and Family Advisory Council.

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