Renal medullary carcinoma caregiver: Be your own cancer advocate

When my brother, Herman, was diagnosed with stage IV kidney cancer in early 2012, my family and I were devastated. We felt hopeless, especially when we learned that his type of kidney cancer, renal medullary carcinoma, was incurable.

To learn that a loved one may not be with you much longer creates a form of pain I can’t describe. The feeling takes over every aspect of your life. It’s crippling. With each month that passed and Herman was still with us, though, I started letting go of my fear and despair. I decided to do something that could help my brother and other patients like him.

Creating change in the renal medullary carcinoma community

I started searching the Internet for stories of people who also had renal medullary carcinoma. But months of searching online and making calls led to nothing but dead ends. There were no support groups. No social media pages. No websites.

As I was sitting on my couch one day, I thought to myself, “I wonder what it takes to start a nonprofit.” I had never had the desire to do so before, but I knew in my heart something had to be done for Herman and others like him.

I started by creating a website, followed by a couple of Facebook, Twitter and Instagram pages, all of which were devoted to patients with renal medullary carcinoma. People from all over the world quickly starting connecting and reaching out to me.

To date, there are a number of living survivors and their families on our Facebook page, as well as a host of caregivers who have lost their loved ones, but still stay plugged in. This is amazing to me, because when Herman was initially diagnosed, we could not find one other person with the exact same diagnosis. I’ve also been able to connect families with Nizar M. Tannir, M.D., Herman’s oncologist at MD Anderson, and give patients a chance at receiving the best possible treatment.

These families have become a part of my life. We keep in touch on a regular basis, and it makes all the difference because cancer is not something that anyone should go through alone. When patients like Hermann find that there are others living with their diagnosis, they also find a sense of comfort and regain hope that was initially lost.

Become your own cancer advocate

I also have become an advocate for renal medullary carcinoma by creating awareness. I’ve had the opportunity to lobby for cancer research in Washington, D.C. with the American Cancer Society Cancer Action Network. I also shared my brother’s story with my state senator. He took the time to listen to me and sponsored a bill, which was passed in South Carolina over the summer. The bill ensures that parents receive educational information on sickle cell disease and trait-associated complications. Had our family known about the correlation between sickle cell and kidney cancer before Herman’s diagnosis, we feel that we could have caught his disease sooner. For this reason, I’m currently working with my U.S. senator to make the bill become law across the entire country.

My point is, do what you can to make a difference. Even if the cancer you’re facing is incurable, I encourage you to talk about it. You never know how your story may help others who are going through the same thing as you. Don’t be afraid to reach out to others. You are your biggest advocate.