I was diagnosed with kidney cancer mid-April 2019. I was scared and had no answers. Having little experience with cancer, I basically thought I was dead and leaving my wife and 3-year-old all alone in the world.
The first surgeon I met with told me they would need to do an open incision about 12-18 inches across my body. He told me it was the only option. They weren’t talking to me about my cancer diagnosis. They were just talking about how they were going to cut it out.
I began seeking help through online support groups and forums. Initially, I was just looking to vent about my situation and have someone tell me I wasn’t going to die. That’s when I first heard from KCCure. After sharing my story in an online community, they sent me a direct message and told me that I had other options.
The advocates from KCCure told me that I should consider getting a second opinion. I told them that I had already contacted another center and the wait was going to be 45 days. The thought of waiting that long was unbearable. I was planning to move forward with the original surgery, but KCCure offered to try to expedite an appointment with UTSW Medical Center in Dallas, one of the best kidney cancer centers in the country.
I remember, it was a Thursday night. I said ok – but I really wasn’t sure they could change my situation. By Friday morning, I had 4 different phone calls from UTSW urology, oncology, billing, and a research coordinator. By Monday I was in the building talking to world renowned kidney cancer doctors and oncologists.
At this point my story changed drastically. I began becoming educated on how this would all work. Outcomes were explained to me. Backup plans were explained to me if primary plans failed. I had a real long-term plan. Nobody was talking about death at all. I removed myself from my former urologist and went all in with UTSW and never felt scared again. I actually began feeling like I had a shot at beating this. I had a robotic surgery by a renowned surgeon, and a fairly easy recovery as well partly due to his skill with the davinci robot and instead of a 18 inch incision I had small key hole sized incisions. I am now followed for my lifetime by UTSW oncology to make sure we are ready to fight again if it comes back.
The entire time KCCure checked on me periodically. Without KCCure I would have had open surgery with a urologist that didn’t deal with this sort of thing often and no follow ups with oncology and no chance at research studies for new medications. As you can see KCCure is VERY important to me and my story.
KCCure is an organization for patients and caregivers – created by patients and caregviers. Everyone there understands what it’s like to hear those three words: You Have Cancer. They know personally why waiting isn’t always an option. They are committed to helping patients navigate the tough times of diagnosis, the ups and downs of treatment, helping them get connected with better cancer centers, and awarding grant money to scientists on the verge of kidney cancer breakthroughs.
If you’ve been newly diagnosed with kidney cancer, my message to you is simple. Reach out to KCCure, find a community where you can connect with other people with the same diagnosis, and become an empowered patient. No matter where you live, you can get the best care. You deserve to have a plan that gives you confidence going forward.
I hope sharing my story will help someone else in my situation find the best care too!
