Most people don't know much about kidney cancer at the time of their diagnosis. The Kidney Cancer Association wants to change that.
When Michael B. Lawing was diagnosed with kidney cancer, it was only really talked about in the general terms.
“I had never even heard of kidney cancer,” Lawing said, in an interview with CURE. It wasn’t until after the first surgery that he was aware of the uphill climb ahead of him. Still, through surgeries and immunotherapy treatments, Lawing remained positive. He knew that, no matter what the outcome, “we were going to do the best we could with what we had.”
In his dealings with patients and survivors, Lawing has a favorite quotation to repeat: “Do not deny the diagnosis, try and defy the outcome.” It comes from Norman Cousins, a journalist, professor and activist who believed that human emotions were the key to fighting off illness. To Lawing, defying the outcome means learning “how to cope with the situation the way it is, and then figure out the boundaries that I can expand.”
“There are things that are trying to impede us and we’ve got to be able to go out there and figure out ways around that,” he said.
Lawing first got involved with the Kidney Cancer Association (KCA) in 2007 — already a ten-year survivor at the time — when he stumbled upon their website and forum. Compelled by others telling their stories on the message boards, Lawing joined and began to tell his own story as well. He gained authority on the forums due to his vast knowledge, something that he attributes to his doctor at the time, who would draw diagrams and answer questions. Today, Lawing is a board member at KCA.
Lawing says he thinks patient education about kidney cancer is lacking, because of a disconnect between what doctors are telling patients and what patients need to know. Though doctors believe that they are giving all the information needed, patients are left with too many questions. “There’s a big disparity there. They think they cover all the bases but they don’t.”
KCA is working to bridge that gap, conducting symposia that brings experts together to exchange information. The panels are then available online, which Lawing says he hopes will trickle down practitioners and they start “to see how they can better the care they give their patients.”
At the symposia, KCA strongly encourages providers to keep their websites as up-to-date as possible. Back in 1997, Lawing didn’t many ways to get information himself. Now, though, the internet has helped patients to connect with one another and with the medical community.
Lawing points out, “I can probably take you to a bunch of websites, you can probably go out there and find hospital systems that still have stuff that’s dated 2004 [or] 2006.” When Lawing sees old information, he asks himself, “‘How much do they really care about me getting well?’”
Lawing says he hopes to see more innovative and creative ways to get good information on survivorship and treatment options to patients and survivors.
"[T]he education of patients as well as those who are engaged in the treatment of patients with kidney cancer,” is crucial, he says.
The KCA forum that Lawing first started out on is now located on Inspire.com. The forum there is part of KCA’s own community of registered members, which Lawing is a Community Leader. To learn more about KCA itself, visit kidneycancer.org.