A Patient Shares Insights on Kidney Cancer Awareness and Advocacy

Following a social media takeover with CURE, Sid Sadler sat down to talk about the topic of Kidney Cancer Awareness Month and patient advocacy.

During Kidney Cancer Awareness Month, Sid Sadler, a patient advocate and survivor of kidney cancer, shared that there has been significant progress in the kidney cancer treatment landscape, translating to hope for patients, caregivers and survivors of this disease.

“So, if you are diagnosed and are listening to or reading this, it's not hopeless. There are many researchers, doctors, and institutions looking for a cure and have found very effective treatments, and even, dare I say, vaccines to treat patients,” he said in an interview with CURE.

Sadler sat down to discuss the topic of Kidney Cancer Awareness Month — which takes place every March — and the important role that advocacy plays in raising awareness and supporting patients. He even goes on to highlight many ways in which people can get involved to raise awareness.

Additionally, you can catch his insights on experience with kidney cancer, as well as facts and tips, in his recent Instagram Takeover with CURE!

CURE: You led a social media takeover with CURE on the topic of Kidney Cancer Awareness Month. What were you hoping to impart to the audience?

Sadler: One thing — not only in this context, but in social media in general, or when I'm doing any advocacy work — I try to do is show people what cancer is really like. We've done a poor job of portraying cancer on TV and in movies. Often, when people hear that I've had cancer, they ask, “Why do you have your hair?” or “Why don't you look sick?” You get those classic questions, and I don't necessarily blame people for asking them because that's all they know. They might not have a loved one who went through a cancer diagnosis. So, I try to show people that cancer can manifest in many different forms.

I also try to poke fun at myself or show the everyday things that people don't necessarily think about when going through a diagnosis.

Many patients seek online support, communities and different things where they feel like they're not alone. What advice would you give somebody who's a newly diagnosed patient who's seeking resources or connections?

The first piece of advice I give to people who are newly diagnosed with kidney cancer — because those are usually the people who reach out to me, perhaps finding me on social media — is to try not to Google too much. This is not only because it's overwhelming, but also because, scientifically and statistically, the numbers you see online are backwards-looking, not forwards-looking. You'll only see statistics from the past 10 or 15 years. We all know that cancer treatments are improving as we learn more, so those numbers are changing and have improved. That's my first piece of advice.

For someone interested in getting involved in advocacy or learning more about their disease, my second piece of advice is to check if their cancer center has any resources. See if where they're being treated offers resources. Often, these office visits are only 15 or 20 minutes and can feel rushed. It can feel surreal because you're sitting there, being told you have cancer, and you're thinking, “What?” Then, it's “Okay, see you later.” It's surreal because you expect a regular doctor's appointment with weight and temperature checks, and then they say, “Oh, by the way, you have cancer, and we're talking about prognosis and statistics now.” So, ask for resources, whether it's a therapist, someone to talk to, or a support group.

Specifically for kidney cancer, there are great organizations for young adults and kidney cancer patients and caregivers, such as the KCA [Kidney Cancer Association], with which I've been heavily involved, KCCure and KidneyCan. These three come to mind, and they all do excellent work in their own ways to advocate for patients and caregivers affected by kidney cancer. Reaching out to these organizations is simple. I know people who work specifically for each of them, and they try to make it as easy as possible for patients or caregivers to get involved because, ultimately, they serve the patients and caregivers. Without them, these organizations wouldn't exist.

Those are the three pieces of advice I give to newly diagnosed people: try to limit Google searches, even though it's tempting. Ask your doctors or cancer center about local or in-center resources, and get involved with organizations specific to your cancer, like the KCA, KidneyCan and KCCure.

What would be a key takeaway message from our conversation today that you'd want patients, and everyone else listening, to kind of be left with?

For kidney cancer, we are just beginning to see progress. For the longest time, for 20-plus years, the survival rate for stage 4 kidney cancer was not great. You can go online and see the numbers. While it's still not the best, we have greatly improved that number thanks to incredible doctors, researchers, scientists, caregivers and patients who have been willing to participate in clinical trials. I believe we are turning a corner in kidney cancer.

I don't like to use the word “cure,” and I don't know when that will be. I'm not a doctor, but I think the key message is that there are doctors, researchers and scientists who dedicate their lives to finding ways to cure this disease. So, if you are diagnosed and are listening to or reading this, it's not hopeless. There are many researchers, doctors, and institutions looking for a cure and have found very effective treatments, and even, dare I say, vaccines to treat patients.

On the advocacy side, if people are interested in getting involved, I say, do it. As I mentioned earlier, advocacy work isn't just online or social media or what I'm doing here. It can be many different things. It can be talking to people in your community, talking to another patient, or simply donating your time or money to an organization. Advocacy work has many avenues, so get involved if you're interested.

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