Kidney Cancer Awareness Month Highlights Advocacy and Early Detection

March is Kidney Cancer Awareness Month, and voices like Sid Sadler are raising awareness: © Axel Kock - stock.adobe.com

March serves as Kidney Cancer Awareness Month, and is often a time in which patients, doctors and caregivers raise awareness about the disease, its symptoms, early detection, treatment options and the importance of patient support, according to the official American Cancer Society website, which goes on to add that the awareness month also encourages advocacy and research efforts.

Sid Sadler, a patient advocate and survivor of kidney cancer, became a kidney cancer advocate after his diagnosis at age 32, and was driven by the lack of representation for young adults within the advocacy space of this disease. The American Cancer Society website notes that most people with kidney cancer are older, with an average age of diagnosis at 65, speaking to Sadler's experience and feelings of being the youngest person in the doctor's office.

“I didn't see a lot of people out there that were my age or that looked like me that were talking about kidney cancer, and that inspired me,” Sadler emphasized in an interview with CURE.

In the interview, Sadler discussed his experience being a young adult with kidney cancer and the challenges that he faced, which included isolation, as well as difficulties in balancing treatment with everyday responsibilities.

CURE: What inspired you to become a patient advocate for kidney cancer awareness?

Sadler: There's kind of a shell shock right after your diagnosis, and I think people kind of go into two avenues; one is to try to forget about your diagnosis [after treatment] – and that's OK, there's nothing wrong with that — and some people dive into that advocacy space. For me, I already had a background in communications and social media, so that streamlined the process.

Also, for kidney cancer, my age group — I was 32 when I was diagnosed, [and am] 33 now — is fairly rare for kidney cancer. I didn't see a lot of people out there that were my age or that looked like me that were talking about kidney cancer, and that inspired me. Now, there are advocates that are young adults that are fantastic and [do] much better [and] bigger work than I do, but that's kind of what inspired me to put my toes in the water.

From your perspective, what are some of the biggest challenges patients with kidney cancer may face?

When you look at challenges, besides just the challenges of a cancer diagnosis — I think if somebody's reading this, they probably already know what the challenges of a cancer diagnosis entail, whether you're a caregiver or patient or know somebody [who has] a loved one that has a cancer diagnosis. However, for kidney cancer, specifically, it's still on the rare side of things. Eighty thousand-plus folks will be diagnosed with kidney cancer this year. That sounds like a lot of people, and it is. But in comparison with other cancers, it's still on the rare side.

You can sometimes face challenges when you're diagnosed, if you were maybe to see a doctor or an oncologist, that maybe is a general medical oncologist, as opposed to a genitourinary oncologist or somebody who specializes in kidney or genitourinary cancers. They are obviously going to be more up to date on standard of care, and they will also know about clinical trials that are happening at their institution or other institutions. I think that's probably one of the biggest challenges now. That's where advocates try to come in and try to educate folks.

I should also say that it does not mean that those general medical oncologists aren't good doctors or don't know about kidney cancer. [You] can very well be treated by a general oncologist, especially if you don't have metastatic disease or if you don't have an aggressive form of kidney cancer. But I think that's one of the challenges. Obviously, there are challenges as well [like] being a young adult with kidney cancer.

What are some unique difficulties that young adults may face after being diagnosed with cancer?

This is a challenge across the board with cancer. As I've said before, usually when I go into a urologist's office, I'm the youngest person there, and I'm often asked if I'm there for my grandfather or father, not as a patient myself. One of the biggest challenges is the feeling of isolation. Even though we try to do a good job with things like interviews, or other advocates doing interviews and sharing content online — whether it be memes, social media posts or other things — it can still feel isolating.

When you go to that doctor's office, whether it's your oncologist, your urologist or even a [support group], you're usually the youngest person there, especially if you're under 50 or 45. You rarely see two of us in the same room because, honestly, there aren't many of us. That feeling of isolation can be challenging. When you're talking about cancer as a whole and being a young adult, I think about the things that people don't consider, like coordinating with your job, your professional development and time off. Some people don't have the luxury of having a flexible employer, someone who understands that there could be a mild reaction to treatment or that you might need to take a day off. Those are things that people don't necessarily think about, and I think we're trying to do a better job of educating not only other people about that, but also educating doctors.

I love the physicians I have, but I also understand that they don't necessarily think about those minute details in every patient's life. We can't expect a doctor to not only be a brilliant physician with a great bedside manner, but also think about the nitty-gritty things that go on in each of their patients' lives. So, we try to do a better job of talking to doctors and informing them that these factors are part of patient care, not just the medicine, treatment or scans.

In regard to early detection, what do you think needs to change to ensure more people are diagnosed at an earlier stage?

My kidney cancer was found because I had one symptom: blood in my urine. That's a red flag, right? It signals, “Oh, we need to check this out.” A lot of times, kidney cancer, especially, is found incidentally. It might be discovered after a car accident, or [something that prompts] needing a scan. You get a scan, and they find a mass on your kidney. They ask, "What is this? Let's investigate further." But if you have symptoms like blood in the urine, pain or other unusual symptoms, talk to your doctor about it. I always tell people, second or third opinions are never a bad idea, whether you're already diagnosed or trying to figure out what's going on. Any doctor worth their merit will encourage a second or third opinion. If they don't, maybe it's time to find a new doctor.

I also know that this advice comes from a place of privilege, because I have a great relationship with my primary care physician and my doctors, so I feel like I can have that open and honest conversation. Not everyone has that relationship. But if you don't, I encourage you to find a doctor who listens to you and is willing to treat you on an individual basis. Because sometimes, and this goes back to doctors, people or doctors can be stuck in their ways, or they genuinely don't feel a CT or MRI is necessary. There are many stories of people who thought they needed a scan but didn't get one for years, and then eventually they did, and they found a mass on their kidney or colon cancer. This happens typically with young adults.

We believe, and the numbers indicate, that [the young adults] age group is being diagnosed more and more, but the numbers still point to folks 65 and older having a higher incidence of cancer. However, I think that paradigm is shifting a little. I think we are starting to realize that, with better imaging and testing, we are able to find cancer quicker and faster in young adults. I think that's a conversation that people need to be comfortable having with their doctors, whether they're looking to get diagnosed or trying to figure out what's happening.

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