How to Find Support When You Have Metastatic Kidney Cancer

Nearly two years after he’d been treated for kidney cancer and felt like he was in the clear, Chuck Stravin received the news that some nodules in both of his lungs were growing at an aggressive pace. When those were removed and biopsied, results confirmed that his kidney cancer had become metastatic.

“Everything switched in that moment—the battle became completely different,” he recalls. “Before, we were focused on moving fast and being cancer-free, and then I had to flip a switch and slow down. I had to change my mindset, and I knew I couldn’t do that alone.”

When he was first diagnosed, Stravin had a few sessions with a social worker at the Dana-Farber Cancer Institute in Boston, where he was treated. But he knew that navigating metastatic kidney cancer would require a larger team to help him feel supported.

“I’m a classic type A person who sees things as black and white,” he says. “But metastatic cancer is all shades of gray when it comes to how you respond emotionally. It’s hard to process that, especially on your own.”

The American Cancer Society (ACS) estimates that about 82,000 new cases of kidney cancer are diagnosed each year. Around one-third of people affected will see their cancer spread to surrounding tissues or organs, which is called stage 4 or metastatic disease. The five-year survival rate fot these patients is around 15%, according to the ACS, though treatments and outlook are continually improving.

Feelings of distress and isolation are common with kidney cancer, especially if it’s become metastatic. A 2018 study in Therapeutic Advances in Urology found that people with the disease experienced high levels of anxiety, pain, sadness, worry, and sleeping difficulties. Another study, published in a 2016 edition of the journal PLOS ONE, found that when kidney cancer patients experience psychological challenges, it can affect their immune systems and physiology. For instance, someone might report more chronic pain or catch colds more easily when they feel unsupported.

That means getting the right resources isn’t just essential for mental balance; it could also improve symptoms to some degree. Here are tips from Stravin and other kidney-cancer specialists about how to find support and make the most of it.

Identify what you need

Having lived with metastatic kidney cancer for six years, Stravin knows that what he needed in the beginning is not the same as the support he cultivates now. In the first few weeks, for example, he spent time talking with family, friends, his oncologist, and social workers about how to pivot away from constant anxiety. What he needed was to set meaningful goals—he chose “being able to see my daughters graduate from college” as the main one—and to focus on everyday joys that refreshed his optimism. That doesn’t mean it was easy, he adds, but it did give him a framework for making a huge mental turn.

“I could tell that I needed to shift away from thinking about what’s next, always holding my breath before the next scan results, always wondering about clinical trials,” he says. “I never would have admitted back then that my cancer was incurable. That would have felt like giving up. But over time, I’ve come to see the enormous value in changing my focus.”

Rather than just asking for support in general, Stravin has learned to be specific in what he needs. For example, sometimes he just wants to vent and needs a listener; other times he wants to pray and asks family to join him. Increasingly, he appreciates being able to joke around and laugh. “That’s the best remedy for coming to grips with this lousy situation,” he says. Taking some time to think deeply about what would be most nourishing for emotional health at the moment—with the understanding that tomorrow’s needs could be different—is very helpful when considering what type of support is best for right now, he suggests.

Read More: Coping With the Side Effects of Kidney-Cancer Treatment

Start with your doctor

When Stravin’s daughter got married, his oncologist at Dana-Farber, Dr. Toni Choueiri, photobombed every group shot, and the family often jokes about their “bromance” and how they can talk for hours. Not every doctor-patient relationship will have that kind of chemistry, but it should have a deep foundation of trust that allows patients to be more open, Choueiri says.

“In any specialty, the way a doctor and patient connect is important, but in oncology it’s especially crucial because patients are feeling very vulnerable,” he adds. “Your doctor should be your quarterback for care, and because of that, there needs to be a lot of confidence and communication.”

When looking for support with metastatic kidney cancer, Choueiri suggests beginning with your oncologist, because that doctor will already have experience with what’s emotionally challenging for you. Your oncologist will also know what’s coming up in terms of important scans, family dynamics, clinical trial options, and side effects. All of these can be variables in helping you find the right kind of support, he says.

Tap into your larger care team

Social workers with oncology experience are essential for a care team, Choueiri says. These professionals “are trained to understand patient needs on multiple levels, and they can act as a bridge to other resources,” he adds. For example, social workers might connect a patient with a hospital system’s financial department, since paying for care can be a source of anxiety.

Choueiri also suggests meeting with a psycho-oncologist, a specialist who can address the intersection of emotional, social, behavioral, and physical aspects of metastatic cancer. Meeting with a therapist, psychologist, or psychiatrist can help you talk through feelings about diagnosis, treatment, changing family relationships, concerns about the future, anxiety, or depressive symptoms. These mental-health professionals can provide the tools necessary to cope with stress and uncertainty.

Sometimes, the support you need isn’t directly emotional but still affects your mental health, adds Dr. Jennifer Linehan, an associate professor of urologic oncology at the Saint John’s Cancer Institute in California. For example, having trouble sleeping or difficulty controlling pain can lessen one’s emotional resilience. In such cases, getting support would mean trying different treatment options that can provide rest and relief.

Add virtual and in-person support to the mix

Whether you’re feeling fatigue from a recent treatment, live too far from your cancer center for frequent visits, or just want to talk to a friend in the middle of the night, online support groups tend to be key for helping patients feel connected.

These have come a long way in just the past five years, says Dr. David Nanus, a medical oncologist and specialist in genitourinary cancers at Weill Cornell Medicine in New York City. COVID-19 restrictions shut down many in-person support meetings, he says, and even though those have slowly returned, the breadth of online options developed in the interim have been a boon, Nanus says.

“There are so many groups online now—the evolution has been very rapid in the last couple years in particular,” he says. “The advantage is that patients can meet people from all over the country or even the world, and they can feel a connection any time.”

In addition to talking about emotional struggles, frustrations, and joys, these groups often share information about the latest research developments, Nanus says. They might track certain clinical trials or promising therapies that are working through the U.S. Food and Drug Administration approval process. Even if those treatments are years or decades away, being able to discuss them in a support group can be empowering, Nanus says.

“A big part of metastatic kidney cancer is feeling a loss of control, and people can feel helpless because of that,” he adds. “When they can have a discussion with someone else in a similar situation and talk about potential progress, it absolutely makes them feel more involved in their care.”

To find groups that might be appropriate, consider options such as those hosted by the Kidney Cancer Association, Smart Patients, and KCCure Kidney Cancer Patient Support Community. Also, ask your care team if there’s a virtual or in-person group that’s part of the care center. Many cancer centers have these groups, both for patients and caregivers, and may host cancer seminars as well, where you can meet other patients and learn about treatment options.

Read More: 7 Myths About Kidney Cancer, Debunked

Consider advocacy efforts

One way to broaden knowledge of available groups and resources is to become a voice for progress in cancer research and care, Stravin suggests. A few years ago, he became an active participant in KidneyCan, a nonprofit focused on education and advocacy, and now helps lead the New England delegation. That allows Stravin to connect with legislators and researchers, as well as other patients.

The effort helps him feel like he’s contributing to greater awareness about kidney cancer, and supporting others while being supported himself.

“I’ve developed relationships with other patients through KidneyCan, and we discuss the tough stuff together, like how to talk to your kids about the cancer progressing, or end-of-life decisions that should be made sooner rather than later,” Stravin says. “Also, being an advocate gives me a sense of purpose, which can sometimes be hard to have with metastatic cancer.”

Combining all these resources—in-person support from his care team and family, advocacy efforts that drive his optimism, and virtual connections with his KidneyCan group—has helped Stravin navigate his cancer.

“I think cancer still has a stigma attached to it, and I know it can be difficult to open up and talk about it,” he says. “But connecting with others and getting all these emotions out there is a huge part of dealing with the mental aspect of metastatic cancer.”