What I Wish I’d Known About Kidney Cancer
Advice for the newly diagnosed straight from people who have been there, done that.
For the 73,750 adults who receive a kidney cancer (or renal cell carcinoma) diagnosis every year, it can be a lot to take in. To help take some of the guesswork out of understanding what happens next with this chronic condition, we tapped a couple of patient advocates who have been through it themselves and have learned many lessons along the way. Here, their advice for people just beginning their kidney cancer journey, from where to seek financial help to insider-y post-surgery tips that will help make recovery easier.
What I Wish I’d Known: You Have Treatment Options
Peggy Zuckerman of Long Beach, CA, was diagnosed with stage 4 kidney cancer 18 years ago. She overcame it thanks largely to surgical removal of a mass on one of her kidneys. But in the beginning, she was scared. “You think, ‘I'm gonna die next year,’” she admits. While there are no guarantees of the outcome of any cancer, her advice is to focus on the fact that there are options—treatments include tumor ablation, kidney removal and transplant, immunotherapy, and targeted treatment drugs. Thanks to those advances, kidney cancer has a 75% five-year survival rate, according to the American Society of Clinical Oncology.
What I Wish I’d Known: Family and Community Support Is Crucial
While Tamara Y. Walker, of Athens, GA, was going through her kidney cancer journey (which included the removal of her kidneys followed by a transplant in 2014), her doctor encouraged her to move from Virginia to Georgia, where she had extended family. The move made her realize how right her doctor was, and credits her family's encouragement for getting her through her rough days. She now knows the power of community, whether it comes from family, church, or a local cancer patient support group, is key: “I believe that on any journey, you can't get there on your own.”
What I Wish I’d Known: You Can’t Blame Yourself
Any time you receive a health diagnosis, it can be easy to fall down the rabbit hole of obsessing over what you did that may have contributed—that was the case with Walker, despite the fact that her cancer was related to a hereditary condition, polycystic kidney disease—she wondered if she had done made her situation worse by ignoring her symptoms. “It took me a while to open up my mouth to share with the doctor the pain and fatigue I had been experiencing,” she explains. She “beat herself up” at the time for not speaking up sooner, but since then she’s learned to focus instead on the fact that she did the best with the information she had and followed her doctor’s orders.
What I Wish I’d Known: You Might Be Eligible for Financial Assistance
Due to a change in jobs, Walker started her kidney cancer journey without insurance. She made do by seeking help—not just from fundraisers organized by friends and family but also from her doctor. When she told the people at her doctor’s office about her situation, they let her know that they offered financial assistance based on income and a payment plan to help spread out her bills. She now advises cancer patients to talk to their doctors about options when they have trouble paying bills. She also suggests looking into financial assistance from kidney cancer patient charities like the American Kidney Fund, an organization that she serves on as patient ambassador.
What I Wish I’d Known: Being Organized Is Key
Now a kidney cancer patient advocate for the Society of Participatory Medicine, a non-profit dedicated to empowering patients to be more engaged in their care, Zuckerman says finding a way to keep her information at the ready is important for a smooth journey: “I tell people to get out your three-ring binder and ask for every bit of information about your health that you can.” Then from there, document all your tests, procedures, and information gathered at your doctor’s appointments. The idea is to have all your details on hand—in one place—for any new specialist you see along the way. The big binder technique also helps by giving you a place to keep all your questions handy for future doc visits.
What I Wish I’d Known: You May Have to Travel for Treatment
Both Walker and Zuckerman found that it took over an hour one-way to get to a specialist for their condition—and they’re not alone, especially when it comes to people who don’t live in big cities with dedicated cancer centers. As recently as 2015, The National Cancer Data Base estimated that more than 250,000 American cancer patients travel more than 40 miles to get treatment. Good to know!
What I Wish I’d Known: Other Patients Can Provide Comfort, Too
Zuckerman says that many patients—herself included—feel isolated after receiving a diagnosis. Ranking as the sixth most-common cancer for men, and the eighth most-common for women, according to the American Society of Clinical Oncology, kidney cancer is actually one of the rarer forms of cancer. She explains, “Everyone seems to know another woman with breast cancer, another guy with prostate cancer—but not kidney cancer.” She recommends finding an online support group of other people going through the same thing.
What I Wish I’d Known: You Need a Buddy for Big Appointments
Walker says one of her biggest regrets was going to her appointment to get her diagnosis by herself. “After the appointment, I just sat in my car for a good hour to seem like I just was sobbing for an hour," she says. "I wish I would have brought along a family member or a friend.” She now sees that having a person there to help you absorb information and offer a shoulder to lean—or cry—on would have provided big emotional benefits.
What I Wish I’d Known: A Post-Surgery Meal Plan Is a Must
In the days immediately following Zuckerman’s kidney surgery, the pain and general weakness she felt made standing over a stove impossible. In her case, her husband jumped in to make sure she had balanced, nutrient-rich meals, but if you don’t have a significant other with culinary skills, she says you may need to plan to have dishes in your fridge or freezer available for reheating or even consider booking a local ready-made meal delivery service if it’s in your budget. The amount of days you’ll need to plan for will vary depending on the type of surgery you have (radical, partial, or laparoscopic) so check with your doctor.
- Traveling for Cancer Care: CURE. (2016). “On the road to recovery: traveling for cancer treatment.” curetoday.com/publications/cure/2016/winter-2016/on-the-road- to-recovery-traveling-for-cancer-treatment