6 Steps to Take After a Kidney Cancer Diagnosis

If you’ve been recently diagnosed with kidney cancer, you’re not alone: More than 81,000 people are expected to be diagnosed with kidney cancer in 2023, according to the American Cancer Society (ACS). And if you feel overwhelmed by your diagnosis, it’s important to keep in mind that this is a normal reaction.

“A kidney cancer diagnosis is really like a trauma,” says Evan T. Hall, MD, an oncologist who specializes in skin cancer and kidney cancer at the Fred Hutch Cancer Center and an assistant professor at UW Medicine in Seattle. The toughest period can be right after diagnosis, he says, when a person’s care is being organized and the treatment plan is being finalized. “That time between when you know that something’s wrong and when you know exactly what the plan is to do about it, it’s not a very comfortable feeling,” he says.

Recognize that this is a major life event, and allow yourself the time and space to process the news. Keep in mind that there are several things you can do now to take control of your condition and play an active role in getting the information, treatment, and support you will need as you navigate the challenges to come.

Ways to Prepare for Kidney Cancer Management and Treatment

Here are some steps you can take now to ready yourself for kidney cancer treatment and what you can expect in the weeks and months ahead.

1. Read everything you can about your particular kidney cancer. Cancer is first classified by stage, from 1 (earliest) to 4 (most advanced). “Cancer stage is largely based on the size of the tumor, how it involves the kidney and the area right around the kidney, and the presence of it spreading somewhere else,” Dr. Hall says. Kidney cancer is also defined by type: About 9 out of 10 cases of kidney cancer are renal cell carcinoma, according to the ACS. “When people go online and read about kidney cancer, that’s often what they find information about,” Hall says. The treatment your doctor recommends will depend on the type of kidney cancer you have, how advanced the disease is, your overall health, and other factors. That’s why understanding the details of your kidney cancer will be essential to making informed choices about your treatment.

2. Learn how to identify reliable sources. As important as it is for you to learn about kidney cancer, it’s even more crucial to choose reliable and trustworthy sources of information about your disease that provide well-sourced facts. This is especially the case for kidney cancer treatment, which has undergone tremendous progress in the past few years. As one study noted, newer medical and surgical advances have been able to improve the prognosis for people with advanced kidney cancer. “Some patients on treatments like immunotherapies can live for many years, which wasn’t really likely to happen before,” says Hall. Some good places to start your research include the National Library of Medicine’s MedlinePlus database and the ACS, both of which provide information about kidney cancer and list other good sources of information. If you find any information you’re not sure about, Hall recommends writing down the source and when it was published and asking your doctor about it.

3. Understand who will be on your care team. Who is on your treatment team will depend on how advanced your cancer is and how it will be treated. If it’s in the early stages, a surgeon will most likely remove part or all of the affected kidney. If the cancer has spread beyond your kidneys, you’ll most likely be referred to an oncologist. According to the ACS, you may also have nurses, psychologists, nutritionists, or other specialists on your care team.

4. Learn about your treatment options. For early-stage kidney cancer, treatment tends to be straightforward. “For stage 1 and 2 patients, it’s often just surgery, and then that’s it,” Hall says. Although you may have a follow-up plan with periodic scans, you may not need any other medication or treatment. In comparison, if your cancer has spread beyond your kidneys, treatment tends to be more involved. While surgery may still be necessary, immunotherapy medications and targeted drug therapies will also be considered. “Immunotherapies and targeted therapies are usually used one at a time, or in some type of combination, for the treatment of people with advanced kidney cancer,” Hall says. Radiation may also be used in some cases, such as when a person is not healthy enough to undergo surgery, according to the ACS.

5. Rally your (emotional) troops. Depending on the type of treatment you have and how long it lasts, you may experience side effects such as lack of appetite, weight loss, diarrhea, and fatigue, according to the National Cancer Institute. Because these symptoms can interfere with your daily life, it’s good to have at least a few trusted loved ones to help you with chores or child care. Not only that, having loved ones to share your ups and downs with can make a big difference in coping with the stress and uncertainty you may be experiencing. “I think it’s sometimes harder to go it alone than to have at least a friend or two who knows what’s going on,” Hall advises. You may also find it helpful to join a kidney cancer support group, which can be especially good for sharing information and discussing treatment options. “A lot of times, connecting with other patients who are going through the same thing, that’s really helpful,” says Hall. The Kidney Cancer Association and KCCure are two resources that provide information about online support groups, or you can ask your doctor to suggest local, in-person groups.

6. Maintain your health. If you practiced healthy routines, such as getting regular exercise and eating a healthy diet, before your diagnosis, try to go back to that good self-care as much as you can during and after treatment, says Hall. “As much as possible, feel empowered to continue on your normal routines,” he says. “A kidney cancer diagnosis doesn’t necessarily have to change everything.” Hall also advises taking advantage of the professionals on your care team, particularly a dietitian for nutrition advice. And if sadness or anxiety about your diagnosis is impacting your daily life, including your sleep, meeting with a social worker or mental health professional can be beneficial. “Find out what resources are available where you’re getting care and make use of them,” Hall says. “They’re there to help you.”

As you prepare for treatment, focus on the fact that your care team will do everything they can to treat you successfully, regardless of your cancer stage. “Even for people with advanced disease, there’s still a very real place for hope now,” Hall says.