When Kidney Cancer Comes Back: Recurrence Questions

This page is for people whose kidney cancer may have come back after treatment. It covers how a recurrence is confirmed, what shapes the treatment plan, and what to ask your care team.

NCI says plainly that renal cell cancer can recur many years after the first treatment. That matters.

It means a new finding a decade after your nephrectomy (kidney surgery) is not automatically something else. It also means follow-up is a long game, not a two-year sprint.

A new spot on a scan needs to be explained before anything changes. NCI says tests are done to work out where the cancer has come back. Ask whether a biopsy (taking a small sample of tissue to check for cancer) is needed.

Ask what the radiologist actually wrote, not just the summary line.

NCI says treatment for recurrent renal cell cancer depends on where it has come back. That much is true. Cancer that returns in the kidney bed is a different problem from cancer in the lungs, bone, liver or brain.

But location is not the only factor. NCI says the treatment options depend on:

• The stage of the disease.
• Your age.
• Your general health.

Your own priorities matter too, so say what you want from treatment. NCI's health-professional summary describes several drug trials that enrolled people with clear cell kidney cancer. Ask whether your tumor type changes the plan. Ask where it is, and then ask what else is going into the decision.

NCI lists several first-line options for stage IV and recurrent renal cell cancer. Two immunotherapy drugs may be paired, as in ipilimumab plus nivolumab. Immunotherapy may instead be paired with a targeted drug, as in pembrolizumab with axitinib or lenvatinib, or nivolumab with cabozantinib.

Single targeted drugs are also on the list, among them cabozantinib, sunitinib and pazopanib. So is surgery to remove the kidney in some situations, and radiation to ease symptoms (palliative radiation). Elsewhere, NCI also names a focused form of radiation, stereotactic ablative body radiation therapy, for early-stage kidney cancer when surgery is not an option. Ask your team whether it could apply to you.

Read that as a list of options, not a menu you order from. Your team matches the options to you. Ask why one option fits you better than another.

• Is this a recurrence, or scar tissue in the old surgical bed?
• Do we need a biopsy to be certain before we change the plan?
• Where exactly is it, and does that put me in the stage IV group?
• There is only one spot. Can surgery or focused radiation treat it, instead of drugs?
• I had pembrolizumab after my nephrectomy. Does that change which immunotherapy you would use now?
• My kidney function is lower since surgery. Is contrast dye still safe for my scans?
• Which of the combinations on the NCI list fits me, and why that one?

NCI says a second doctor may agree with the first doctor or suggest changes or another approach. NCI lists several first-line options for stage IV and recurrent disease. A second opinion can help you compare them.

Your records, such as test results and scans, need to reach the second doctor. Ask your own team to send them.

NCI says a person can live with part of one working kidney. Ask what your current kidney function is. Ask whether it changes which scans are safe for you.

Recurrence is usually found on a scan, not by a symptom. Still, a few things should not wait for the next scheduled visit.

• Call 911 or go to an emergency department if you have sudden or severe trouble breathing, chest pain, a racing heart, or a seizure. NCI lists shortness of breath as a sign of spread to the lung. Go too for sudden severe back or side pain, or for new weakness or numbness in the legs or trouble controlling your bladder or bowels. Do not drive yourself.
• Call 911 or go to an emergency department if you have heavy bleeding in the urine with clots, or bleeding that leaves you faint or sweating.
• Call 911 or go to an emergency department if you suddenly cannot pass any urine.
• Call your care team right away if you have a fever. If you are on chemotherapy, CDC says 100.4°F (38°C) or higher is the point to call right away, day or night. Call right away too if you are on immunotherapy and get a new rash, diarrhea, cough, chest pain, or trouble breathing. ACS says to tell your team right away about anything new or unusual.
• Call your care team the same day if you see blood in your urine, or if urine turns smelly or cloudy, or it hurts to pass. Also call for pain in your back under the ribs that will not go away, a new lump or swelling in the back, under the ribs, or in the neck, or a new headache or dizziness. NCI lists blood in the urine, a lump in the abdomen, and a pain in the side that does not go away among the signs of renal cell cancer. If you are on chemotherapy, call right away, day or night, for burning when you pass urine or any other sign of infection, even without a fever.
• Call your care team within a day or two if you have new bone pain, a cough that does not go away, night sweats with no known reason, or weight loss you did not intend. NCI lists these among the signs of cancer or of cancer that has spread.

More on this stage: Local vs Distant Recurrence, Cancer Staging, Clinical Trial vs Standard Treatment, and Questions to Ask Your Doctor.

• NCI — Renal Cell Cancer Treatment (PDQ) Patient Version
• NCI — Renal Cell Cancer Treatment (PDQ) Health Professional Version
• NCI — Symptoms of Cancer
• NCI — Metastatic Cancer: When Cancer Spreads
• NCI — Finding Cancer Care (second opinions)
• CDC — Fever (for people getting chemotherapy)
• ACS — Immune Checkpoint Inhibitors and Their Side Effects