When Kidney Cancer Comes Back: Recurrence Questions

NCI says plainly that renal cell cancer can recur many years after the first treatment. That is unusual among cancers, and it matters.

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

Scar tissue sits in the surgical bed. Small lung nodules are common in people who never had cancer.

NCI's approach to a suspected return is to run tests to work out where the cancer has come back. Ask whether a biopsy is needed before anything changes.

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, and that much is straightforwardly true. Cancer that returns in the kidney bed is a different problem from cancer in the lungs, bone, liver or brain.

But location alone does not settle it. The cell type matters: most kidney cancers are clear cell, and the drug evidence is largely built on those, so a non-clear-cell tumour is a different conversation. So does your risk group, how fast the disease is moving, whether you have symptoms, what you were given before, and whether you are well enough for a combination.

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, and so is surgery to remove the kidney in some situations. Read that as a catalogue, not a menu you order from. The list mixes current standards with older agents now used in narrower circumstances, and it is not ordered by preference. Which of them fits you depends on the cell type, your risk group, your kidney and heart function, and what you have already had.

Surgery and radiation still appear on that list. A form of focused radiation called stereotactic ablative body radiation therapy is used in some cases.

• 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?

Kidney cancer has several first-line combinations and no single right answer. That is exactly the situation where a second oncologist may reasonably choose differently.

It is also worth it if surgery on a single recurrent spot is being considered.

Contrast dye is filtered by the kidneys. After a nephrectomy you have less filtering capacity.

Ask what your current kidney function is. Ask whether MRI or a non-contrast scan can do the same job.

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 difficulty breathing, chest pain or pain in the upper back, or a racing heart. The NHS puts those in its emergency group, and kidney cancer that has spread most often goes to the lungs. Go straight in as well for heavy bleeding in the urine with clots you cannot pass, for sudden severe back or flank pain, or for new weakness, numbness in the legs, or trouble controlling your bladder or bowels, which can follow spread to the spine.
• Call your care team the same day if you see blood in your urine, or if urine turns smelly or cloudy, if it hurts to pass or you suddenly need to pass it more often, if you have pain in your back under the ribs that will not go away, or if you find a new lump or swelling in the back, under the ribs, or in the neck. The NHS puts all of those in its urgent group, and NCI lists blood in the urine first among the signs of renal cell cancer. The NHS notes the same picture can be a kidney infection, which is itself serious if it is left.
• Call your care team within a day or two if you have bone pain that is worse at night, a persistent cough, a temperature that will not settle, drenching night sweats, or weight loss you did not intend. On targeted therapy or immunotherapy, report new diarrhoea, a skin rash, or breathlessness in the same window. These are the drugs listed above, and their reactions are handled faster when caught early.

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
• ACS — Living as a Kidney Cancer Survivor (Follow-up Care)
• NHS — Kidney cancer: symptoms
• NHS — Pulmonary embolism