Learning you might have cancer is a moment no one prepares you for. Maybe you noticed back pain, or it came up during a routine scan. Now, your doctor says it could be kidney cancer — specifically, renal cell carcinoma (RCC). What happens next?

In this article, we’ll cover everything you need to know about renal cell carcinoma. We’ll discuss how it’s diagnosed, what symptoms you might have, what treatment options are available, and what your prognosis (outlook) might look like. Whether you’ve just been diagnosed or are waiting on test results, knowing what to expect is the first step.

Symptoms of Renal Cell Carcinoma

Many people with early-stage RCC don’t notice symptoms at first. Often, RCC is found by accident during imaging tests for other unrelated health conditions. However, as the tumor grows, symptoms are more likely to pop up. When symptoms do appear, they might include:

• Blood in the urine (hematuria) — This may look pink, red, or brown, sometimes described as tea-colored.
• Persistent pain in the side or lower back that isn’t from an injury
• Pain between your ribs and hips (flank pain)
• A lump (mass) on your side, belly, or lower back
• Severe tiredness (fatigue) or weakness
• Unexplained weight loss

Enlarged veins in the scrotum (scrotal varicoceles) may also be a sign of renal cell carcinoma.

Around 33 percent of people with kidney cancer may also have symptoms of paraneoplastic syndrome. This happens when the kidney tumor releases chemicals that affect how your other organs work. Possible paraneoplastic signs and symptoms can include:

• Low red blood cell count (anemia)
• Liver problems
• Fever
• High calcium levels (hypercalcemia)
• Weight loss or muscle wasting (cachexia)

If you notice any of these signs or symptoms, talk to your healthcare team right away. They can order tests to see if your symptoms are caused by cancer or something else.

Diagnosis of Renal Cell Carcinoma

If your doctor thinks you might have renal cell carcinoma, they’ll start with a physical exam and ask you questions about your symptoms and family history. Some people have risk factors like smoking, high blood pressure, obesity, or workplace exposure to certain chemicals, like asbestos and cadmium. Others may be more likely to develop RCC due to certain genetic conditions, like von Hippel-Lindau disease, Birt-Hogg-Dubé syndrome, or tuberous sclerosis.

Blood and Urine Tests

Lab tests are often the first step in checking for RCC. These include blood tests and urinalysis (urine test). Blood tests help your doctor check your kidney function and overall health. They can also reveal signs of anemia or high calcium levels and measure how well your kidneys are functioning.

A urine test can detect blood you can’t see. Even if your urine looks normal, there can still be microscopic amounts of blood. This is one of the most common signs of RCC. Urine tests can also find signs of infections or other problems.

Blood and urine tests can’t confirm a cancer diagnosis. However, they give healthcare providers important clues. These results help decide whether you need more tests and, if so, which imaging tests to order next.

Imaging Tests

Imaging tests are some of the most important tools for diagnosing RCC. They take pictures of the inside of your body to help your doctor see the kidneys and nearby areas.

A CT scan is often one of the first choices. It uses X-rays to take detailed pictures of your abdomen (belly) and kidneys. It can show the size and location of a renal mass (kidney tumor). If your healthcare provider wants to get a better view of the blood vessels near your kidneys, they might order a special kind of CT scan called CT angiography.

If a CT scan isn’t safe for you — for instance, if you’re allergic to the dyes used with them or have poor kidney function — your doctor may recommend an MRI instead. MRIs use magnets instead of radiation, but they can still provide detailed images. MRIs are also safe to use during pregnancy because they do not emit radiation that can harm the baby.

An ultrasound is another type of imaging test that can be used. Ultrasound can show whether a lump is solid or filled with fluid. This helps doctors tell the difference between a tumor and a cyst, which is a fluid-filled sac that is usually benign (noncancerous).

Other tests, such as a chest X-ray, can be used to see if the cancer has spread to the lungs or nearby lymph nodes. A PET scan can also be used. PET scans evaluate the metabolic function of a tumor to see if it takes a lot of sugar, which is a sign of a possible malignancy. They are usually done alongside a CT scan for better detail.

Biopsy

In a biopsy, doctors take a small tissue sample from your kidney to check for cancer cells. It isn’t always needed, but it can be useful if imaging tests don’t give a clear answer. The most common method is a needle biopsy. During this procedure, you’ll receive numbing medicine and the healthcare provider will use a thin needle — guided by a CT scan or ultrasound — to take a sample from the kidney. This sample goes to a lab, where a specialist looks at it under a microscope.

A biopsy can confirm whether you have renal cell carcinoma and what type it is, such as clear cell or papillary RCC. This helps your doctor understand how the cancer might behave and what treatment may work best. In some cases — especially when surgery is already planned — a biopsy may not be necessary.

Staging and Grading Renal Cell Carcinoma

After you’re diagnosed with renal cell carcinoma, your doctor may run more tests to learn how far the cancer has spread and how aggressive it might be. This helps them build the best treatment plan for you. The process typically involves two important steps: staging and grading.

Staging describes how large the cancer is and whether it has spread to other parts of the body. It’s important to know whether the cancer is limited to the kidney or has spread to other parts of the body, such as the lymph nodes, nearby blood vessels, or adrenal glands. Further testing using a CT scan, MRI, X-rays, or bone scan may be used to find out. Stages range from 1 (early) to 4 (advanced or metastatic). Higher stages mean the cancer is larger or has spread (metastasized).

Grading describes how abnormal the cancer cells look under a microscope. This is determined through a biopsy of the cancer cells or after surgery. A low-grade tumor looks more like normal cells and may grow more slowly. High-grade tumor cells look more unusual and may grow or spread more aggressively.

Knowing your stage and grade helps your doctor predict how the tumor may behave in the future. It also guides choices about surgery, immunotherapy, and other treatment options.

Next Steps After a Renal Cell Carcinoma Diagnosis

Once your tests are done and your RCC is staged and graded, your healthcare team will talk to you about cancer treatment options. Your team might include a urologist (urinary and kidney specialist), an oncologist (cancer specialist), or other healthcare professionals. Together, you’ll create a care plan that takes into account how advanced the cancer is, your overall health, and your personal treatment goals.

For early-stage RCC, surgery is often the first step. This may involve removing only the tumor (a partial nephrectomy) or removing the whole kidney as well as nearby tissues (radical nephrectomy). If surgery isn’t possible due to your age or other health conditions, minimally invasive options may be used. For example, there are some approaches that can shrink the tumor with extreme heat or cold, called cryoablation or radiofrequency ablation. In some cases, radiation therapy may also be used.

If the cancer has spread, you may need systemic therapy, which works throughout the whole body. Immunotherapy and targeted therapy can both be effective approaches. These treatments help your immune system fight cancer or block specific signals the tumor uses to grow and spread. The type of immunotherapy or targeted therapy you receive depends on the subtype of your cancer as well as other unique features of your tumor. Immunotherapy and targeted therapy can also be combined for more effectiveness.

In some cases, you may be able to try out new treatments still being studied by taking part in clinical trials. If you’re interested in learning more, talk to your healthcare team or go to ClinicalTrials.gov and search for “renal cell carcinoma.”

Follow-Up Care and Monitoring

Even when kidney cancer treatment is successful, regular follow-up is important. That’s because RCC can sometimes come back, even years later. Your risk of recurrence (the cancer returning) depends on your cancer’s stage and grade, but regular checkups can help catch any problems early.

Your healthcare team will help create a monitoring schedule for you. This may include physical exams, blood tests, and more imaging tests. These tests check for signs of cancer spread or new kidney tumors and can also help monitor your kidney function, especially if one of your kidneys was removed during a nephrectomy.

Talk With Others Who Understand

MyKidneyCancerTeam is the social network for people with kidney cancer and their loved ones. On MyKidneyCancerTeam, members come together to ask questions, give advice, and share their stories with others who understand life with kidney cancer.

Have you or a loved one been diagnosed with renal cell carcinoma? What tests led to your diagnosis? Share your experiences in the comments below, or start a conversation by posting to your Activities page.