top of page

What is Juvenile Renal Cell Carcinoma?

This is a cancer of the kidneys that starts in the lining of very small tubes (tubules) in the kidney.  The annual incidence rate of juvenile renal cell cancer is approximately 4 cases per 2 million children.  The kidney tumors can spread to the lungs, bones, liver, and lymph nodes and often has spread before the diagnosis is made.  Stephanie was diagnosed at a Stage IV (which is the highest progression stage of cancer), and the cancer had spread from her kidney to various lymph nodes.

How is this different than average renal cancer?

Renal cancer usually afflicts Caucasian and African-American males between the ages of 50-70.  Renal cancer is typically very silent, and patients do not know until the cancer has spread.  Chances of increasing your risk of kidney cancers are the following example issues: smoking, high blood pressure, dialysis treatment, and family history of the disease.

​

Juvenile renal cell carcinoma usually afflicts older children and young adults, predominantly girls.  Typically, none of the issues mentioned that causes renal cancers to occur in adult men are reasons for juvenile renal cell carcinoma.  Stephanie did not smoke, had no history of high blood pressure, never went through dialysis treatment, and has no family history of renal cancer.

What causes Juvenile Renal Cell Carcinoma?

As stated, there is little research done and minimal information known about Juvenile Renal Cell Carcinoma.  Stephanie’s condition occurred due to chromosome translocation.  The proceeds of this foundation will go towards furthering the research into this cancer through the foundation that Dr. Tannir began at M.D. Anderson.

What treatments are possible for Juvenile Renal Cell Carcinoma?

The primary treatment includes total surgical removal of the kidney and any afflicted lymph nodes.  Then, follow up with chemotherapy or radiation to kill any dormant carcinoma cells.



However, this treatment method cannot be applied to metastatic patients.  Since little is understood about this cancer, the treatment method is to try an assortment of chemotherapies and radiation treatments.  Over the course of Stephanie’s treatment, she tried an unusually high number of different chemotherapy medications and radiation options.   Even within the last month of her life, Stephanie begged Dr. Tannir to try one more chemotherapy.

​

As of date, there is no successful chemotherapy or treatment method for metastatic patients.

What is the life expectancy for a person diagnosed with Juvenile Renal Cell Carcinoma?

Stage IV diagnosed patients only have a 23% survival rate, and rarely live longer than 2-5 years after diagnosis.  Stephanie miraculously survived as a fighter for over 6 years.

How did Stephanie discover her diagnosis?

Stephanie developed a tough mass on the left side of her shoulder (area where a lymph node is located), which restricted her from turning her neck properly.  A biopsy was taken, which detailed how her diagnosis of Juvenile Renal Cell Carcinoma had metastasized from her kidney to her lymph nodes.  The cancer eventually spread even further.

How do we become more proactive about cancer awareness for ourselves?

Here are a few general every day steps to help lower your risk for cancer, as according to the American Cancer Society.  However, keep in mind that these are only tips and the effectiveness does not affect every individual.
1. Get regular checkups with your doctor.
2. Control your weight.
3. Exercise regularly.
4. Eat healthy.
5. Avoid smoking.

bottom of page