Steve Johnson and Debbie Donze

Steve was first diagnosed in 2012 with a mass on the left side in his 50’s. He underwent a left radical nephrectomy (the whole kidney was removed). He thought he was in the clear, but 3 years later he was diagnosed with a recurrence in retroperitoneum. He underwent a robotic assisted laparoscopic metastasectomy with Dr. Amr Fergany at Cleveland Clinic (where the sites were removed) and again he appeared disease free.

Unexpectedly three months later Debbie (Steve’s daughter) who was in her 30s. Went to the ER for abdominal pain. They got a CT scan and found a 4 cm mass in her left kidney. She was treated with a robotic partial nephrectomy, also by Dr. Fergany Since that time she has done well.

This may sound like a case of inherited kidney cancer, but in their case it most likely it wasn’t. The most common type of inherited kidney cancer is called Von Hipple Lindau(VHL). Since it is inherited in an autosomal dominant fashion someone in each generation usually gets kidney cancer along with some other tumors and cysts. Parents with VHL have a 50% chance of passing on the disease to their kids. The most likely explanation for this family is environmental contamination. They lived along the Ohio River near Parkersburg, WV where there was a known contamination of drinking water with the chemical C8, also known as perfluorooctanoic acid, which is a byproduct in the manufacturing of Teflon. Recently a lawsuit was settled with Dupont agreeing to pay 671 million to those who developed disease related to this chemical including kidney cancer, testicular cancer and other health problems with the thyroid and cholesterol. Residents in this area have about 7-8 times the levels of average Americans. The kidneys filter the blood and clean it, so they are susceptible to smoking, environmental contaminants and diet. Debbie was able to get compensation for her cancer case, but Steve didn’t apply in time. There is a recently released movie called Dark Waters if you want more information

You may have thought that Steve was done and had more than paid his dues, but unfortunately Steve had an additional recurrence in 2021, this time on the other side of his body. Fortunately he was able to undergo another robotic assisted metastectomy an is recovering well with no sign of disease and not taking any systemic therapy.