Patient Story ID: 1419415

Background

In 2020, my husband was diagnosed with bilateral, multifocal (BMF) papillary renal cell carcinoma (RCC). The treatment recommendation was an immediate bilateral nephrectomy. As a caregiver to my father, a kidney transplant recipient, I worried about the quality of life my 39-year-old husband would face on dialysis. We independently sought a second opinion, shared our concerns, and a partial nephrectomy of both kidneys was suggested. Forty-two tumors were subsequently removed from both kidneys with no loss of kidney function. After our experience, I was curious what treatment options are presented to other BMF RCC patients and how oncologic risks vs renal preservation benefits are communicated.

Approach

I joined with KCCure (the Kidney Cancer Research Alliance) and used their social media platform to seek case studies for this evaluation. Three patients diagnosed at the outset with BMF RCC volunteered to answer a short survey about their counsel at initial diagnosis.

In all 3 cases, no one was advised to get a second opinion (although all 3 did). Initial treatment discussions focused heavily on oncologic risks vs renal preservation with renal preservation discussion occurring with Patient C but not with Patient A or Patient B.

Patient A’s initial treatment recommendation was a partial nephrectomy and a radical nephrectomy. This patient’s second opinion was 2 partial nephrectomies.

Patient B was told that the tumors were not cancer. This patient’s second opinion was a partial nephrectomy of 1 kidney and active surveillance on the other kidney.

Patient C’s initial treatment recommendation was cryoablation in 1 kidney and partial nephrectomy of the other kidney. This patient’s second opinion was active surveillance in 1 kidney and partial nephrectomy of the other kidney.

Maintenance

My husband’s rare, sporadic genetic mutation means he will remain on active surveillance and additional partial nephrectomies will be needed when tumors reach 3 cm. While he may face obstacles in the future, today he lives a normal life.

Quality of Life

Fear and uncertainty associated with cancer may overshadow nononcologic-related risks for BMF patients and their doctors. Without my knowledge of the harsh realities of dialysis and kidney transplant, we might not have sought a second opinion. True shared decision-making requires patients to be made aware of all treatment options and the associated risks.

In this limited evaluation of BMF RCC patients, treatment recommendations were inconsistent and risks associated with loss of kidney function were secondary to oncologic risks. Further research with a larger patient population is needed to evaluate how patients with BMF RCC are counseled and how shared decision-making can be improved.