Tracie Titus, MHA, KCCure

In 2020, my husband was diagnosed with bilateral, multifocal papillary renal cell carcinoma with a volume of tumors too numerous to count. His initial treatment recommendation was immediate bilateral nephrectomies and dialysis. A second opinion from the NIH clarified his rare subtype and we learned that the indolent nature of his subtype meant that the risks of dialysis were far greater than the risk of metastatic disease. We also learned that new and existing tumors will continue to grow in his kidneys for his lifetime. With a better understanding of the disease, we chose active surveillance and partial nephrectomies when a tumor reaches 3 cm. Over the last 4 years, my husband has had 4 partial nephrectomies, which removed a total 60 tumors with no loss of kidney function. Due to the known need for multiple partial nephrectomies, the priority for each surgery has been to remove as many of the largest tumors as possible while maintaining as much kidney function as possible. Over time, it has become clear to us that the risk of losing renal function outweighs any risk related to metastatic disease and we have been become comfortable with living with active surveillance.

Research demonstrates that active surveillance is a safe and effective strategy for managing small renal tumors. However, as an advocate working in patient communities, it is clear that patients and caregivers are anxious about active surveillance in the context of small renal masses and it is a struggle for the field. Even in cases where doctors recommend active surveillance, it is still a struggle for patients to accept because of the emotional toxicity of the word cancer and the difficulty in living with known cancer inside your body. As a result, patients often select surgery even when the risks of metastatic disease are lower than the risks of surgery. Surgery is impactful to quality of life and not without risks; my husband has had complications after surgeries, which have impacted our daily lives for months beyond the surgery.

We live in an age of shared information; many people learn about their disease not from the internet but from others’ experiences in online communities. Patients with small, low-risk tumors are often interacting with patients who have more advanced and aggressive disease, which pushes patients further away from active surveillance. We need to find ways to shift the dynamic of information shared by increasing the diversity of voices including sharing the stories of more people living successfully with active surveillance. In addition to highlighting rare genetic syndromes (eg, Von Hippel–Lindau) where active surveillance is standard, we should consider working with the prostate cancer community and other communities where active surveillance has been standard to find ways to gain acceptance among the kidney cancer patient community and promote comfort and confidence in that treatment choice. We have an opportunity to show the general community that active surveillance is routinely used and is a safe and often the preferred choice. Active surveillance is not appropriate for all patients but, for patients where it is in the best option, we should be doing everything possible to help them feel empowered and comfortable to make that choice.