Brief Background

In October 2020, my husband was diagnosed with bilateral, multifocal, papillary renal cell carcinoma (RCC) and an aortic root aneurism. In the spring of 2023, both conditions became surgical, which required considerable effort to determine priority and timing for 2 major surgeries. While we had multiple expert teams of physicians caring for my husband, they were all at different hospitals with unrelated subspecialties.

Approach

Monitoring scans in the spring of 2023 confirmed my husband required both an aortic aneurism repair and a partial nephrectomy within 6 months. Initial feedback from his physicians was that either surgery could go first, and 12 weeks was required between each surgery. Determination of timing and order of surgeries was left to me and my husband. We did not feel equipped with the necessary knowledge to make such a critical decision. Our decision-making burden was exacerbated by lack of communication and information siloing between hospitals.

To overcome these challenges, we made appointments for visits and further testing with each of the 4 specialists. At each visit, I brought notes and scans, provided each doctor with a summary of the information gained from other specialists, and shared our concerns and priorities. After providing this information and pressing physicians for their recommendation, we determined the best option was to complete the aortic aneurism repair first, followed by the partial nephrectomy.

Maintenance

My husband successfully had an aortic root aneurism repair, and then 12 weeks later had a successful left partial nephrectomy. The aortic aneurism repair should not require any additional intervention, but he will be regularly followed by cardiology. My husband’s rare RCC subtype requires him to remain on active surveillance, and additional partial nephrectomies will be needed when tumors reach 3 cm.

Quality of Life

While my husband’s physical quality of life during the last several months was impacted by the multiple surgeries, he is expected to make a full recovery. However, the information silos we faced prior to his surgeries required extensive navigation on our part, making the decision process arduous. And despite the success of his surgeries, we will still be left navigating his ongoing care in a disparate health system. At the time of RCC diagnosis, more than one-third of patients have registered comorbidities. The true burden that patients face when navigating multiple serious illnesses is understudied and deserves more attention to enhance communication, ensure shared decision-making, and improve care.