How do I find a doctor who specializes in rare FH-deficient kidney cancer?

Finding specialists for FH-deficient RCC can be challenging since it's such a rare condition, but there are steps that can help connect with the right expertise. Consider reaching out to major cancer centers or academic medical institutions that specialize in rare kidney cancers, as they often have physicians who work with unusual genetic subtypes or can connect with colleagues who do through tumor boards and research networks. It's encouraging to hear about the positive response to treatment and how much research has been done to understand this condition better - that knowledge will be valuable when discussing options with specialists.

Debra, Same diagnose for me. Only have left kidney ( lost right to “normal” RCC 25 years ago). My treatment is daily Cabometyx & 28 day Opdivo infusion. Many side effects & have had to stop & restart treatment twice. Had first scan at 4 months & good reduction of both kidney tumor & several lymph nodes. I would think that Hubby’s results at 2 months are very encouraging. And not having side effects is key to keeping his treatment on schedule. Give us periodic updates if you can. Best wishes. AJ