Understanding Your Diagnosis

Transcripts from Video

I was diagnosed in April of 2017. It was an incidental finding. I went to an ER for a ruptured appendix and they did a scan and they came in and said, “Yeah, you have appendicitis and by the way, you also have a large kidney tumor.” And it was just very jarring. I was just alone and in an ER.

Meryl Uranga

Patient Advocate

Diagnosis of any cancer, and kidney cancer no exception, incredibly stressful. It’s like a grenade goes off in people’s laps. So there’s a few things to know, especially when you’re preparing for appointments and when you’re looking to find the right opinion. And it’s whom to see, that’s number one, right? It’s important to understand that urologists or surgeons of the general urinary tract generally are the gatekeepers for this diagnosis, are the folks who usually make the diagnosis and who usually triage patients to specialists. 

Alexander Kutikov, MD, FACS

Fox Chase Cancer Center

I tell patients that when we see a renal mass, which means a growth on the kidney, it could be cancer, it may not be. Most of them are but there are a whole variety of types of kidney cancer. And in general when we see localized disease, surgery is certainly the first choice and generally curative in most patients.

Ari Hakimi, MD

Memorial Sloan Kettering Cancer Center

Urologic oncologists are folks who’ve done additional training over standard urology and have usually very deep expertise in kidney cancer.

Alexander Kutikov, MD, FACS

Fox Chase Cancer Center

And so we start with, how long was it there? And the answer is often, we don’t know how long these kidney masses are there, but when we’ve gone back and looked and published some papers on it, they are often there for somewhere between three and five years before the initial diagnosis. So I start by sort of going over the anatomy. I then go over sort of a timeline. I put it in perspective and I try to help them understand where they are in the spectrum of their disease.

Robert Uzzo, MD, FACS

Fox Chase Cancer Center

Obviously you want good imaging of the kidney, which is typically a contrast enhanced CAT scan or MRI. Ultrasounds are often the way these tumors are picked up initially. Often people will get ultrasounds for other reasons but we need good imaging that includes the blood vessels and other features around the kidney. So that’s the first step usually.

Ari Hakimi, MD

Memorial Sloan Kettering Cancer Center

And then if necessary, depending on how that looks, in most cases getting pictures of other areas like the chest to make sure that the kidney cancer hasn’t moved elsewhere. Beyond that, patients might get additional imaging that’s really guided by symptoms.

David Braun, MD, PhD

Dana-Farber Cancer Institute

Asking questions is so key. One of the things that I encourage in my first consultation is for patients to bring a list of questions with them. And I actually recommend that for future visits as well. It really helps organize thoughts. 

Sumanta Pal, MD

City of Hope Comprehensive Care Center

The internet is the Wild West. And one thing I would tell patients is something that indexes high on Google doesn’t mean it’s a reliable resource. You’ve got to be very careful. The National Comprehensive Cancer Network has very solid high fidelity resources, KidneyCAN obviously, other organizations, those are the resources you should seek.

Alexander Kutikov, MD, FACS

Fox Chase Cancer Center

Hearing the word cancer’s a really life changing and very difficult thing, but there’s also something empowering about the knowledge of knowing exactly what you have. And so having a firm diagnosis and that way, you’re built into a wonderful community of kidney cancer patients and advocates that can really help to be a level of support and also guidance in terms of treatments.

David Braun, MD, PhD

Dana-Farber Cancer Institute

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