Author: KCCure

A data void exists when there is a high level of demand for information but little information exists. If you or a loved one has been diagnosed with a rare form of kidney cancer – you have entered a “data void.” Two years ago, you had surgery for a large renal mass. When the pathology came back, “chromophobe renal cell carcinoma,” your doctor told you that you were lu...

When you wake up this morning, a calendar reminder pops up on your phone. You have an immediate sinking feeling. It’s two weeks until your scan. This is the first scan since you started adjuvant treatment. You feel good and haven’t had too many side effects. But in a weird way, that makes you wonder if the drug is even working. Some moments you feel confident and convinced that this scan will be c...

Stage 1 turns out to be Stage 3 You are home recovering from surgery when your pathology report arrives in your medical portal. What your doctor thought was a small, stage 1 renal cell carcinoma was actually a stage 3, grade 2, renal cell carcinoma. Even though the mass was small – less than 5 cm – it invaded the segmented veins – which means it is now stage 3. You don’t fully understa...

Since your kidney cancer diagnosis, you have been struggling emotionally. Your friends and family – the people you rely on the most – have responded in ways that you didn’t expect. Their comments are well intended – but they often come across as hollow and toxically positive. When someone says, “be strong!” – it makes you wonder if they think you aren’t being strong. The words “be posit...

Many patients will be told that they have localized kidney cancer based solely on imaging alone. This can give the impression that diagnostic accuracy of scans is higher than it actually is. While CT scans are predictive of renal cell carcinoma and are routinely used to recommend surgery – the only definitive way to know for sure whether a renal mass is cancer is surgical removal. As many as 20 pe...

Sometimes Angels Don’t Have Wings – They Have Paws Eleven years ago I was diagnosed with renal cell carcinoma. If you or a loved one has been impacted by cancer, I don’t have to tell you what that day was like. Almost to the day, Benny came into my life. He was small and all he wanted to do was be with me all of the time.  Since my initial diagnosis, I have endured five surgeries,...

In the United States, a rare disease is defined as a disease that impacts fewer than 200,000 people. In the European Union, it is defined as a disease that effects 1 in 2,000.  Kidney cancer patients know they have a rare disease because they hear this: “We hardly ever see this subtype of kidney cancer…”  “There are treatments we can try, but we don’t know if they will work for you.” Mos...