You are one of nearly 1,100 people worldwide who will hear these words today: You Have Kidney Cancer.
You are likely blindsided because kidney cancer rarely has symptoms – and when it does, the symptoms are similar to more common and less urgent conditions. Your cancer might have been discovered on a scan that was done for a totally unrelated issue. The doctor who told you about your diagnosis might be a physician that you have never met, such as an emergency room doctor. Or you might have just read about it on a radiology report without even having a doctor there to explain it to you. You feel like the floor just dropped out from under you.
Here are some other things you are probably experiencing.
Emotional Distress: The word cancer is terrifying. If you are like seventy percent of kidney cancer patients, you are experiencing extremely high rates of distress right now. Even though you might not know very much about your situation, even if your cancer is small and largely curable, worst-case scenarios are running through your mind. There is an extreme sense of urgency to take an action – any action – to confront this disease. You feel desperate.
Access Barriers: You need to find a specialist and to make additional appointments. But you don’t know exactly where to go. Do you need a surgeon? an oncologist? Both? Your general practitioner has referred you to a doctor in the same health network. But you don’t feel entirely confident about the recommendation. A friend has suggested that you go to a larger academic center, but you don’t know if your insurance plan will allow you to go there. Even if you can go to another center, you are terrified about how long the wait for an appointment might be. You feel paralyzed.
Information Gaps: Like most people, you search the internet for answers. But the volume of information is overwhelming. A typical search for kidney cancer yields 160 million results. It is impossible to know which sources are reliable, which sources are not reliable and which sources are just trying to sell you something. Some of the information you find seems to conflict with what you have been told by your doctor. Now you are feeling uncertain about the advice you are getting. You feel lost.
You have kidney cancer.
Today, is the first day of kidney cancer awareness month. Raising awareness about the complex problems that patients face, like emotional distress, access barriers and information gaps, is the first step toward improving care. That is what this month is all about.
You can help. Share this post. Follow KCCure through the month of March. Learn what patients experience, help raise awareness, support our mission.
