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I always did well in high school and college when it came to grades. I studied hard. I was prepared as best I could be. One of the common themes for kidney cancer patients (maybe all cancer patients) is the anxiety of an upcoming surveillance exam. Generally, about two weeks before the exam date patients tend to get more anxious. More nerves. More questions. More need for reassurance. It's the waiting for a report that you know is coming due. A report card of sorts. Hopefully not a final report card. But your mind goes there. When I first sat (laid down) for my CT scan to verify whether I had kidney stones, my report card came back with an unexpected result. I had to doublecheck the answer. I was sure my test was mixed up with someone else's. I was expecting a zero for anything but a kidney stone sitting somewhere. Turns out I had a grade 3 tumor in one of my kidneys. That's not a good report. Nowhere close to an A. I had a lot of studying to do to fix this. Maybe I could take the test over again. Study harder. Pass with flying colors next time. My doctor said the score was final. No matter how many times I retake the test, the result would be the same. Damn.

I'm not a patient person. I am a patient, but that doesn't mean I'm patient. Waiting for the follow up surveillance exam (in two weeks) is what creates anxiety. Not just for me, but for other patient's in the same boat. It's like floating along with one paddle instead of two. Hard to navigate, hard to steer your mind in the right direction. It's the unknowing. I want to be all-knowing. As my Auntie Terry will attest to, waiting for 5 to 7 days to get the pathology report is nerve wracking and unsettling. That's why I write. To put my thoughts on paper. It helps to talk about it out loud. On a keyboard. That allows you to go back and make corrections. If only I could go back and erase the cancer. If only we mere mortals had the power. The Delete Key doesn't work for that. Pretty worthless key in that regard. I'm part of the KCCure (Kidney Cancer Cure) on-line support group. The group is on a Facebook board. Access is only for confirmed patients with kidney cancer (about 80% of its over 2,700 members worldwide). The other 20% are healthcare providers / professionals who are interested in kidney cancer. The group is very supportive. We all share our status and stories, look for common practices for our particular stage and grade of tumor, and receive a lot of positive feedback and thoughts. We need that. We get that. For kidney cancer patients (renal cell carcinoma - clear cell in particular), even though you have the entire kidney that cancer invaded removed, the cancer can show up somewhere else in the body later. It's still renal cell carcinoma - clear cell even though it shows up somewhere else in your body. The cancer cells traveled elsewhere. The border isn't closed at the kidney. It's wide open. That's where the worry comes from. Will it show up somewhere else?

Illustration by D. Bicker, pixabay.com When I searched the vast internet to learn more about patients with kidney cancer, I found that most patients who are diagnosed with kidney cancer are blindsided by it because kidney cancer rarely has symptoms. That was true in my case. Like many other cases, my cancer was discovered on a CT scan that was looking primarily to see where the kidney stone(s) was located. The secondary concern (a rule-out diagnosis if you will) was to look for anything more sinister. That begs the question...should total body scans or CT scans of the abdomen and pelvis be done more frequently to screen for kidney cancer in populations where kidney cancer is more prevalent? Early detection increases the likelihood of a better prognosis. But what are the downsides of scanning your body looking for something sinister? Do you really want to know what is growing or lurking in your body? It’s kind of like learning how sausage is made. After you do, you kind of wish you hadn’t. One downside is the unnecessary worry that can be created by seeing shadows within that are nothing to be concerned about. Another is the cost. Health insurance companies don't like to cover the cost of medical services that are not based on an indication to justify it. That makes sense to a point. The counterpoint to that argument is that detecting medical issues early can reduce the total healthcare costs in general. It's a preventative approach rather than waiting for a bigger shoe to drop. Another question to be asked is who would / should be tested for kidney cancer? Kidney cancer only makes up about 4 percent of cancer diagnoses in the United States (about 82,000 new cases each year). Worldwide it is even less than 4 percent. Does it make sense to test 100 percent of the population to detect the 4 percent who have kidney cancer? It doesn't seem cost effective. Unless you are the one with cancer growing in your kidney. The American Cancer Society tells us that most people diagnosed with kidney cancer are between ages 65 and 74. That is when patients are diagnosed with cancer. How long had the cancer been present before diagnosis? Kidney cancer usually doesn’t present with symptoms. That's when a CT scan (or MRI) needs to be done - years before the cancer is detected. For the population that is at higher risk. I was age 61 when the mass was detected, and it had been there between 5 and 14 years. Would a CT scan have picked up the mass when I was age 47 to 50? I’d like to think so. Kidney cancer is very uncommon in people younger than age 45. So, scanning for kidney cancer before age 45 would seem unnecessary. Maybe starting at age 45? Kidney cancer is about twice as common in men than in women and it is more common in African Americans, American Indians, and Alaska Natives. The only category I fit of these is being male. If you are a smoker, diabetic, or like to drink more than most, you are at higher risk of getting kidney cancer. None of these fit my case. Yet, I got renal cell carcinoma-clear cell. I wouldn't be on anyone's radar as a likely candidate for a positive diagnosis. I wouldn't fit the criteria for having a body scan to search for this nemesis. Truth be told, I’m not sure I would have signed up for one had it been offered to me anyway. But other people likely would. Like many kidney cancer patients, I had no symptoms. Had it not been for a kidney stone that was setting off alarm bells, I would not have had a clue there was cancer within. It's too bad our bodies are not transparent. It would make it so much easier to see what is going on. Probably best we don't have that close a view. As the saying goes, beauty is only skin-deep. Perhaps that fits here.

KidneyCouch Podcast - Around the Couch

KidneyCouch is proud to be an Affiliate Partner with the Kidney Cancer Association. About Kidney Cancer Association The Kidney Cancer Association (KCA) is an international non-profit organization that promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer. The vision of the KCA is to be the universal leader in finding the cure for kidney cancer. KCA's mission is to be a global community dedicated to serving and empowering patients and caregivers, and leading change through advocacy, research, and education. Knowledge is Power Learning about kidney cancer can feel overwhelming, but gaining knowledge is the first step to feeling more in control. The key is to educate yourself, ensure you understand your diagnosis, and explore your options. Go To Knowledge is Power Patient Stories Check out patient stories from individuals and loved ones who are dealing with kidney cancer. For individuals dealing with kidney cancer, hearing stories from those who have walked a similar path offers a powerful way to connect and feel less alone. Go To Patient Stories Strength in Unity KCA Affiliates / Partners KidneyCouch Podcast Episode Regarding the Affiliation Kidney Cancer Association Contact Information Website kidneycancer.org Email Patient Navigator Programs Donors

Partners and Affiliates of the KidneyCouch.com. Affiliates and Partners KidneyCouch is proud to partner with organizations who's mission is to bring awareness, education, support, and resources to patients, friends and family members, and caregivers that experience kidney cancer journeys. Everyone has a story to tell. A unique, personal experience that we want to bring an additional voice to. The affiliations that we have forged share the mission of KidneyCouch to bring support and healing - medically and emotionally - through education and awareness for patients experiencing kidney cancer personally or within their circle of friends and family. We are pleased that the following organizations have joined us around the Couch to advance this mission. Kidney Cancer Association The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer. KCA's vision is to be the universal leader in finding the cure for kidney cancer. Their mission is to be a global community dedicated to serving and empowering patients and caregivers, and leading change through advocacy, research, and education. Imerman Angels Imerman Angel's mission is to provide comfort and understanding for all cancer fighters, survivors, previvors and caregivers through a personalized, one-on-one connection with someone who has been there. Imerman Angels envisions a world where cancer is not a solitary experience. Future Partners KidneyCouch is reaching out to other likeminded organizations to form affiliations with. Reach out to us if interested!