Wilm's Tumor: A Child Patient Becomes a Strong Adult

About Meheadshot-rogers

My name is Robin. I am 45 years old, a Vice President of Data Governance and Compliance at HealthGrades, and I have worked in the health care field for 23 years. In October 2011, I celebrate nine years of marriage to my best friend, John. We live in Lakewood, Colorado, with our two beagles. My favorite hobbies are camping, hiking, biking, and scrapbooking.

My hope and dream is to stay on a path of healthy living and to retire in the mountains of Colorado with my husband.

I have two big accomplishments that make me very proud. Of course, first and foremost is my 40th anniversary of surviving childhood kidney cancer. The other is having had the opportunity to work at M.D. Anderson Cancer Center in Houston. I had minimal contact with patients but had an opportunity to work with some of the finest oncology physicians in the world.

I am sharing my story with Better Medicine because I think personal stories are important to share, especially to those who might be experiencing what my family and I went through. Although it was 40 years ago and medicine has advanced, the feelings, and some of the aftereffects, do not change. Therefore, sharing how I approached adulthood and my medical needs is, I hope, of help to others.

About My Early Symptoms

At the age of 5, in 1971, I was diagnosed with a form of kidney cancer called a Wilm’s Tumor (this type of tumor affects only children). Although early symptoms are vague to me, my mother has provided more details. Mostly, I just wasn’t myself; I was not being a rambunctious 5-year-old. Unfortunately, I tripped while running up the stairs in our home. It is thought that my kidney burst at that time. The tumor was in my left kidney (I was lucky to have a left and a right), and there was an immediate need for surgery. The left kidney was removed. I then began aggressive treatment of chemotherapy and radiation.

My surgery was at Swedish Medical Center in Englewood, Colorado, and my treating urologist is a forever lifelong friend. He even attended my wedding in 2002! My treatment after surgery at Denver Children’s Hospital lasted almost two years.

When I Received My Diagnosis

I recall very little about how I felt about the diagnosis. I can tell you that being an adult now, I am glad I had my cancer diagnosis and treatment as a child. I think it would be more difficult to handle truly understanding what is going on and possibly trying to rationalize the pain. As a child, I was worried about missing kindergarten, not having a TV in my hospital room, and missing my big sister and parents at night. This disease was much harder on my parents. Realistically I was given a 50/50 shot at living, and that was with a lot of treatment. I am indebted to them forever, for making the difficult choice and for being by my side for many years of care.

What Caused My Kidney Cancer

I think it is natural for anyone who has cancer to either have self-blame or blame others. I believe most cancer survivors have a moment of “why me.” This was a traumatic time for me and my family. Very few records remain of my treatment, so I began research on my own. Working at M.D. Anderson Cancer Center at the time, I decided to take advantage of the expansive knowledge around me. I talked to one of the pediatric oncologists about my case and did research at the hospital library to learn that in one of my X chromosomes, the upper part of the X was missing. That’s it—that’s what caused the tumor. Nothing different could have been done by my parents or by me. It just happened…

About My Care Team

My care team was expansive. First and foremost were my parents. They were always there while I was in the hospital and for the following years of treatment and aftercare. My sister deserves a medal for being the best big sister in the world. I often wonder how she felt, knowing I was so sick and was taking away quite a bit of my parents’ attention. She was 8 at the time, so it couldn’t have been easy for her, either. My entire family and many friends were with me along this journey; many remember me as a bald little girl who refused to wear a wig! To them, I am grateful for the many years of support.

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