IN THEIR WORDS

Rich Carr

Germ Cell Tumor At 26

I’ve always been a healthy, active guy. Growing up I played hockey, baseball and ran track. That’s why it was strange when, at age 26, I started to be really fatigued all the time. Also, around this time I would develop sudden bouts of nausea.

Then, I developed gout. Gout is an extremely painful swelling in joints. It’s typically found in people over the age of 55 and starts in the big toe. I was only 26 and it was everywhere- knees, elbows, fingers, toes, and anywhere else there’s a joint in bodies.  I saw my primary doctor and they referred me to a rheumatologist. They treated me with shots of cortisone injected directly into the affected joints.  I took anti-inflammatory pills by the fistful.  Gout is typically attributed to a bad diet and lack of exercise. Because of this fact and because of my age, my rheumatologist seemed to suspect my claim to eating right and exercising was untrue and that, perhaps, I wasn’t admitting to the behavior that causes 99% of gout cases.

You might be wondering at this point, why did I stick with a treatment for TWO YEARS that obviously wasn’t working? Well, growing up I was always told not to argue with people of authority- doctors, lawyers, teachers, and others. I was taught that they knew best and I shouldn’t even ask questions of them- “it’s impolite”, my mother told me. I was also embarrassed to be afflicted with a condition that my peers didn’t understand other than that their grandparents may have had it.  So even though I was angry and frustrated, I gritted my teeth and pressed on.

I was also embarrassed to be afflicted with a condition that my peers didn’t understand other than that their grandparents may have had it. 

One day when I was 28, I went snowboarding for the first time. (It was also the last time in my life- you’ll understand why soon.) I was sore and tired and I noticed a tiny bump appear under my skin, right below

my bellybutton. I knew this was probably not good so I went to my primary care doctor who diagnosed me with a hernia. I would have to get surgery on it but they told me I could put it on hold for a week or two. I went to Hawaii, where I proposed to my girlfriend (who is now my wife). When I got back, I met with the surgeon who ordered a CAT scan.

The day after the CAT scan, I stopped by the radiologist’s office on my way from a different appointment to check on my scan results, and it wasn’t good news. The radiologist showed me my scan and explained that the large white areas that I could see were a large tumor, not a hernia. The tumor had grown so big that it pushed through my abdominal wall, because it had no place else to go. It had partially crushed one kidney, invaded my vena cava, and had fingerlike extensions through my intestines. They said that it was likely a sarcoma. But wait- a sarcoma was cancer? How could I have that?!

It turns out that I had an extragonadal germ cell tumor. I would have to get a pretty extensive surgery called a Retroperitoneal Lymph Node Dissection followed by 6 brutal months of chemotherapy and radiation. The doctors gave me a 50% chance of survival. All of the health changes I had experienced- the fatigue, nausea, gout – they were all  pointing to the bigger overall issue, the cancer. My primary care doctor was stunned by my diagnosis- I’d imagine it was because he realized there WAS more to my symptoms than we had considered. I could have been diagnosed with a $10 blood test, but because cancer wasn’t on anyone’s radar, it went undiagnosed for almost two years.

I obviously survived the surgery and the treatment, and I learned some very valuable skills about how to advocate for myself that I didn’t have prior. And it’s good that I learned those skills, because 10 years later I again began experiencing some health changes again. This time I woke up one day and my right testicle had grown very large. I immediately went to the doctor and was diagnosed with testicular cancer within 24 hours of first noticing health changes. I was able to catch it early and the treatment, surgery, and outcome were a blip on my life’s journey.

In both of these circumstances, I had cancer. Waiting didn’t change that fact, but it did affect my treatment options. I’ve also experienced some health problems stemming from my first cancer that I wouldn’t have had if I would have been diagnosed sooner.

You are the only person that can speak up for your health. It’s okay to question the doctor, and even go and see a new one if you aren’t satisfied. You know you better than anybody.  It very well could save your life.

"I was taught not to question my doctor - and it cost me severely "

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