My Story

My name is Johnny Nelson and I live in Las Vegas, NV. Nine years ago my gastroenterologist told me I had stage III colon cancer. My family has a strong history of colon cancer and hereditary colon cancer (Lynch syndrome) from my mother.

I grew up in the “Four Corners” area of New Mexico next to the Diné (Navajo) reservation. I am Diné. My mother is a three-time cancer survivor: two-time colon cancer and one-time breast cancer survivor. Cancer has devastated my family and going through this experience has made me an advocate for screening and genetic testing.

After losing a sister and bother to colon and stomach cancer when they were both in their early 30s, I decided to be proactive in my screening. My first colonoscopy was unremarkable -- a benign polyp was found and removed. Although my doctor recommended I get another colonoscopy in 8-10 years, I was not comfortable with that length of time so I scheduled my procedures every three years. That decision saved my life...my cancer was found three years later during a colonoscopy.

Following my cancer surgery, my doctor recommended I see an oncologist for genetic testing. I soon found out I tested positive for Lynch syndrome.

My desire and passion is to raise awareness to my Diné people and all Native people. Some of my advocacy work includes Gathering of Nations Pow Wow, Las Vegas sign blue bulb event, Lynch Syndrome International board member, and board member of the American Indian Cancer Foundation.

Treat Your Body Like You Treat a Classic Car -- Stay on Top of the Maintenance!

I recall the words my oncologist said during my follow-up test results. He recommended I do six months of chemotherapy. Discovering I have cancer, and now have to do chemotherapy, on top of finding out my genetic condition puts me at a high risk of another cancer was scary. I asked my doctor, "What are we going to do if the cancer comes back?” He told me it’s not a matter of “if” but a matter of “when” in my condition. This was eye opening and shocking to me.

I find that men are reluctant to talk about the need for doctor visits, much less having a colonoscopy. Some men are adamant on performing preventative maintenance on their vehicles. But yet think nothing of performing preventative maintenance on their bodies. 

I often tell guys, “as a provider for my family, there is no worse feeling than laying on your back in a hospital bed looking up at your spouse and knowing there’s not a darn thing you can do about it!” It can be hard for me at times to do all my surveillance annually, but that’s the life of a survivor. Health is the greatest gift you can give your family. 

How have your cultural identities influenced your survivorship journey with colorectal cancer?

My parents divorced when I was very young. My mother remarried an Anglo man who raised our family off the Navajo reservation. Now that I think about it, we didn’t have health insurance. However, being Navajo, we did receive health care from the local Indian Health Services. IHS is operated by the U.S Department of Health & Human Services. It provides health care to members of federally recognized Native American Tribes and Alaska Native people.

As a young boy I recall waiting all day to see a doctor and sometimes had to reschedule appointments. Although the system was “free” it lacked individual attention and had limited specialized medical care. We were fortunate to live within 20 miles of the IHS hospital. I can’t imagine living more than one hundred miles from the nearest medical facility on the reservation as some of the tribal members lived and traveled. The Navajo reservation is approximately 25,000 square miles, the largest Indian reservation in the United States. It is about the size of West Virginia. Most of the roads are dirt and impassible pending weather conditions. Running water and the luxury of electrical power is nonexistent in most of the homes. Good healthcare is hard to get being faced with these obstacles. Specialized medical care and treatments can be even more difficult to get in a timely manner.        

What was your experience like first getting screened for colorectal cancer? What do you know now that you wish you knew then?

I was in my late thirties when I had my first colonoscopy. My screening was a result of the passing of my younger sister, who was in her early thirties, and the history of my mother’s first bout of colon cancer. My doctor told me he suspected we had a genetic condition but didn’t say what the condition could be. The colonoscopy found a polyp of my right side. Unfortunately, the type of polyp was flat and had to be removed surgically; thankfully it was benign. My recovery went well and the doctor recommended I have another colonoscopy in 8-10 years.

Thinking back now, I wished I had been more aggressive in questioning the doctor of his assumption of having a genetic condition. Since I didn’t know about my condition then, I fell into the thought of not worrying about it and trusted the doctor. Knowing what I know now, I think the doctor at that time would have had an ear full questions. My experience has made me very aggressive with my doctors. I believe you must be aggressive with your medical care. We pay physicians a lot money to diagnosis our medical issues and make recommendations. 

What types of treatment were you first offered? Were there any barriers in the way of getting access to the treatment you wanted?

I did six months of chemotherapy. I was fortunate to have a good oncologist who supported then and continues to support me now.

What are the specific treatments you have received over the course of your survivorship journey? Which treatments have been particularly successful from a whole-health perspective and why?

My survivorship journey began when my younger sister and brother passed away from colon and stomach cancer. I lost count of the many colonoscopies and endoscopies I had over the years since their passing. I had no idea what I’d be facing after my first screening. Rather than take the advice of getting my next colonoscopy in 8-10 years, I decided on my own to get my next one in 2-3 years. I continued this frequency until December 2011 when my gastroenterologist found stage III colon cancer. It was my 3^rd year from my previous screening. Screening saved my life!

A large mass was removed by resection. Unfortunately, I developed a blood infection which turned into a year of treatment. Once I was discharged from the hospital, it was recommended I see an oncologist who started me on six months of chemotherapy. Genetic testing showed I had Lynch syndrome. I continue my surveillance program of annual colonoscopies and endoscopies, dermatology and urology screenings, and annual follow ups with my oncologist. 

What side effects related to treatment have you experienced? What was done to help manage them?

I continue to have neuropathy in my hands and feet. Some feeling has come back and it doesn’t bother me too much.

What resources do you recommend for others who share a similar diagnosis and treatment course?

Since my experience started as a genetic condition, I would encourage a person who is experiencing similar diagnosis to know their family history. Screening and genetic testing have come a long way from the time my siblings passed.  

Relevant Resources

• AliveandKickn's Lynch Syndrome Registry
• Lynch Syndrome & Hereditary CRC Webinar
• Genetics Mini Magazine
• What to Do with a Limited Family History Podcast
• Family History Quiz
• Addressing CRC Screening in Indigenous Communities