Ronald Bye, testicular cancer survivor

"Although I am ashamed to say it, I spent 30 years silent about my experience with cancer."

I am a 32-year survivor of stage II pure embryonal carcinoma of the testis with vascular invasion. I was diagnosed in 1975 at the age of 20 and was not expected to live. I was given a 50% chance of two-year survival and a less than 10% prognosis of five-year survival. One of my doctors said he knew of one patient with the same pathology as mine who lived.

Although I am ashamed to say it, I spent 30 years silent about my experience with cancer. At the time I was diagnosed, no one discussed cancer. Period. Plus, I was a 20-year-old male, and there was a perception that testicular cancer had significant sexual and virility implications. I had deep emotional scarring. I simply locked it away and told very few people in my life. On the rare occasion that someone found out I was a survivor (that term was not used back them) and asked what kind of cancer I had, I would usually respond "abdominal" and leave it at that. That is not entirely incorrect, but obviously that was not the primary site.

Why did I keep silent for 30 years? That's difficult to describe. It was a combination of several factors. First, cancer was just not talked about in public. And it was also, to some degree, self-protection; if I did not talk about it, it was a bit like it had not really happened. But it was always in the back of my mind. Would it return? And if it returned, could I deal with the treatments again? Could I survive it a second time?

I was not afraid of death; I was afraid of the process of withering away and dying. The pain, the violence, the horror of the surgeries and treatments, and the complete and total loss of control…those were the things that haunted me, because I had no outlet for them. So, to some degree, if I did not talk about them they did not exist. Denial at its best! But by not talking about it and not dealing with it, I was unable to truly heal from my cancer experience. I did not really begin to heal until I began to face it and talk about it.

As for my epiphany, I suppose it built over a number of years as I became more self-aware. For many years I could not and would not allow myself any joy. I struggled a great deal to find happiness. It wasn't that I was an unhappy person, yet I was not really happy, either. I worked, and that was pretty much all I did. I worked 60 to 80 hours a week for years and went 10 years without a vacation of any kind after my cancer. That was what kept my sanity. Over time I began to question myself, my own happiness and my worth. I began to have a feeling that I should be doing something to give back.

Then at my 50th birthday and 30th cancer anniversary, I became even more retrospective, sat down one day, and ordered copies of all of my medical records. I read them and researched all they contained. Through that research I became more and more aware of others who had been so open and vocal about their experiences with cancer, such as Lance Armstrong. That continued to inspire and motivate me, and I became involved in advocacy for cancer survivors.

Initially I convinced myself I was getting more involved in the cancer community for others, but the reality is that I needed to do it for myself, and it was through sharing and opening up my own emotions about what I had gone through as I interacted with others that I finally began to really heal. 

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