Updated May 2, 2002

Reed's TC story

The last 9 months have been anything but dull. In March of 1996 I was diagnosed with testicular cancer. At 36 years old, healthy, active, living and playing in the Colorado Rocky Mountains, cancer was not what I had expected to hear. In late February I noticed that one of my testicles had grown significantly and was painful.

I went to my local doctor, and he diagnosed that I had epididymitis and prescribed antibiotics. After 10 days and no noticeable change, I went back to the doctor. I told him that something wasn't right and that the antibiotics weren't doing anything. I asked if I should be worried about testicular cancer given my family history with other types of cancer. After examining my testicles he pronounced that they "felt normal" and that it was really just an infection. I breathed a little easier, believing that my doctor surely knew what testicles were supposed to feel like a whole lot more than me, after all he examines testicles every week, right?. Well after another week on a different antibiotic, and no change, I went back again.

This time I demanded that there had to be a more scientific test that merely "feeling" my testes. He relented that I could have an ultrasound, but again, it probably was an infection and I'd just be reinforcing his original diagnosis. To relieve my anxiety, he scheduled the ultrasound for two days later. Once at the hospital my fears began to escalate. Lying naked from the waist down, with some kind of gooey jelly on my nuts, the technician moved a cold wand over each testicle individually. Suddenly her cheerful banter changed and she became quiet. Previously she had explained each step she was taking... now her explanations ceased. The exam concluded rather abruptly and she told me to contact my doctor for the results later that day. I knew that something was wrong.

About 3pm that afternoon, my doctor called me at work. "The doctor that reviewed your films feels that there might be a tumor". The words hit me like a shot. I was stunned, scared, and tears welled up. My family doctor continued to be reassuring, informing me that testicular cancer was very rare and that it still might be a mistake, a benign growth or maybe nothing. He indicated that he'd spoken to a urologist who recommend that I have several blood tests completed immediately. I drove down to the doctors office in a daze that afternoon and had a blood sample taken. It would be shipped off that afternoon and I should have results in 1-2 days.

After several very rough days, I received some good news, the Beta HCG test (tumor marker) was negative. Unfortunately, it would be another day until I received the Alpha Feto Protein (tumor marker) test results. When the results came they weren't good. Normal was supposed to be less than 15.9, mine was 23. I went to see my urologist, Dr. B. the next day. Armed with the test results and another ultrasound, Dr. B. told me that I most likely did have a tumor and should have surgery to remove the testicle as soon as possible. Again, another wave of "oh my God I'm going to die" hit me. It was Friday, the surgery was scheduled for the following Wednesday. I went home with my wife and we cried.

The surgery went fine (not that I remember any of it). I was in the operating room at 8am, and walked out of the hospital at 2 pm. If I had it to do over again, and I hope I never do, I would have stayed in the hospital longer. That first night home was pretty rough, getting around was painful. You don't realize how important your abdominal muscles are until you have them dissected. Dr.B. reported that the surgery had gone well and that they had removed what appeared to be an encapsulated cancerous tumor. On the bright side, he reported that the spermatic cord appeared to be normal, indicating that the cancer had hopefully not spread.

A day later, I received the news, the pathology of the removed tumor was determined to be a cancerous seminoma. Dr. B. set up an appointment for me to come in the following week for CT scans, X-rays, and tumor marker blood tests.

The next 5 days seemed like 25. I was extremely anxious about the pending tests. When the day of my appointment finally came I was almost relieved, at least I'd know something. As it turned out, my CT scans and X-rays came back negative. I was relieved beyond belief, now for the tumor markers. Unfortunately, these results were somewhat unusual... while my Beta HCG markers were normal, my AFP markers were still slightly elevated (21 nanograms/ml on a reference of 15.9 or less). Alpha Feto Protein is not supposed to detect Seminoma tumors and therein lies the peculiarity of my case. Another pathology was performed on the removed tumor to determine if it had a mixed component, again it came back as a pure seminoma.

In the next weeks I saw an oncologist, Dr. G. at University Hospital in Denver. University is a teaching hospital and he presented my case to his "fellows". They looked for, and discussed other possible causes of the elevated AFP. Given that all of my other tests (CT scans & chest x-rays) came back negative, they suggested that I follow a surveillance protocol and watch the AFP markers for a change. One theory put forth was that my "normal" AFP level is simply a few points higher than the average mean. My oncologist told me that he didn't want to give me drugs (chemo) that I might not need and if my wife and I were thinking about trying to start a family, chemo at this point would most likely render me sterile, at least for awhile. My urologist decided against post surgery radiation for the same reasons. So we wait, watch closely, and hope for the best.

So here I am, 9 months into surveillance and trying to keep a positive attitude. So far all has gone well, and I can only hope and believe that I will remain TC free. Surveillance does have its downside, it's an emotional rollercoaster. Some days you feel like you're going to be fine... others you fear the worst, that you should be doing something... anything to rid your body of any remnants of the disease. Some days you know that you're doing the right thing and others you begin to second guess your decision and wonder if you're playing a game of "Russian Roulette". I know that even if the TC does reappear I'll survive, the road may be rougher but I'll beat it.

I do know that I'm very lucky to have caught this early. I can't say how glad I am that I did not accept my doctor's original diagnosis and pushed for a more conclusive test. I have truly learned the value of a second opinion and "listening" to your own body. If you don't feel well, get it checked out and don't accept any ambiguous answers.

Update:

My story continues... In May of 1998 one of my CT scans showed a slight increase in the size of one of my lymph nodes to 1.5cm. My doctor recommend that we monitor this through the next several CT scans. At my September appointment the node had not changed, and my doctor started to think that this node was not cancerous. Unfortunately, at my February appointment, the node had increased to 2cm, which raised enough concern that my Urologist sent me back to my oncologist. My oncologist scheduled a needle biopsy of the node. This biopsy tested positive for Seminoma. Thus ended my surveillance. After nearly two and half years of surveillance with no changes, I had begun to think that I was in the clear. Now my cancer was "back" and I was filled with regret for not going through with radiation treatments at the time of my initial orchiectomy. After meeting with the oncologist he suggested 3 rounds of BEP chemotherapy.

To complicate matters, my wife and I were trying to get pregnant. Now with chemo looming on my horizon, the prospects of getting pregnant seemed slim. I asked my onco for a one month "stay" on the chemo while we tried to get pregnant the "natural" way. Of course in the meantime I was visiting the sperm bank, making deposits just in case we needed them. My first round of 5 days of chemo was scheduled to begin in early April. The second week of March my wife reported that the little stick turned blue... We were pregnant! I truly believe that God was working with us.

Walking in to the hospital for my first day of chemo I was scared to death, scared of death. My mother had gone through chemo 17 years ago and it had left a lasting impression on me. My wife and I walked through the parking lot arm in arm, tears welling up as we prepared to face chemo. The first day really wasn't bad physically. I had expected to be nauseous from the very beginning, but in fact I still had quite an appetite. My notes from that first day say "this isn't so bad, I can do this". The second day was a bit better emotionally, but physically worse. The effects of the chemo started to hit me. The second night was bad. I was throwing up for hours, when there was nothing left to throw up. The next day the nurses adjusted my nausea meds and that helped stop the vomiting. But from that point on food held no appeal to me.

A week after my first chemo treatment I awoke with a fever of 104. The trip to the emergency room revealed that my white blood cell count was 29. This is a number that is usually in the 10's of thousands. I was immediately admitted to the hospital and spend the next 5 days in quarantine while my body tried to rebuild its immune system.

Eighteen days after my first chemo treatment my hair began to fall out. I was prepared for this and had already decided to have my wife shave my head as soon as it started to happen. While it was funny to see myself without hair it was also frightening. Now not only did I feel sick, I looked sick. Amusingly, many of my acquaintances in my small community, who didn't know about my chemo, thought that I was merely making a fashion statement with my new "doo".

Unfortunately, my second round of chemo was delayed by a week due to my extremely low white cell count. After the second round of chemo I gave myself Neupogen shots to keep my white cell count high. While this wasn't much fun, it was certainly preferable to ending up in isolation again.

After the second round of chemo my onco scheduled another CT scan. Waiting for test results is the worst feeling in the world. There is nothing worse than knowing that somebody knows your news, be it good or bad, and they simply don't have the time to tell you. Finally the call came, my CT was normal, the cancer was gone!

The third round of chemo was fairly uneventful. Taking the Neupogen shots helped to keep my white cells up and allowed me to continue with my treatment. The last day of Chemo was indeed a very happy day, knowing that I would not have to come back for more!

Within a month of my last treatment my appetite started to come back and I actually felt hungry for food. My hair also started to grow back and my energy level rose. I was finally feeling like my old self again!

Now I could concentrate on the upcoming birth of my child and on giving my wife the loving attention and strength that she'd had given me. In December of 1998 we had a beautiful baby boy!

For the first two years following chemo I went for CT scans and blood work twice a year. After year 2, my doc lengthened the intervals to one year visits. Honestly, this was a bit nerve racking at first. After having check-ups every 3-6 months for the past 4 years it seemed too long in between visits to make sure that I was "OK". But as the years progress my apprehension lessens and my confidence in the fact that I am indeed "cured" by the grace of God and modern medicine strengthens. I passed my 4 year check-up with a cancer free "all clear" in April of 2002.

Throughout my experience with testicular cancer I have found the TCRC to be an incredible resource. The information that I learned from the web site and from communications with those on the site that had gone through similar experiences, proved to be invaluable. Having knowledge of your disease and treatment options empowers you to take charge and make your own decisions. I also found that my doctors were more willing to share more information with me when they knew that I had researched my situation. Thank you TCRC for all the help!

If you're facing TC right now I'd recommend the following: Educate yourself, find a doctor who is on the TCRC experts list, ask a lot of questions, determine a course of action, know that you're not alone, know that TC is highly "curable", and know that a year from now you'll probably be looking back at this experience as merely a "bump" in the road of life!


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