June 8, 2001

Nick's TC Story

In late December I made an appointment to see Doctor Rouff, my primary care physician. The appointment was a follow-up for acne treatment. But I had also noticed something else. I asked him if my testicle looked swollen. He told me that it did look abnormal, but that he didn’t think that it was cancer. However, he scheduled an ultrasound just to be sure.

The next week was Christmas, and the potential for cancer was the last thing on my mind. If the doctor thought it wasn’t cancer, then it definitely was not cancer. Still, I went to the radiologist the following Wednesday. After the ultrasound, the technician said to stay put and walked out the door.

I really couldn’t determine from her facial expressions if she thought it was serious or not: a perfect poker face. A few minutes later, the Radiologist walked in. Doctor Taber introduced himself, and then I asked him if there was anything important to report. Well, he said, he thought there was a mass on the left side. He then went ahead and used the ultrasound equipment and showed me the dark splotches on the screen that indicated abnormal tissue. I asked him what the differential diagnosis was at this point. (Thinking to myself, varicocele, hydrocele?) He said he couldn’t give me a histologically accurate diagnosis at this point, but probably non-seminoma or seminoma testicular cancer?

At this point, I just stared blankly. "I know this is not the news you want to hear," he said. He then said that at least one good thing he could tell me was that these cancers are often sensitive to chemotherapy. At that instant I lost my immortality. For the first time in my life I considered the possibility, the very serious possibility, of dying young.

Without blinking an eye, I said, what do I do now, what is the next step? He said he would call up Doctor Rouff and arrange for me to see a urologist as soon as possible. He walked out of the room. I got dressed and waited. He returned and said that I could go and see Doctor Rouff right away.

I walked out of the building and onto the street. The radiologist’s office was in the building right next to Doctor Rouff’s office. I stepped outside and the air felt heavy. I looked around at people passing by. Everyone seemed quite normal to me. I didn’t feel normal at all.

I went into the office and waited. Doctor Rouff then came into the room. Well, I have cancer, I said. He then told me testicular cancer is 99.99% curable. That was an exaggeration I knew full well, but still it was somewhat reassuring. He asked if I wanted to get started with a urologist here at Valley Presbyterian or at UCLA.

I replied, well, since I am going to learn to be a doctor at UCLA, I might as well learn to be a patient there too. This all is sort of like an extremely interactive medical school project, I thought. He promptly called up the Urological Center at UCLA, and connected me to someone who set up an appointment for the next afternoon. I could tell Doctor Rouff was upset. When I walked out of the room, he touched my shoulder and said he was glad we found this when we did. So was I.

The urologist made some small talk about medical school, then asked what the problem was. I told him about the swelling, handed him the radiologist’s report (which said very plainly that there was a mass on the left testicle consistent with a testicular tumor). He took a look for himself, then I said, so?they call the operation an orchiectomy right? Right he said. We can do the operation within the week, tomorrow possibly. Unfortunately, the secretary could not contact the surgery center and schedule it for tomorrow, so it was postponed until the following Thursday, one week away.

Monday was New Year’s day, so most of the hospital staff would be out the beginning of the next week. The doctor assured me that it was okay to wait a week. I was not so sure, though his positive attitude and confidence about the whole thing was reassuring. My parents, who also came to the doctor with me that day, took the news relatively well, I think. They were unhappy, but strong throughout the whole situation, at least in front of me. This was also reassuring. The next week was the longest of my life. I was supposed to fly to New York with some friends for New Year’s, but that certainly wasn’t happening any more.

Immediately after meeting with the urologist, I went home and researched as much about testicular cancer as I could. I knew that it was highly curable, especially if it was caught early enough, but I was not convinced we had caught it early enough.

I read about the secondary symptoms associated with metastatic testicular cancer. Coughing up blood. Good, I have never done that. Painful lumps on the back. Again, I have no lumps there, and no pain either. For a minute, I imagined feeling tingling sensations rush up and down my spine. This was just my imagination. Shortness of breath. Shortness of breath. . .do I have that? I immediately became acutely aware of my breathing. I yawned. I felt the need to take in larger breaths. I thought back, thinking if I had been breathing more heavily than usual these last few weeks. Maybe I had been.

For the next three days, I monitored every breath I took. Breathing was no longer an involuntary process for me, I became aware of any change in my breathing. I even compared my breathing rate to that of people around me, trying to determine if I had to catch my breath more often that everyone else. Was I yawning more too? I was convinced something was wrong.

For three days since seeing the urologist, I slept more than half the day away. I really didn’t feel like getting out of bed. I didn’t really want to see or talk to anyone. When I had to leave the house, I felt like a ghost. Was I going to die from this? All my priorities prior to learning that I had cancer seemed minuscule. Only a few things were important. Simply being alive suddenly took on an entirely new dimension.

I had no set plans for New Year’s Eve since I missed my plane to New York. Although a few friends were throwing a New Year’s Eve party, I had almost no desire to go. At this point, I wasn’t ready to tell anyone about my diagnosis. My family convinced me to go anyway, and eventually, after taking a very long nap most of the day, I got ready to go.

It was a typical party—people dancing, drinking, talking. I wasn’t in the mood though, so I spent a bit of time on the balcony looking at the night lights. One very attractive girl I noticed was not feeling well, and was resting in the bedroom. I decided to say hello to her, and ended up talking with her for a few hours. By then I had forgotten, more or less, about the cancer. The party lasted all night, and I returned home at 9:00 in the morning. I slept until that evening.

Then it hit me. I forgot all about my breathing experiment, and it really didn’t seem like I was short of breath after all. So, at least I had some reason to believe the cancer hadn’t metastasized yet, and I might just live after all. Still, my New Year’s resolution was to live. This was risky. I had never followed through with any of my New Year’s resolutions before.

A few days later I had my orchiectomy surgery. I wasn’t scared of the surgery. What scared me was the pathology report, the CT scans, and the X-rays that were to come. I had thought of a funny joke to tell the surgeon right before he operated. I was going to say "Well, let’s get the ball rolling." But I forgot.

I was wheeled into the operating room at 8:30, and by 9:15 the surgeon was talking to my family. I woke up at around 11:00 and left the hospital before noon. My parents remembered hearing the surgeon tell them that he thought it probably was a seminoma. That made me very happy, since this is the cancer that is sensitive to radiation therapy. You have to use chemotherapy to cure non-seminomas, and that was what I feared most. When I pressed my parents, though, they replied that maybe he said it was a non-seminoma. In any case, he said the word seminoma somewhere, they just weren’t sure if there was a non- preceding it. That was no help. I promptly fell asleep.

I slept most of that day, eating soup and crackers and drinking juice intermittently. The pain was not that terrible, except when I had to get up and walk around, which I did not do much the first day. Still, they gave me a pain killer for the pain. I took one pill and the pain was lessened, but I felt dizzy and almost threw up. I think I still have the rest of those pills around somewhere; the bottle is still full of them.

Sitting at home, recovering from surgery, I felt a strange sense of security—at least security for someone who knows they have cancer. At least the treatments had started. Whatever terrible things cancer had been doing to my body, at least we had started to fight back. Who knows, maybe I would luck out and have seminoma. Then, instead of being poisoned and having my hair fall out, I would only have to have high energy radiation aimed at my abdomen for a few weeks. I was a little concerned about missing school. If I had to have chemotherapy, then I would probably have to take time off. That would set me back a semester at least. Then I thought, well, worst case scenario is that I die. I tried not to think about that.

I remember reading an article about this surgical oncologist who was diagnosed with cancer. He said that when you find out you have cancer, you can do one of two things. You can tell everyone, or you can tell just a few people. Of course, if you tell just a few people, everyone will find out soon enough. So why not tell everyone. So that is what I did.

I sent a mass email to just about everyone I felt close to: friends, family, everyone. There were probably at least sixty people on that email. I just told them what was happening, and that I was expected to be okay. Over the next few days just about everyone I knew was calling me. I brought the phone next to the couch so I wouldn’t have to get up to answer it. People were visiting me non-stop that weekend too. Some friends baked brownies for me to eat, which I did. I really do have great friends. I knew that already I think, but now I have definitive proof.

Classes started back up on Monday morning, and I felt good enough to go. Everyone was pretty surprised to see me up and around too soon, and I was very happy to be there. I had a lot of trouble concentrating in lecture, though I think this is a chronic problem and probably not related to the cancer. My main concern was the results of the pathology report.

I took a walk down to the urology department to ask my urologist if the report was finished. He wasn’t there, so I called up surgical pathology and asked about the status of my testicle. The operator said that it had already been analyzed, but she couldn’t give me access to the record. I asked her the name of the resident who was assigned to my case, and she told me. So I paged him. Luckily, he answered the page immediately, and I asked what it looked like.

Classic seminoma, he said. I asked if there was any apparent invasions, and he said there wasn’t. Boom. I felt like I just hit the Lotto jackpot. Actually, I have never won the lottery, but now I know what it must feel like. The resident said I could come down to the lab and take a look myself. This was probably one of the first times a testicular cancer patient got to look at the pathology slides of his own testicle. I had seen a lot of these slides in histology, but I never paid much attention to any of them. This one? Well, a lot was riding on it. The margins were not invaded, and neither was the spermatic cord. It looked like a textbook case of pure seminoma. Maybe they will use my slides to teach third years during their pathology rotations. I hope not.

The next day I had a CT scan and a chest X-ray. I arrived an hour early before the CT scan so that I could drink a pitcher of what looked like Kool-Aid, but tasted like metal. It was contrast agent to visualize the scan. I sat down to drink. Drinking next to me was another guy, probably in his thirties. We started talking about the Kool-Aid, then I asked him why he was here. Cancer, he said, testicular. Me too, I said. He finished chemotherapy over the summer, and this was a follow-up CT scan. I was just getting started.

He told me about chemo. My fear of chemo was further justified by his description. He was doing well now, and his life was pretty much back to normal. I would never have thought, by looking at him, that anything had been wrong with him. Three attractive women then sat down nearby. One of them had short blonde hair and was also drinking the house specialty. She looked very good, could have been an actress even. (As it turned out, her mother was actually a well known celebrity in her time.)

I never would have guessed she was a cancer patient. I guessed her to be mid to late thirties. We all got to talking about cancer. The woman had a neuroendocrine carcinoma: a rare cancer that is difficult to treat. It was inoperable, and they had tried chemotherapy, but it did not work. The tumor was still growing. I asked what she and her doctors were doing now. Making history she said. She was on a clinical trial. She had a very positive attitude.

I immediately felt extremely lucky to have testicular cancer, which at least had a well known set of treatment options. She asked what I did. I told her that I was a medical student who wanted to become an oncologist. Everyone there thought that was a good thing to do. Of course, everyone there also had cancer. The CT scan technician then called me in. Getting a CT scan is interesting. They inject this contrast agent into your arm. As it mingles with your blood you feel a strangely warm sensation throughout your body. You also develop an odd taste in your mouth—something like a combination between a midori sour and a copper wire. Very strange.

I did not want to wait for the CT scan results, so I asked the technician for a copy of them. Unfortunately I could not find a radiologist to look at them for me, and the technician did not want to tell me anything. So, I tried to read them myself. This was pointless, but at least I took some relief by the fact that all the obvious organs and bones seemed to be in the right places.

The next day I got the official results of the CT scan and X-rays. They said there was no sign of metastatic disease. Again I had won the lottery. I went back to a follow-up appointment with Dr. Reiter, who suggested I see a radiation oncologist. We talked a little about a surveillance option, but decided it was better to err on the side of safety and go with the radiation. I saw the radiation oncologist a few days later.

Dr. Parker, my radiation oncologist, told me that I would need seventeen doses of radiation treatment. He also suggested I get a lymphangiogram. This procedure introduces a contrast agent into your lymphatic system that allows very clear visualization of lymph nodes. He explained that this procedure was not often done these days, partially because few physicians knew how to do this procedure. But Dr. Collins, another radiologist, was an expert on the procedure. Dr. Parker said that he had treated close to a hundred patients with my disease, and all of them came through just fine. This was very reassuring. I decided to go through with the lymphangiogram. All things being equal, I figured the more procedures I had done to myself, the more I would know what my future patients would be going through.

Dr. Collins anesthetized my feet, made small incisions to find the lymph ducts, and then injected the contrast agent. As it percolated through my lymphatic system over the next couple of hours, he engaged me in a rigorous discussion on cardiovascular physiology, which was the class I was missing to undergo this procedure. The next day, after the contrast had sufficiently spread, more X-rays were taken. I was sitting in the back of a large lecture on muscle cell physiology when I saw Dr. Collins walk in the door. The lecturer stopped and turned to Dr. Collins. He then said that one of his patients was here in the lecture. I raised my hand. I was sitting way in the back, as usual. He smiled and said to me, it looks all clear my friend. The other students applauded, they knew what he was talking about. Normally I am all in favor of patient confidentiality, but this breach of confidentiality was appropriate and welcomed.

I started my radiation treatments soon after this. They began with a simulation, where the exact area to be radiated was delineated with markings and then X-rayed. The first treatment seemed to go smoothly. I just laid there, and this machine situated above me made a low humming noise for about a minute. It was then moved below me, and again it irradiated me for about a minute.

It is somewhat counterintuitive that you can’t feel or see the treatment itself. It is almost like it isn’t happening. Nevertheless, I heard that many people get sick after radiation, so I took some anti-nausea medication and went home. Upon arriving home, I felt thoroughly exhausted. I didn’t even feel like eating, and the smell food made me cringe. I collapsed onto the bed and fell asleep. If every day of treatment was going to be like this, then I was in trouble.

The next day was much of the same. I think I was even running a fever. Then it was the weekend. Surprisingly, I began to feet better. Even more surprisingly, I began to feel better throughout the next week despite the radiation therapy. I wasn’t even taking the anti-nausea medication. Looking back, I may have just been sick with a random cold or flu right at the start of radiation, which then went away. I joked with the resident that since I was feeling perfectly normal, then maybe they weren’t really irradiating me.

Was I getting the placebo in some deranged clinical trial? No, I was just lucky not to have side effects of radiation therapy. During the radiation treatments, I started imagining how the radiation was destroying the alleged metastasized cancer cells. I imagined myself inside a giant blood vessel carrying a machine gun shooting at amorphous blobs of cancer cells. I know, this isn’t really how radiation works, but it was something to think about while you are laying there during all those treatments.

In retrospect, I always tell people I got lucky. How can cancer be lucky they always ask? Well, I had testicular cancer, a seminoma, that had not spread. Aside from the initial diagnosis of cancer, the rest of the news was all good. Still, in those initial days before the pathology report, CT scan, X-rays, and lymphangiogram, when the prognosis was still up in the air, I was terrified. I lost my immortality from this, and it’s never going to be the same. Whenever I am feeling depressed, now I can say, "well, at least nothing hurts and I am still alive." One thing that continues to haunt me is that if I had been born fifty years ago, before the treatments for testicular cancer had been worked out, I might have died a young man.

I decided a few years ago that I wanted to be an oncologist. I wanted to discover new and more effective treatments for cancer. So I applied to medical school. I enrolled in the UCLA School of Medicine MD/PhD program in the fall of 2000. Apparently, cancer got wind of the fact that I was out gunning for it, so it decided to launch a preemptive strike against me before I even got my boxing gloves on. In late December of 2000, I was diagnosed with cancer. As of now, April 2001, I think I can say that I am most likely cured. But my fight with cancer has just begun. I will continue to fight cancer at the laboratory bench, at the bedside, even in my own body, if it again comes to that.

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