Last Updated February 9, 2006
My experience with TC began in August 2002 while I was living in Moscow. I was 29 years old and had been there for a year working at the American Embassy on a fellowship program as a sort of "diplomat in training." In fact, for most of my adult life (since starting graduate school in 1995 at the age of 22) I had been focused on making it to Russia, and being able to work as a diplomat only made it more of a dream come true. After years of academic preparation and grinding through the Russian language in classrooms, I was thrilled to be there. I was supposed to be there for at least another year and had the option of staying longer.
That all changed when I walked into the embassy clinic on a Monday afternoon. I had noticed that my left testicle was larger than the other, and felt hard. There was no pain, but after about a month it hadn't gone away, and I was concerned. I've always been health conscious, religiously getting annual physicals, and on my last one before going to Russia I had asked my doctor what things I should watch out for. He said a man my age (I was 28 at the time) was mostly likely to die from a car accident or to get testicular cancer or HIV from unprotected sex. TC seemed pretty far-fetched at the time. Now I'm very glad he mentioned it, since it raised my awareness and prompted me to seek medical help early.
The embassy doctor (an American) examined the testicle by shining a light through it and concluded it was solid, not fluid. He was obviously concerned and immediately sent me to the Kremlin Clinic (where the elite of Moscow society get treatment in a country with generally abysmal medical care for the average person). Before I left, he told me to be ready to get on the "big bird" to London as soon as the next day. At the clinic, they had an ultrasound machine and I was examined by two nice Russian doctors who stayed late to see me that same afternoon. They rubbed a warm liquid on my scrotum and of course a pretty nurse was present to make me feel silly. As I lay there I thought about how odd it was that so many people had seen my equipment that day. They also took a chest x-ray on the embassy doctor's orders. He told me it was to check for tuberculosis, which he thought might be the cause of the swelling in the testicle. I wonder if he was really concerned about cancer spread, though. The whole time I talked to him he never mentioned the word cancer, though of course, that's what I was thinking.
The ultrasound showed a solid mass, and the embassy doctor advised me to leave immediately for London. Since I was on the fellowship program, I didn't have State Department health insurance benefits, even though I was a paid employee. Luckily I had been vigilant about getting medical evacuation insurance, and I had good coverage through HMO Illinois under COBRA from my previous job as a journalist. It made things a little more complicated because I had to call the local doctor from the medevac company and explain the situation to see if they'd paid to fly me home to Chicago. He turned out to be a New Zealander and had a reassuring manner that I appreciated very much at the time. I reviewed my policy, and it looked to me like they didn't have to pay for my medevac unless I needed intensive care on the plane, so I thought I'd be out about $1,000 bucks to get a next-day ticket myself. But I was pleasantly surprised when I heard from the Kiwi doctor late that night, and he said they would pay for the ticket.
I decided to wait a day to get things under control at work before I left, and got a ticket on Lufthansa at 7 am on Wednesday morning. After a frantic day at work explaining the situation to my boss and trying to reassign my duties to already over-worked colleagues, I called my doctor in Chicago and left a message. He was actually good enough to call me back in Moscow Tuesday night to discuss the situation and set up an appointment for Wednesday afternoon as soon as I came in.
I was off to the airport Wednesday morning at 4 am, about 36 hours after I had first walked into the doctor's office. The drive out of Moscow to the airport was surreal. First, I had a beautiful female blond Ukrainian driver in a brand new BMW arranged by the medevac company. Usually taxi drivers in Moscow are chain-smoking emaciated men in boxy, unsafe Russian-made sedans. Second, Moscow is amazingly beautiful at night and the streets were emptier than I'd ever seen them. I'll never forget the sight as we drove across the bridge over the Moscow River with the Kremlin illuminated by spotlights on the far bank and the city of 10 million people eerily quiet around us.
The flight home was fine, if long. It took about 14 hours of traveling, but with the 8-hour time difference I actually arrived at noon Wednesday Chicago time. My parents picked me up at O'Hare and we went straight to the doctor. He took a look and left to call a specialist to see me. When he came back I asked him hopefully what else it could possibly be besides cancer. He said he wasn't an expert and the main thing was to determine if it was cancer. I was pretty sure at that point that it was, but I was hoping he would give me something else to pin my hopes on. It's a natural reaction to want to think it could be something, anything, but cancer.
I went for another ultrasound that afternoon since they didn't fully trust the one from Moscow. The technician was a pleasant, attractive young woman and I flirted with her as best I could under the circumstances, figuring that I wasn't going to start getting depressed and gloomy about the situation. I'm lucky to have a generally happy disposition and a good sense of humor, and I use black humor when something bad happens to me to make my family and friends feel less tense when I give them the news. I'm just not one of these people who can get completely serious about bad things happening to me, even death. Life is a gift and you can't walk around being afraid of it or of death. You have to be able to laugh at yourself and the absurdity of the universe sometimes or else you might go crazy thinking about all the bad things in the world. You could die at any moment in a terrible accident or at the hands of an evil person, and you can't let that stop you from getting out of bed in the morning. Humor is one thing that I find helps me get through the tough moments, and you have to admit there's something inherently funny about having one of your balls swell up and get cut out by a skilled surgeon. Think of all the jokes that revolve around having "big balls" and you'll know what I mean.
I suppose it's a lot easier to laugh at yourself when you know you have a very good chance of survival, which I did even before I got the full story on my cancer. I had heard enough about the high cure rate and remembered baseball player John Kruk and cyclist Lance Armstrong getting through it, so I wasn't as worried as I might have been. I wonder if I would have been able to joke about it if I had something more deadly. I just heard yesterday that Warren Zevon has incurable lung cancer. He released a statement joking about how he hopes he lives until the next James Bond movie comes out. I don't know if I could still laugh at myself under a death sentence like that. I hope I never have to find out.
Getting back to the ultrasound, I chatted with the technician and she was responsive at first, but I could feel her getting grimmer as the exam continued. I figured that wasn't a good sign. When she was done all she could manage was a pained "good luck," as she avoided my eyes. She didn't tell me anything specific and I knew better than to ask.
After the ultrasound, I went to a specialist who stayed late that afternoon to see me, just like the doctors back in Moscow. I was impressed throughout the whole ordeal by the willingness of doctors to go out of their way to help me, and I salute them all. I was able to see an experienced cancer specialist, since I was in a town (Evanston, IL) with two major hospitals and a lot of good doctors. My doctor was the surgical director of urologic oncology for a urology practice and had been trained in TC at Sloan Kettering. He took one look at the CT scan results on his computer and told me I had cancer. He showed me the screen and pointed out how the tumor had grown and squeezed the healthy tissue into a small section on the edge of the testicle. It was a bit of a shock to actually see the tumor and to finally hear someone tell in no uncertain terms that I had cancer. I was now about 56 hours since I had first walked into the embassy clinic without a care in the world. He scheduled me for surgery the next morning. I hadn't even been home yet since flying into town.
The main thing I was concerned about was sexual function. I was relieved to hear of the small chance of the other testicle becoming cancerous, but even more relieved to learn I would still be able to have sex with them both gone, as long as I got testosterone. Up to that point, I had had nightmarish ideas that if I lost them both I'd be a eunuch or completely unable to have sex again. The doctor explained that the testicles only make the sperm, but that I would still produce semen and could have sex without them. I never knew that!
The surgery the next morning (Thursday) to remove the testicle went fine, though I had a little pain after and had to request something more than the pills. They finally gave me morphine and I was fine, though I felt out of it and tired. Part of it was probably still being jet-lagged. I had opted for a spinal block plus waking sedation rather than full anesthesia, but I felt the effects of the sedation and wasn't well enough to go home until the evening.
I was recovered enough on Saturday to get a CT scan of my abdomen, and by Sunday I actually managed to walk down to the video store to rent a movie. Monday morning the doctor called to say the CT scan was clear. The tumor was mixed, he said, without giving details. It was the first good news I'd had. My blood test showed elevated hormone levels and the doc told me to get another test one week after surgery, and then see him a week after that when the results were in. I spent the next few days sleeping a lot and trying not to think too much about dying, though by this time I had found the invaluable TC website and had learned enough to know I wasn't in great danger. The most I feared was a lot of discomfort, either from RPLND or chemo. Based on a mixed tumor I assumed I had a non-seratoma, meaning radiation wouldn't come into play. The more I read about RPLND, the more I didn't want it. I didn't want the scar, the pain of recovering from major surgery, or even the smallest chance of retrograde ejaculation.
I guess some would consider it an acceptable risk, but retrograde ejaculation would make me feel like a freak when it came to sex. As I waited I kept thinking about the operation and hoping I would be a candidate for surveillance. I knew I might not be able to go back to Moscow while under surveillance, but the more I thought about it, the more I didn't want the surgery.
Finally I saw the doctor again two weeks after having the testicle removed. The pathology report showed mostly immature teratoma and seminoma with almost no embryonal carcinoma (less than 1%)! I was thrilled since I knew the amount of embryonal carcinoma was key factor in assessing whether to do an RPLND. There was also no evidence of vascular invasion. My blood readings were coming down normally. I was clinical stage 1 and a good candidate for surveillance. The doctor suggested either surgery or surveillance, but said going back to Moscow would not work under surveillance. By this time I had come to peace with the idea of not going back to Moscow, as much as I loved the place and had worked so hard to get there. I was more thankful than ever for the website, since I felt I had all the information to make a good decision on what next step to take. The doctor explained things well and answered all of my questions, but I wouldn't have known what to ask without the website. I felt very confident going with surveillance.
The one thing I did go around a bit with him on was the pathology report. I wanted to know exactly who had done it. Were they highly familiar with testicular cancer tumors? Was it someone as Sloan Kettering where he was trained? He seemed strangely evasive on this, saying only that it was an experienced person and that the results were absolutely clear in my case, especially concerning the small amount of embryonal carcinoma. I couldn't let it drop, even though I feel tremendous pressure in such situations to concede to the experts. I knew how important the report was from the website. I told him I would feel more comfortable if someone down at the center at IU looked at it. He said fine, but that it wasn't necessary. He also said the newest evidence showed that the pathology report was not extremely important in treatment options. I challenged him on that one, saying that the info I got online didn't support that statement. He said he wasn't surprised, because these were the newest findings that had been presented at a seminar earlier this year and hadn't made it into general circulation yet. His basic point was that my decision for surgery or maintenance was not highly dependent on the pathology report anymore. [Editor's Note: It is 3 years later and I do not know what evidence the doctor was talking about. It is true that there are many circumstances where surveillance is an acceptable option, but it still pays to have an accurate pathology report.] I was so relieved not to need surgery that I decided to just live without getting a second opinion, especially since I had great faith in the chemo's ability to cure me if anything spreads.
I also asked him about a testosterone reading, since I felt fine at the time but wondered if a baseline now would be useful in case of future problems. He hadn't mentioned it before the surgery and I hadn't found the website yet, so I didn't know to ask. He said there was no need for a baseline, since it would be clear if there were problems in the future. I wasn't going to fight on that one but it was the one area where I wasn't really satisfied, since his opinion was openly at odds with the website info. Heck, I would feel better doing it, so why not? I did get info on how to get a sperm count and do sperm banking, though I learned I could still bank sperm even if the other testicle developed a problem, so I'm not sure what I'll do there. I may get a count just to see what the status is, but I haven't decided whether to bank sperm or not at this point. There doesn't seem to be a pressing need.
The surveillance schedule he proposed was well in line with the one on the website, which reassured me. The only difference was CT scans every three months in the first year, instead of every two. I had blood drawn again and am still waiting for the results. In another week I'll have my first monthly follow up. After that I'll go back to Moscow for a month to wrap up my life there, and then come back to the good ol' U.S. of A. I'll be here for the next two years at least, doing my surveillance and hoping nothing shows up. Now my only question is what to do with my life! I spent 5 years waiting to go to Russia, and got my dream year there, but now I'm at a bit of a loss. I'd like to go abroad again in diplomatic service after the two years are up, when I have the freedom to do more relaxed surveillance. I hope I can find a job in Washington to stay involved with international affairs in some way until then.
So that, in a long-winded way, is the story of my experience with TC so far.
Daniel C
September 15, 2002
Postscript: February 9, 2006
Since I was diagnosed and had surgery three and a half years ago, I've been completely healthy and cancer-free. I'm glad that I chose an intensive surveillance regime and didn't have an RPLND. My doctor left it up to me, and I was lucky enough to have seen the TCRC website beforehand and knew that it was okay not to have one. Now I'm working for the State Department again in Washington, D.C., and I hope that this year (2006) they will give me medical clearance to work overseas. On a personal note, if you're worried about sexual function after the disease, I can report that in my case, I'm back to my old self again. Hurrah for modern medicine!