November 24, 2001
First, here's an executive summary of my cancer experience: clinical stage I mixed germ cell tumor, 45% embryonal carcinoma, no vascular invasion. I had an orchiectomy, my CT scan and X-rays were clean, and my tumor markers went down, so I was clinical stage I. I talked to a specialist oncologist and concluded (based on not having vascular invasion and having only 45% embryonal) that I had a 20% chance of relapse--low risk enough that I decided to go with a surveillance protocol (rather than an immediate RPLND). I've been on surveillance for more than a year now, with no recurrence.
Okay, now for the longer story. I kept a diary through the whole process of diagnosis, so I have dates for everything, and I hope you don't mind if I use them here. Having the dates gives a better sense of how fast these things happen, I think.
The whole TC thing started Sept. 19, 2000. I'd been aching for the past week or so, just a dull ache somewhere in my pelvis that made it hard not to walk funny. I was immediately thinking I had a hernia or something. My Dad had had a hernia, so it was hard not to think that's what it was. My conventional response to medical issues kicked in, where I promise myself I'll talk to a doctor real soon, and walk around in a daze.
On the 19th, though, I actually lifted up my testicle and took a look at it, thinking, "It's not anything wrong with my testicle, is it?", and my God, it was huge. It was twice as big as the other one. Immediately I thought, "It's cancer, it's cancer." I didn't know of any other possibility, and they'd mentioned TC to us in high school, just briefly enough to spook me and make me worry about having to check my balls every month for the rest of my life. I remember sitting there in high school and thinking, "I'm going to get this testicular cancer, I know it." So naturally it was what leapt to mind upon noticing that my testicle suddenly looked like a hot-air balloon.
What made things more difficult was that I've been pretty healthy and hadn't bothered with doctor visits. So suddenly I had to find a doctor, make the phone calls, do the paperwork, and have a long talk, just to get to having my problem checked out. My girlfriend, thankfully, was extremely supportive and got me to call a doctor and get in for a visit by the 22nd.
I'm on the phone at work trying to make an appointment, and the receptionist asks the reason for the visit, and I'm hemming and hawing: "Uh, I'll tell you later. Is that okay?" I just didn't know if I could lower my voice enough in my work cubicle so that "My balls are really big," wouldn't sound conspicuous. And when she asked if it was urgent, I didn't know what I should say. In fact, I ended up concluding the call and then calling back and saying, "Yes, it's urgent on second thought, could we make it sooner?"
So I go to see my doctor (primary care, general practice) on the 22nd, she examines my testicles, she says wow! But I'm infinitely relieved when she says it looks like epidydimitis and prescribes two weeks of Cipro antibiotic. "Could it be cancer?" "I don't think so, cancer doesn't happen overnight like that. And it's a uniform swelling. Looks like a textbook case of epidydimitis."
Two weeks pass. I take the Cipro, the pain goes away, but my testicle is still nearly as large as it was before. I follow up with my doctor, and she prescribes another two weeks of Cipro, saying "You've got a dynamite case of epidydimitis there, it's just likely to take a little longer."
Another two weeks pass, and the swelling's not gone. She refers me to a urologist, whom I see Oct. 24th. He confirms that it looks like epidydimitis, and the swelling's just taking a long time to go away. But he does request an ultrasound, just in case. I got the ultrasound at my local hospital on the 25th.
The ultrasound was interesting, especially since they went to such lengths to preserve your privacy when they're about to be handling your balls: "Tuck your penis up under this towel and put your testicles on top of this towel, and I'll be back in a minute." The worst thing is the slimy stuff they cover the scrotum with so they can slide the sensor over it. It is uncomfortable to have a swollen testicle moved around, but on the whole it felt like a relatively normal medical thing.
The technician looks at the normal testicle and told me, "Looks good. Normal blood flow." She looks at the swollen testicle and she's a lot quieter. I crane my head to look at the monitor. "So that's, like, normal blood flow, too, right?" And she says, "The radiologist has to make the diagnosis, I'm just the technician," and makes chit-chat. I wonder what it must be like, doing that work. You must have a clear idea of who's walking out of there with cancer and who doesn't. I mean how can you miss a huge lump that isn't supposed to be there, and yet you're not supposed to say anything.
I spend the next two days thinking, well, that was probably alright. It's just a swelling. I get a call at work on the 27th, from my urologist's receptionist. "The ultrasound showed masses. Dr. M would like you to get blood work done. He can see you for a follow-up on the 30th." And that was it. The ultrasound showed masses. After hanging up and staring at my computer for a while, I call back and ask if I can talk to my urologist on the phone, or see him that afternoon, since I don't think that's enough information, and I'm in the dark here, worrying about the implications. And she says, "Look, I already told you all there is to know. Dr. M will talk to you on Monday." A lot more staring at my computer goes on. I call my girlfriend, she does a good job comforting, but still no information. I try to get in touch with my primary doctor, and eventually, thank God, she calls back and tells me about TC. "It's curable." That's what I needed to hear. Two words I keep repeating to myself all weekend.
My girlfriend actually phoned me at work, I think, and told me about this great site she found called the TCRC, and she was already printing off pages from it by the time I got home. I read through all the TCRC stuff and started keeping a diary so I knew what happened when. I got the blood work done on Friday at my local hospital. The blood is the easiest thing so far, just one pinch and they've got all the blood they need.
I went to see my urologist on Monday, the 30th. He showed me the ultrasounds, the masses, and, yup, there were masses alright. Basically, my whole left testicle was one big mass. He does another physical exam, applying more pressure to the testicle, and says it does feel tumor-like, rather than a uniform swelling. Apparently it makes a difference how much they squeeze the testicle, and they're reluctant to squeeze unless they have a good reason to (Yes, it doesn't feel good). At that point, we only had results from two blood tests in. Out of AFP, BHCG, and LDH, we had BHCG (normal) and LDH (high), so we still needed AFP. He also wanted another radiologist to look at the ultrasound. At this point, it looks like cancer, but we're checking everything we can check. He also asked me to get an X ray and CT scan to check for spread of the cancer outside the testicle.
So the next day they get me in for an X-ray and CT scan at another hospital. The only place they can get me in is a couple towns south, so I rush out in a cab and everything, but the important thing is to check as soon as possible. Doing the CT scan is my first introduction to drinking barium, and it's not all that bad, even though I'm downing the stuff at work and looking around to see if anyone notices I've got a weird 32 oz. vanilla shake with a screw-top lid. The CT scan isn't so bad - I was worried I'd be claustrophobic, like in an MRI, but it isn't anything like that, just a big donut that a table pulls you in and out of. The thing that's more uncomfortable is the contrast they hook you up to with an IV - it's like you're tasting something in your entire face, and your crotch heats up really unpleasantly. Also, that first IV left a bruise that hung around for months, but it did eventually go away.
I saw my urologist again the very next day, Nov. 1st, and he's got my third blood test result, and he's talked to another radiologist about my ultrasound. My AFP marker is high, and the other radiologist agrees that the masses look like cancer. The consensus is that high markers (AFP and LDH) + ultrasound with masses + exam that feels tumor-like = Testicular Cancer.
Up until this point, the question has been whether I probably have cancer. Now the answer is yes, you probably have cancer, and the unavoidable result is yes, you need an orchiectomy. I decide it looks clear-cut enough that there's no point in getting a second opinion, and we go right ahead and schedule an orchiectomy for the 8th. My birthday's on the 6th, so it's a birthday present, basically. Luckily, my health plan at work covers all the tests and surgery, so it's not a very expensive present. I was also pleased to find out it was easy enough to do at our local hospital, and that my urologist had done many orchiectomies and would have no problem doing mine.
On Nov. 3rd, I got my X-ray and CT scan results which show no spreading of the cancer to my abdomen or lungs, so assuming I have cancer at that point, it looks like stage I. By this point I have a TC folder, and I'm keeping copies of all the test results as well as printed-out pages from the TCRC and various articles.
At about this time, I'm also trying to make some other decisions. As far as fertility goes, my girlfriend and I had read all the stuff about chemo and its effects and possible effects of RPLND, and we're wondering if we should do anything about fertility beforehand. I looked into doing semen analysis, but it's mutually exclusive with intercourse, so we decided that instead of spending the next three days on a fertility test, we'd spend them on our own fertility test, actually taking a shot at conception. More on that later. I also decided to get my hormone levels taken before surgery, as recommended by people on the TCRC, so I'd have a baseline later in case there were any problems there.
At the same time, I'm trying to work out the timing of everything. I let my boss know I'd be out for surgery, though I don't discuss what it is. I tell my parents over the phone, and for a person that totally fears dropping emotional bombs, this was a big trial. I tried to sound chipper and normal about it, but I still don't know whether that made it worse. It was the shortest conversation of my life. I think they were just reeling when they got off the phone. Then they actually decide to come up and visit me so they can drive me to the hospital and help out with things, which actually turns out to be an immense help.
At an ungodly hour on Nov. 8th, my parents drive me over to the hospital and hang out with me in the waiting room for surgical day care. The U.S. presidential election was the night before, so we're sitting watching the news as it becomes clear that no one has a clue who our next president is going to be. I'll always be able to tell people exactly where I was and exactly what I was doing when I heard that the 2000 election was inconclusive.
I have to go change into a hospital gown and get my belongings together and get some blood taken. Everything happens pretty leisurely. It's my first surgery, but I'm not too nervous. I just wonder what the anesthesia will be like. My main concern is whether I'll be spending the night at the hospital or whether they'll send me right out once the surgery's done. I asked my urologist about it, but I wasn't quite sure whether I was going to be able to stay overnight.
My urologist and his colleague are going to do the surgery, and I meet the colleague and meet the anesthesiologist. My parents hang out in the room with me, which is comforting. Eventually I got wheeled down to the operating room. The doctor's talking to me, and it's kind of like eavesdropping on someone's workplace, hearing the chat, the jargon, watching people being busy. Then the anesthesia kicks in, no different from falling asleep, and I wake up being rolled down an endless corridor feeling really uncomfortable, thinking "Get me off this thing, get this stuff off me, what is all this stuff?" I hear my urologist telling me I'd be able to spend the night.
Once they get me into a hospital bed, I feel much better, except for the IV drip stuck in my arm, constantly feeding me and keeping me pumped with medicine. I eat lunch, I throw up, everyone agrees that's normal, and it's just the anesthesia. I spend the next twenty-four hours focusing on keeping a little ice pack on my incision and seeing how many times I could wheel my IV over to the bathroom without tripping myself with its electric cord. Movies with hospital scenes never seem to show the IV-connected patient getting up twelve times an hour to piss like a racehorse, so I was a little disillusioned. The getting in and out of bed was a real pain because the only time my incision hurt was when I tried to sit up, and here I was doing it constantly, but eventually I developed a rolling out of bed maneuver that would stick with me for the next couple days.
They let me go the next morning after my urologist dropped by and checked on me. It seemed anti-climactic, and I was never quite sure when I was supposed to leave, but the idea was that as soon as I felt well enough to get up out of bed, I could go home. The rest is pretty standard surgery stuff, though it was novel to me at the time. I stayed lying down most of the time, rotating cold ice packs over the incision. Between lying on our futon bed and lying on our futon couch, I chose the bed. Even though it was right on the ground, it was actually easier to just roll out of it and do something like a push-up to get up. I kept taking antibiotics, but I didn't need any painkillers at all.
Other little things took a day or two. I'm not sure whether it was the night I came home or the next that we had sex again, but actually it wasn't any more difficult than doing anything else, and it was a real relief to immediately find out that the sex didn't feel any different. Since the incision dressing had to be kept dry, I had to wait a couple days to do a normal shower again. I had an appointment with my urologist five days after the surgery (the 13th), when he removed the dressing, before I got to actually see the incision.
It didn't look like much, you could see the line, but there wasn't more than that. I had made sure to ask beforehand whether they were using sutures or staples, and they used sutures. Apparently the incision comes out pretty well that way. There were also tapes over the incision, which he said would fall off on their own as I showered, but as I remember, it took forever, and I eventually asked if I could just peel them off later. He said it would take anywhere up to six months for the scar to become smooth, and he was about right. Hairs kept growing in and getting in the way and making it bumpy, but eventually it did all smooth out, and now it's just a red line that's hidden by hair. The only real annoying thing about it was the point at which hair started coming in and I suddenly had stubble all over the left side of my crotch.
Probably the biggest concern I had about the surgery is what your balls are supposed to look and feel like after you get one removed. The nice thing about the scrotum is that it pretty much hides the details of the testicles inside, and it turned out that it pretty much looked the same, only smaller. After carrying around this huge inflated left testicle for months, it was actually a relief to find a manageable-sized scrotum hanging there. It felt no different at all. The only thing that took some getting used to is that the genitals end up in new positions: with a space where a testicle used to be, the penis ends up hanging in new and surprising ways.
I returned to work a week after my surgery, and though I was moving a bit slowly, I got around just fine. Of course, my job involves sitting at a desk in front of a computer, so there were no special challenges there. I was concerned about when I'd be able to carry around groceries and laundry, but my urologist waffled about that. "You're always at a higher risk for hernia. If it feels too heavy, don't carry it." I eventually got him to say, "A couple bags of groceries, yes. I wouldn't carry five or six bags at the same time." So a couple weeks after that I started doing normal things like shopping and laundry again.
For work, I also had to fill out some forms about my sick leave, so that I'd get leave with pay, and I found that my company's forms required the doctor to fill in a whole lot of detailed medical information. I got my doctor to fill it out, but naturally, the word "cancer" was all over it. I turned it in to my HR department, but complained that it was a huge invasion of privacy, and they actually agreed to change the forms.
So that's the orchiectomy story, next comes the treatment story, or rather the treatment planning story. I got the pathology report from the orchiectomy, done by the local hospital, at my follow-up appointment with my urologist five days after the surgery. It's interesting to finally see the pathology report. I was still hoping it might not be cancer (some sort of cyst instead) but at the same time it would seem like the orchiectomy would be a waste if it wasn't. Well, it was definitely cancer.
The report had mixed news: there was no vascular invasion, but it was a mixed tumor with nonseminoma, and worse than that, it was primarily embryonal carcinoma. But the report didn't mention how much embryonal, and we send the slides to Brigham & Women's Hospital in Boston for a second path opinion anyway. We also still don't have post-orchiectomy tumor markers yet, so I'm not sure I'm even stage I. I got a blood test at the end of that week (Nov. 16th) to check the marker levels. Meanwhile, my urologist recommends RPLND, saying that embryonal is an automatic high-risk indicator and suggests RPLND, and he sets me up with Dr. Richie, a specialist urologist at Brigham & Women's, for a second opinion about treatment.
My problem going in to see Dr. Richie is that I still don't have more information - my post-orchiectomy blood tests are not back yet, and my second-opinion path report is not done yet. I've read through all the nonseminoma articles on the TCRC web site, and asked Doug Bank for a few more, and I know there are a couple things I'm looking for at this point. Does the second path report confirm that I don't have vascular invasion? Does it confirm the embryonal carcinoma? What percentage of the tumor is embryonal? If my tumor markers drop, and indicate that I'm clinical stage I, am I high-risk or low-risk for relapse? How much of my risk would be based on the embryonal and VI factors? Does the seminoma have any effect on risks or treatment? How many people with my pathology relapse under surveillance or are found pathologic stage II by RPLND? And then there are all the questions about life after RPLND: how accurate is diagnosis based on RPLND? Would I need further treatment afterwards? What's the likelihood that RPLND cures the disease, if I am stage II? I have dozens of questions written down, and many of them depend on the path report and blood tests.
Still, the appointment with Dr. Richie was so short that I didn't get any answers at all, even to hypothetical questions. They squeezed me in right away, on the 15th (only a week after my orchiectomy), but there was nothing to talk about. It was only as long as it took Dr. Richie to explain why he recommended RPLND. He said that embryonal suggests a 30-40% chance of relapse, that there's only a 5% chance of relapse if the RPLND shows no cancer, and that his recommendation was "80/20 between RPLND and surveillance". I still don't know what that last one means. My appointment was over, and I closed up my notebook and found the way out.
Naturally I'm keeping in mind what I read somewhere on the TCRC, about the basic urologist/oncologist schism where urologists prefer RPLNDs (their area of expertise) and oncologists prefer chemo (their area of expertise). So I'm looking forward to seeing an oncologist, and my primary doctor refers me to a local oncologist, so I can get her advice and ask her to manage my treatment if I go with surveillance.
In the meantime, I get one piece of news: my post-orchiectomy blood tests are done, and the marker levels fell back to normal. Together with the clean X-ray and CT scan I had a week before the orchiectomy, these tell me I'm clinical stage I. This is two weeks after my orchiectomy - I had to wait one week to actually do the blood test, and another week for the results.
On the 28th, I meet my oncologist for the first time, and I'm armed with questions about treatments. She's not a TC expert, but she was able to completely describe both chemo and surveillance. We had enough time for her to describe everything that would happen in detail. However, she recommended RPLND, too. She said that as far as she knew, the embryonal was a high risk, and if I was high risk, I ought to have the surgery. So that was two urologists and one oncologist in favor of RPLND. This was even in light of my second path report, which she had received that day, and which confirmed that I did not have vascular invasion and only 45% of the tumor was embryonal.
I still felt certain I was missing something. The articles I'd read on clinical stage I nonseminoma indicated that vascular invasion and percentage of embryonal were the big factors in relapse. The most relevant articles were the 1996 "Prognostic Factors in Low-Stage Nonseminomatous Testicular Cancer" from Drs. Judd Moul and Axel Heidendreich, and Dr. Moul's comments on the 1999 "Testicular Cancer: What's New in Staging, Prognosis, and Therapy" (Drs. Richard Foster and Craig Nichols), both in the journal "Oncology". Their research indicated that my pathology, VI- and <= 45% embryonal, was 91.5% likely to be pathologic stage I (i.e., no relapse). [Editor's note: Actually, I calculate his odds as 82.5%] The articles also suggested that there was no difference in cure rate between surveillance and RPLND treatments for clinical stage I nonseminoma.
So I couldn't see why I should do the RPLND. Basically, I was around 90% likely to be cancer-free. Let's say I fell in that 90% and was cancer-free. If I went through the surveillance protocol, nothing would turn up, and I would simply get more confident about not relapsing over time, starting out with about a 10% risk, and falling as time passes. If I went though RPLND, nothing would turn up, and similarly, I'd do follow-up surveillance, and I would get more confident over time, except maybe I'd start out with a 5% risk. So in that case, the advantage of RPLND is that I feel a little more confident, and my surveillance protocol is less taxing, without the CT scans.
And let's say I fell in the other 10% and still had cancer. If I went through surveillance, it would show up eventually, and I'd go through chemo, and my chances of relapse would then be negligible. If I did RPLND, there's a chance it would show up, and a chance it wouldn't. If it did show up, I might be able to get away with follow-up surveillance, or I might need chemo anyway. If it didn't show up in the RPLND, then it would show up eventually in follow-up surveillance, and I'd do chemo. So in that case, the advantage of RPLND is that there's a small chance it turns up the cancer earlier, and there's a small chance that the RPLND is actually a cure and I don't need chemo, and there's a small chance the RPLND allows a less taxing chemo of 2 cycles instead of 3.
So 90% of the time, I'm trading off RPLND vs. CT scans. Maybe 5% of the time, I'm trading off an early RPLND vs. a late chemo. 2.5% of the time, I'm trading off an early RPLND and chemo vs. a late chemo. And 2.5% of the time, I'm trading off an RPLND and late chemo vs. a late chemo. RPLND sounded like too big a surgery for that kind of payoff.
My urologist recommended I see someone at Dana Farber in Boston. My oncologist recommended Dr. Phil Kantoff at Dana Farber, and Dr. Kantoff was on the TCRC experts list, so I made an appointment with Dr. Kantoff for Dec. 7th. Note that it's a full month after my orchiectomy, and I'm still trying to decide what my treatment should be. Dr. Richie had said he could get me scheduled for an RPLND within 7 weeks, so it seemed that I'd better decide soon or I'd be on a surveillance treatment by default. I was hoping for a phone consultation, since I'd rented a car and driven out to Boston to see Dr. Richie. I felt a bit burned by that, but Dana Farber doesn't do phone consultations, so I drove out to Boston again. My urologist faxed my records over, and they already had access to the pathology slides at Brigham & Women's, but I carried my CT scans and ultrasounds with me. I also came armed with pages of questions, intending to come out with the answer to: "I think I'm at low risk for a relapse, and I'd prefer to do surveillance. If I do surveillance, what am I losing?"
Dana Farber is excellent. It's comfortable, everyone knows exactly where you should go, and they give you enough time to discuss everything. I saw two doctors there, first Dr. Gilligan then Dr. Kantoff. Dr. Gilligan gave me a physical exam first, and talked over my history and discussed my tests and scans. Already Dr. Gilligan was saying I was actually low risk. This was the first person I'd talked to who said that, so I was extremely encouraged. Dr. Kantoff saw me and said the same thing.
Because I didn't have vascular invasion and I had under 50% embryonal, I was low risk, they said, with maybe 20% chance of existing cancer. Their overall recommendation was that there was no point to chemo for so little a chance of cancer, but that surveillance and RPLND were equally reasonable, and that I had 98% chance of cure either way. RPLND would give me more information right away, but I might end up feeling I'd had an "unnecessary" surgery, and it's a big surgery with side effects, like possible infertility. And surveillance, on the other hand, would require many more tests. The deciding factor was really my comfort level with the two approaches, and I already felt that I was more comfortable with surveillance, so I had my answer.
Of course, there are some other details from our talk. They said vascular invasion was the most important factor in predicting further cancer, and that percentage is the best way to use embryonal as a factor (as opposed to plain presence/absence, or total volume). They said volume of the tumor isn't prognostic, which I worried about because my tumor was really large (4.5 cm x 4 cm x 3.5 cm) and a couple articles claimed that volume might be a factor. They laid out what would happen if surveillance turned up cancer: whether markers went up alone, or markers went up and a scan showed something, I would do chemo. It would be 3 cycles, since 4 cycles is for high-risk cancer, and I wasn't even close to needing that. The only surgery that might be done at that point would be to clean up residual tumors not touched by chemo. They said there's only a 2% chance of chemo resistance (hence the 98% cure rate for TC overall), so that shouldn't be a factor in choosing surveillance vs. RPLND. If I were to relapse, basically what I would see is a marker rise or a bigger lymph node, and I would still be good risk, with 93-95% chance of cure.
Their recommendation for a surveillance protocol seemed pretty standard: monthly blood tests, exams, and chest X-rays. plus 3 CT scans in the first 6 months, 2 CT scans in the second 6 months, and 4 CT scans in the second year. They said I didn't have to worry about the quality of the tests at a local hospital, or the care provided by a local oncologist, since the key burden is on the patient, to simply drag themselves to their tests on time.
As for the choice of RPLND, they said I should just make sure to get it within 6 months, and that whether I get it 6 weeks or 8 weeks after the orchiectomy doesn't make a difference to its effectiveness. They laid out what would happen based on different RPLND results. If I had fewer than 6 affected nodes, all smaller than 2 cm, I would be stage IIA, and could do surveillance, and there would be a 85%-90% chance I was already cured by the RPLND. Otherwise, I would have to do chemo. I would do either 2 or 3 cycles, depending on how much of the cancer the RPLND was able to remove. Chemo, if needed, would follow RPLND within a month or 6 weeks. They explained that getting lymph nodes removed in an RPLND isn't a big deal in itself, because they're only a small fraction of the nodes throughout the body, and "the lymphocytes are regenerated".
After that visit, I had a little "low risk" celebration with my girlfriend, and made a follow-up appointment with my local oncologist where we planned a surveillance treatment. We followed Dr. Kantoff's recommendations, except that we decided to lump the chest scan in with the CT scan every other month, rather than do a separate X-ray for the chest on those months. The decision was just for convenience ("I'm lying on the table anyway") rather than any concern about test accuracy.
I scheduled a CT scan and blood tests for December, since I'd had a CT scan in October, and blood tests in November, and my protocol was off and running. Every month I went to my local hospital and did the blood test and either an X-ray or a CT scan. Then I followed up with my oncologist for an exam and to go over the test results. Scheduling is easy, I can walk in for the blood test any time, and I'm always asking for the scan a month ahead of time, so there's no problem there.
It may seem like I was simply holding out for the answer I wanted to hear, but there were two key things about seeing Drs. Kantoff and Gilligan that made me weigh their opinion heavier. The things they said fit with what I'd read in the journal articles. And they knowledgeably discussed every aspect of the cancer prognosis and treatment in detail, addressing all my questions about vascular invasion and tumor size and tumor composition. They seemed expert at planning treatment and judging risk and taking in all the information.
I've been on surveillance for a year now, and it's been a piece of cake. I'm late for work twice a month, one morning for tests, and another for my oncologist appointment. My oncologist and my hospital are a bus ride away, so I zip down there without any trouble, and sometimes I walk there. Some CT scans are better than others. The barium seems to affect me more than it used to, but a few trips to the bathroom and I'm ready to hit the road again. And some people are more gentle about hooking up the IV contrast than others, but usually that's not too uncomfortable. The outpatient lab people know me when they see me coming and take out my standing lab slip for AFP, BHCG, and LDH blood tests. Everything has been on my insurance. Now I get to fall back to tests every other month, though I think I may find that more confusing in the long run: every month is much easier to remember.
My only problem turned up earlier this year. I'm practically infertile. It's not because of the orchiectomy or because of the cancer (strictly speaking), it's just that my testicles don't function right, sperm-wise. My girlfriend and I were having some family planning talks, and we decided just to check exactly where we stood, so I asked my primary care doctor to let me do a semenalysis. I got the test at my local hospital, and a week later, my doctor calls me at work and says, "I got your results back, and I don't understand them. It says, 'Normal specimen.' And under sperm count it says, 'None seen.'" "None?" "It says, 'None seen.' I don't know what that means." So we do another semen test, but my confidence in the results is shaken. She calls with the results again. "It says the same thing, 'None seen.'" So I go to my urologist, and in the meantime look up everything I can find on the Web about male infertility. It looks like I'll end up finding out it's my pituitary (hormonal), a problem in the plumbing leading out of the testicle, an obvious genetic problem, or just something wrong with the testicle. The web site I was reading said that 40% of cases of male infertility are "idiopathic", which of course means, "it's just plumb broke, son".
My urologist orders blood tests for hormone levels as well as chromosome analysis on the blood and a third semen test, a fructose check (which should help test whether I have a blocked cord or some other plumbing problem). The chromosome analysis turns up nothing, but that's not surprising, because those defects would usually be accompanied by other problems. The fructose level is fine, indicating no blockage. The sperm count again turns up as "Too few to count". He says he'll press the lab for an actual count, because there's a big difference between zero (azoospermia) and one or two (spermatogenic arrest). And at the same time, most of the hormone levels are normal, but he notes a prolactin that's slightly high, so he asks me to see an endocrinologist. The thought here is that I might have a pituitary tumor raising prolactin levels, and that this excess prolactin might be causing the infertility.
The endocrinologist checks me out and says the prolactin is actually normal. He says that the orchiectomy always causes a slight increase. If the level were at like 20,000, then I'd have a problem, and that could cause infertility, but the elevation is something like 30 instead of a high-end of 25. He even does a blood test for tumor markers, which indicates a pituitary tumor is totally unlikely. At the same time, there's a clarification on my semen test, where it seems there were one or two sperm. The upshot? I have spermatogenic arrest, due to a problem with the testicle itself. The infertility probably affected both testicles, so at least I don't need to worry that I lost my one good testicle. The problem is probably also due to the same root cause as my TC. To find out more, I'd have to get chromosome analysis on the testicle itself, involving surgery and a frozen section biopsy. Since there doesn't seem to be any payoff there, other than satisfying my curiosity, I think I'll skip getting my testicle hacked.
The one thing I remain concerned about, aside from the fact that I won't be able to have a kid without special IVF procedures, is whether having the infertility increases my risk for getting TC in my remaining testicle. I mean, the infertility itself isn't going to *cause* a relapse or another case of TC, but I worry that the rate of relapse or second occurrence is higher in guys with fertility problems, pointing to a root cause that's more aggressive or dangerous. [Editors note: Indeed, I think the risk IS slightly higher]
Well, to wrap this up, I'd recommend a couple things. In the first place, if there's anything unusual about your testicle, definitely see a doctor as soon as possible. Getting a testicular ultrasound isn't a big deal, and is really key to finding problems. Once cancer's a possibility, get your hands on all the relevant articles on the TCRC. Maybe even brush up your statistics so you can cope with all the prognostic factors and sample sets and all those other things that get written about in the research. See a specialist; see an oncologist. Not every doctor has expertise and up-to-date detailed knowledge about building a prognosis out of all the different factors in TC. If you're anywhere near Boston, Dana Farber is great. Keep looking for doctors until you find a good listener, and someone who's willing to address all the things you find in journals or hear from other doctors. Don't immediately rule out surveillance, since it's fine for lots of people. If a doctor says you shouldn't do surveillance, be sure to get him to explain exactly what problems you would have with surveillance. If you can, get semen analysis early on, so you know where you stand with fertility, too.