Scott's Testicular Cancer Story...
Written by Scott
At bedtime one night in March 2003, I suddenly noticed that my right testicle was more than double normal size. I'd stepped up for the first time from speed walking to running on my treadmill and was feeling good about that, but now I wondered if I'd somehow done damage, unlikely as that seemed. It worried me enough that I called my doctor the next day and asked for an appointment. In retrospect, I wish I had accepted the invitation for a referral to the urologist who had performed my vasectomy four and a half years prior, but instead I went in first thing the next morning to the doctor who had said just a few months before at a routine physical, "You're in excellent health; see you in three years."
"It's a hydrocele," he proclaimed after shining a light through my scrotum in the dark. "If it gets in the way, it can be fixed with a minor surgical procedure. Give it a while." I read up on hydroceles, simple accumulation of fluid, accepting that was the problem and never imagining that inside the hydrocele might be something more serious.
I gave it three weeks before calling again to request the urologist referral. My hope that the swelling might go away on its own was gone. It seemed a bit larger and was increasingly annoying, though not painful. The earliest available appointment was several weeks away, on May 16. Repairing a hydrocele didn't seem urgent, so I took it, later rescheduling another week out to work around a family travel commitment.
By the time Friday, May 23 arrived, I was feeling quite uncomfortable, ready to get this "minor surgical procedure" behind me, so after a brief physical exam, I was disappointed to hear, "We really need to do an ultrasound just to be safe. We can schedule that for the middle of next week."
"Well, OK, but is there anything we can do in the meanwhile?" I asked hopefully.
Although, again in retrospect, this was not a good idea, the doctor agreed to aspirate some of the fluid. However, when what he withdrew included blood instead of just amber fluid, he stopped. "We need to wait for the ultrasound."
I only realized how this latest twist was affecting me when I had to sit down in the hallway as my ultrasound was being scheduled, as my head was getting light. The pain began soon after that visit.
The following Wednesday I went to the hospital for a testicular ultrasound, administered by a woman who, as I expected when I asked, "Can you tell me anything about what you see?" replied, "I just do the examination; someone else interprets the results." The only clue was her question, "Has the swelling always seemed hard like this?"
The doctor called the next morning for a conversation that included a couched version of the life-changing words, "You have cancer." It wasn't certain yet, but it was looking increasingly likely. I took the news bravely, but within moments of hanging up the phone, I burst out sobbing. As my wife rushed in, all I could think about was what it would mean to her and our four kids if I needed extended treatment, or worse. I called the office and said I wouldn't be in.
I began soaking up every bit of information I could find on the Internet about testicular cancer. Clearly, if one must have cancer, this is the one to have; cure rates are extremely high in early stages and quite good even in advanced stages.
My wife and I went in to talk to the doctor that day, leaving our children with a friend. He drew a blood sample, which I later found showed elevated tumor marker levels -- including a very high AFP level of nearly 9,000 ng/mL -- that strongly suggested testicular cancer. We scheduled an inguinal orchiectomy, removal of the affected testicle. I would gladly have gone that day, but the doctor and the operating room were not both available until the following Thursday, June 5. I got a prescription for oxycontin to manage the pain. I assume it was caused by the internal hemorrhaging later described in the pathology report.
Glad to keep my mind occupied, I returned to work on Friday and worked through Wednesday of the following week. I prepared to be out from work for two weeks and made sure I had everything set up to work from home in case that was both necessary and possible in the weeks ahead.
I freely shared the news that I was having surgery for what was almost certainly testicular cancer. It was surprisingly easy, and oddly comforting, to talk about it. One friend asked, "Did you ever think you'd use the word 'testicular' with me?" I certainly never did. Now I was throwing it around as if it were "doorknob."
Early in the morning on June 5, my wife and I went to the hospital for my surgery. Maybe it was just to be sure I really knew rather than because they didn't, but I was surprised when hospital staff asked me, "So, what are you here for today?" as they prepared me for the operation. I answered the same questions about my medical history, allergies, etc. maybe three times. Checking for consistency? In my hospital gown, with my IV in place, I listened as the anesthesiologist explained what he would do, and before long, it was done. I remember being rolled down the hallway -- I remember waking up and putting my glasses back on. Before long, I was getting up, using the bathroom, getting dressed again, and heading home. Thanks largely, I'm sure, to medication, I was already feeling much better than before surgery, despite the incision, stitches, and plastic tape bandage.
Then the eternal wait... It would be a few days before the pathology report was ready, and my CT scan wasn't until Monday. Had it spread? The tumor was so big, how could it not have? My wife picked up two quarts of "citrus-flavored" barium contrast solution on Saturday. It wasn't tasty, but it was bearable. I drank a quart Sunday night at bedtime and the second Monday morning before we headed to the hospital again. Since my clothes had no metal in them, I got to stay dressed for the CT scan. After yet another drink, this time of something vaguely fruit punch-flavored, I lay down and suffered through three attempts, the last finally successful, to insert a needle into the vein in my right arm to insert dye into my blood. As I had been warned, I experienced a metallic taste and felt heat surge through my chest, from the contrast, during my first pass through the equipment. The scan was over quickly, and I headed home.
The news finally came later that day: nonseminoma, stage I, no lymphovascular invasion, clean CT scan. The tumor was 9.5 x 6.5 x 5.9 cm (ouch!), having doubled in size between my first visit to the urologist and my surgery. It was 80% yolk sac, 15% teratoma with low grade immaturity, and 5% embryonal carcinoma. My AFP was so high because of the percentage of yolk sac. Yes, the tumor was big, but it was contained. Finally some good news!
Feeling considerably better, I stopped the pain medication and returned to work on Tuesday, having missed just three business days for the surgery. At the end of the day, I was more tired than I had expected and worked just a half day on Wednesday, but full days from then on.
After surgery on June 5, my next appointments were on June 20 with an oncologist to discuss treatment options and a follow-up visit with my urologist on June 25. They drew blood at the June 20 appointment, and the urologist got to give me the good news on June 25 that two of three markers (LDH and hCG) were back to normal, and the third (AFP) was on the right track, down from almost 9,000 to a little under 500 ng/mL.
I was given three choices: 1) RPLND surgery, 2) two cycles of adjuvant chemotherapy, or 3) close observation or "surveillance," with chemotherapy as a fallback option in case of recurrence. Back before there was such an effective chemotherapy option, RPLND, a much more invasive procedure than the orchiectomy, was routine. As I was willing to follow the strict surveillance schedule -- for the first year, blood markers and chest x-ray every month, CT scan every three months -- that's what I chose. With a 70% chance that the orchiectomy alone had cured me and a great safety net in chemotherapy if it turns out otherwise, I could see no compelling reason to put my body through more serious surgery or chemotherapy now.
A few post-surgery notes: I had a hematoma, blood accumulation, that the oncologist initially mistook for a prosthetic testicle. I understand that's quite common. It's all but gone now. For a couple weeks after surgery, I needed to urinate frequently, often getting up two or three times in the night. I found boxer shorts much more comfortable than briefs, mainly because they didn't pull on the pubic hair as it grew back in, I think. I also had a flare-up of back and chest acne. I still wonder about its cause -- hormones adjusting?
A New Normal
While I'm sure it's easier on the body, surveillance can be hard on the mind. It's easy to blame every headache, muscle spasm, and pimple on an imagined recurrence. As of this writing, I'm only two months into the routine, and I've only just had my first chest x-ray (clean) and the return of all tumor markers to normal levels. Though a statistical 70% chance that I'm cured is encouraging, I remember every day that there's a 30% possibility cancer will return, most likely within the next two years.
However, I've already noticed some positive differences that I hope are permanent. Having been inspired by testicular cancer survivor and champion cyclist Lance Armstrong's story, as recorded in his terrific book It's Not About the Bike: My Journey Back to Life, I pumped up the tires on my long-neglected mountain bike and took to the road. I also joined the Peloton Project, the Lance Armstrong Foundation's fundraising and outreach program to help people living with, through, and beyond cancer. As his book says, in some ways, "We're the lucky ones." Being part of the "cancer community," many feel a increased sense of responsibility to give something back. I sure feel it now, and I don't want to lose that.
A good friend from college whose cancer treatment came a year or so before mine told me she had found that being a cancer survivor "forces one to assume a new normal, not necessarily worse, just different." She's right. In some ways, this has been the most terrifying, humbling experience of my life, but in other ways, it has been the best thing ever to happen to me. I'm awake and aware. May it remain so, as long as I live!
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