Testicular cancer, from a misdiagnosis to a cure

I had testicular cancer, but my doctor was sure I didn’t. “This is definitely a hydrocele, Mr. Streever. It’s a benign sac of fluid, and I’m sure it’s painful, but they’re absolutely harmless. You’ll need a simple outpatient surgery to have it drained. We’ll refer you to urology for the follow-up.” I dressed while he told Hilary, my wife, and we left the office with the same overjoyed smiles.

I should have been more skeptical after his previous diagnosis, the month before, of a pulled groin muscle. The prescription for that was tylenol, rest, and a follow-up visit if the pain persisted; it had. After a month of mostly dull but sometimes sharp pain, I hesitantly returned. I didn’t want him to think I was a hypochondriac or a wimp, but I’d been worrying about cancer, which seemed unlikely but increasingly possible after some alarming google searches.

The Thursday of the follow-up appointment ended up being hectic and busy, and I almost skipped it. My pain was minimal, and I was so relieved by the hydrocele diagnosis that it seemed a safe choice. Hilary and I were travelling to New Haven for a long weekend and an old friend’s birthday, and another friend had asked if she could stay at our house during her fencing tournament while we’d be away. The appointment was at 3 p.m. on a Thursday, and our route through D.C. and New York City meant we’d arrive close to 1 a.m.

Hilary was adamant that I not skip the appointment. Not only was it rude and risky, it would set back even farther my recovery. I had a hard time lifting anything heavy, and I still felt a strange, hot, pain in my groin. I appreciate her perspective within minutes of meeting the doctor, who took one look and gave me the bad news. “Sorry dude, this is no hydrocele.” He couldn’t definitively diagnose me, but he thought it was a textbook example of testicular cancer.

We discovered that we were both cyclists, so we discussed the prognosis in terms of Lance Armstrong, the professional cyclist who won the Tour of France after a grueling fight against a rare Stage III diagnosis. Of course I was afraid that I might have the fast spreading embryonal carcinoma Armstrong nearly died from, with survival rates around twenty percent, but my internet research had told me the most likely was a relatively safe Stage I diagnosis, with survival rates in the high ninety-ninth percentile.

He wouldn’t commit to anything, but he noted that Armstrong, unlike me, was coughing up blood at this point. “Just go to your party. Dance, have fun, celebrate. I’ll see you on Tuesday for the ultrasound.” I was devastated, but faked a cheery smile and lied about the results when I came home and found our guest with Hilary. I didn’t want to break the news in front of someone she didn’t know well, and saved it for our long drive north. We talked, we cried, and finally we fought, just after midnight, as we crossed the New York border into Connecticut. Nothing was certain yet, and fear and stress made every topic dangerous. We sat in the parked car for half an hour before we quietly entered the house where we were staying, careful to not wake the friends who were hosting us.

I called my mom, a new resident of Oregon, right away with the news, and held off on telling a small number of friends until after the birthday party, trying to keep my diagnosis in perspective. Saturday we drove home, and on Tuesday I went back to urology. My blood work had come back positive for tumor markers, and the ultrasound confirmed an abnormality in the left testicle. We scheduled a radical inguinal orchiectomy to remove it the next week.

Frustratingly, I still couldn’t get answers to basic questions. Would this impact fertility? How long would recovery be? What were the next steps after the surgery? Throughout the process, I found that my surgeon was unwilling or unable to engage my concerns and discuss cancer beyond the precise facts he had discovered. He told me he wouldn’t be certain until he’d removed the tumor and received a full pathology report on it from the lab, and there was no timetable for how long the report would take.

I can appreciate that there is an inherent amount of uncertainty, but the lack of clarity around timetables and scheduling was maddening and unnecessary. I didn’t understand why my questions about fertility and chemotherapy weren’t answered, and felt that the simple act of asking them irritated my caregivers.

I spent the next week anxious, waking up at 2 a.m. and reading about testicular cancer. Sources varied wildly; my oncologist would later give me resources to do my own research, but without professional guidance, I found myself reading dubious personal accounts and outdated medical websites.

The day before surgery we set up a text message chain to make it easier for Hilary to let the small circle of friends and family know about the operation. I’d be under anesthesia for forty-five minutes and might wake up in a post-op fog, unable to handle communications. At 7:51 I met the nurse, “Jane, like Tarzan”, who told me I’d be OK and that I would remember her name when I woke up. She wheeled me into the operating room and promised she’d honor my request for a tattoo that said “I Love Mom” while I was under.

When I woke up in the recovery room, she asked me a few standard questions to test my alertness, and then we broke the script. “Did you give me that tattoo?” “Oh, the naked lady one?” “No, it was supposed to say ‘I Love Mom’, in cursive.” The assessment finished, I went to discharge, and was soon sent home to a grim Christmas week with only a padded pillow, a Norco prescription, and a vague warning about constipation.

Nobody warned me that the Norco would lead to severe constipation on day three, or that the colace only works as a preventive measure. The nearly 5-inch incision in my groin meant a high risk of internal bleeding and injury from constipation, so I took the maximum dose of laxative, which caused a 48-hour bout of diarrhea. I was also unprepared for the real physical limitations I’d experience, told only to avoid lifting more than 10-lbs or doing light exercise for the next 4–6 weeks. I assumed I’d have followups with surgery to assess recovery and fitness, but this never happened, which is mystifying considering the consequence of overexertion would be a second operation and heavy bleeding.

I couldn’t get into or out of bed by myself, and the surgery had me needing to urinate frequently through the night. I slept on the couch for a few nights, then the guest bed, and finally managed to get upstairs to our bedroom on day five. I kept my feet elevated and shuffled about as best I could to prevent blood clots. The worst part was still the wait, though; no one knew if I’d need chemotherapy or if the cancer had spread. I was worried that the lower back pain I’d had since before the surgery meant the cancer was in my lymph nodes, a fairly common scenario with testicular cancer, and I was incorrectly told that this would have no impact on fertility.

My next appointment would be one week after surgery, for a CT scan and retest for blood tumor markers, which could rule out spread. Preparation for the CT scan was rough. I’m allergic to shellfish but have never been tested for an iodine allergy, so in addition to two litres of chalky barium sulfite, I’d need to take a series of sleep-inducing anti-histamines. I was dopey and drowsy, but the scan went without a hitch, and I went home to sleep off the medicine.

We ended up not seeing the original oncologist. The urology staff had scheduled me for an appointment during her vacation, and that would push back my appointment by at least a week. I was outraged, but the staff was unruffled. I was grateful again for Hilary, who found me a last minute appointment at a local teaching hospital on the same day as the original appointment.

The oncologist had some good news: the cancer hadn’t spread, but there was a kidney stone, which explained the lower back pain and urination problems. He answered all of my questions, and was able to explain risk factors and probabilities in depth, treating my concerns and questions with requests. Yes, chemotherapy would certainly affect fertility; no, I probably wouldn’t need it. He assured me too that my internet research had turned up outdated information; doctors used to base recurrence rates on tumor size, but no longer, so despite having a massive 6.5-cm tumor, he estimated my odds at less than ten percent. Pathology confirmed a seminoma in situ, meaning it was confined to its point of origin, and the blood tumor markers were all negative following the orchiectomy.

I left his office with a full schedule of future observation visits, and a folder of printed resources and websites to refer to in the future. I’ll need biannual CT scans for two years, but I won’t need chemo, and I’m able to go ahead with a planned bike trip on Spain’s El Camino. Residual pain lingers, especially where the scar is, and I have to be careful when lifting anything heavy. Outside of a slight numbness on my left leg, almost unnoticeable, I haven’t had any other side effects, and took my first, hesitant, run, exactly six weeks after the operation.

The worst part of this was the anxiety and confusion, stemming from a combination of physician arrogance and my own unfamiliarity with medicine. I didn’t have a primary care physician, and hadn’t been to a doctor in many years. My first misdiagnosis was also my first visit to this general practitioner, who had no medical history to work from, and knew me only as an anxious patient coming in with poorly defined symptoms. Cancer poses special challenges to the generalist. It’s not a single illness, but rather a whole series of poorly understood maladies, and our understanding and treatment of it is continually evolving. My urologist, the surgeon, is a specialist, but a specialist who deals with high-pressure operations, where seconds count and a rapid response to emergent situations is required. He wasn’t the right person to ask about the future, but instead of explaining his limitations, he just treated my questions with contempt.

As unnecessarily frustrating as this experience was, I have a lot to be grateful for: Hilary’s support at home and with the doctor; the respectful oncologist she found; food and company from friends and family; a dedicated GP who stuck with his new patient; a deft and skilled surgeon; and my fast, rapid recovery. I haven’t experienced any side-effects or limitations, except the minor inconvenience of ongoing monitoring, and seem to be in full recovery.

Ten weeks since surgery, the doctor who misdiagnosed me says I’m cured, and the oncologist says that recurrence is unlikely. I’m hopeful that they’re right, but I’ll be OK if they’re wrong. I’m not afraid of the cancer recurring. I know what the process is like, and I know I have the resources and support to help me through it.