Jim's Testicular Cancer Story
Written by Jim
My mother died of breast cancer at the age of 39 (I was 16), so I was well aware that cancer was not just a disease of old age, but I still never expected it to happen to me at age 26. In the fall of 1987, I had just started a doctoral program in physiology. Eight months into the program I noticed that pressure on my right testicle caused a sharp pain that went up into my abdomen. I didn’t know too much about testicular cancer back then, except that one of the guys on my dorm floor, in 1980, had died from it. But I knew how to do a TSE, so after a hot shower I checked my testicles, and sure enough the right one felt abnormal. I can’t feel a discrete lump, but the center is more firm than the ends, sort of like there’s a marble deep inside. I muster the courage to go to the university health center and get it checked. The doctor feels my testicles and says, “I think you need to see a urologist.” Well that’s just wonderful, because I have no health insurance. But I make an appointment, and after a 15-minute exam, the urologist says, “Most of these lumps are cancer and the sooner we remove the testicle the better.” At this point, I’m in shock. He not only wants to remove my testicle, he thinks I have cancer, and on top of that I have no idea how I’m going to pay for any of this. That was Tuesday. Wednesday, I go for blood tests, AFP, beta-HCG, and all the clotting checks they do before surgery. Thursday I’m admitted to the hospital and the testicle comes out. I spend Thursday night in the hospital; Friday I’m very sore, but after a CT scan, I get to go back to my apartment.
I sweat out the week until my next appointment and get the pathology report (at this time, I’m still hoping it might not be cancer). Dr. Wild (great name, huh) walks in and sits down. He opens his notes and says, “Well, Jim, the tumor was embryonal cell, teratoma, and seminoma, 1.7x1.8x2.1 cm (fairly small), but your tumor markers and CT scan were normal.” He explained in more detail the different cell types and what they meant, as well as the staging. This was way too much information for me to take in considering my emotional state (even being a physiology major was not helpful at this point). I just returned a blank stare when he described the RPLND, and so he suggested that a lymphangiogram might provide some useful information. I had the lymphangiogram, a test (not routinely used today) that puts dye into your lymphatic system to make your lymph nodes visible. A week later, back to the doctor’s office for the results. Dr. Wild’s grim expression tells me right away it’s not good news. He says there are abnormalities in several nodes and after consulting with the Cleveland Clinic the recommendation is for the nodes to come out for evaluation. He looks at me for an answer, and I tell him, “I don’t have insurance; I have no idea how I’m going to pay for any of this.” His response was, “We’re going to worry about getting you well first, and we’ll worry about how to pay for it later.” Dr Wild was a great guy.
So far, I’d only told a few people about any of this. I was part of the “suck it up, tough it out, go it alone” generation; not even my family knew. But since the RPLND was major surgery, I had to break the news. My grandmother took it the worst because my mother had died of cancer. But I told her the cure rate was very good and that the odds of a cure were good. After she talked with her family doctor, she was more upbeat.
In June 1988, I had the RPLND. Going to sleep was pleasant enough; waking up was not. I was in a lot of pain, and they were trying to get me to swallow the NG tube, which took several attempts before it went down. In addition to the NG tube, I had a urinary catheter, several IVs and a surgical drain. I’m sure I looked like Hell. I definitely felt like it. The second day in ICU, Dr. Wild walks in, all smiles, and tells me they found no evidence of cancer in the lymph nodes, and he feels comfortable at this point going into a surveillance protocol – no chemo, which made me very happy. For the next three and a half years, I religiously follow the routine while I finish my Ph.D.
My life was relatively quiet until August of 2002. One of my closest friends for over 15 moved in with me, and we decided to get married. The next eight months were very hectic, planning and organizing the wedding. Since my first TC, I had done self-exams on my left testicle every month or two. But now I was so busy, and in my early 40s, probably out of the high-risk age range, so I had been slacking off quite a bit. Even though I kept meaning to get back on schedule, something always seemed to interfere. In August of 2003, my wife started teaching for the fall semester and things began to settle down. By now it had probably been nine or ten months since my last TSE. Sunday, August 17, I was sitting on the bed, and as I rolled to the side, my shorts pinched my left testicle ... PAIN! It had gotten pinched hard, so I thought nothing of it. Monday night, the 18th, I’m sitting on the floor in the living room, testicle got pinched again ... PAIN! This time my brain kicked in and I did a TSE. OH, MY GOD, NOT AGAIN, it can’t possibly be happening again! The feeling was unmistakable: the solid area deep in the testicle, the shooting pain to my abdomen, the nausea, and the chill running down my spine. I have no doubt whatsoever that it’s TC again. Tuesday, August 19, I call a urologist and get the first available appointment. I still haven’t told my wife; I can’t figure out how to do it. Tuesday night we walk the dogs and I tell her I have a doctor’s appointment on Thursday with a urologist. “Why?” she asks. I tell her about the lump and that there is a 95% chance it’s cancer and what kind of tests they will run and so on. But my wife is an optimist, and I can tell she already has me in the 5% that’s not cancer. Personally, I just want the testicle out.
The urologist says something definitely doesn’t feel normal and sends me for an ultrasound (something I didn’t have the first time around) and tumor markers. A week later I’m back at the urologist with the films and the report. There is a “hypoechoic” region in the testicle. I’m thinking yes, I know there is something in the testicle – I just want the testicle OUT. The tumor markers are normal. Dr. R suggests a scrotal MRI; I just want the testicle OUT. I understand he wants to be absolutely sure before removing my remaining testicle, so I agree the MRI, and we go ahead and schedule a CT scan (chest, abdomen, pelvis) which I will need if the testicle is cancerous. The MRI finally convinces Dr. R that the testicle has to go, and I’m quite happy to be getting rid of it at last. In my mind, we’ve already wasted too much time. So on September 17, 4½ weeks after I first found the lump, the testicle came out, FINALLY. Just before surgery, Dr. R told me the CT scan was normal, so that was good news; he also gave me samples of Testim 1% gel to start the next morning. The surgery and recovery were uneventful, no overnight stay this time. The Testim seemed to be working, because I felt pretty normal. September 25, I go in for staple removal and the pathology results – pure seminoma this time, an 8x8x7mm nodule (very small) with no evidence of angiolymphatic invasion, so overall, reasonably good news. When I get home and tell my wife, she’s sort of shocked and also surprised that I’m in such a good mood. I tell her I knew from the start that it was cancer, and I feel lucky to have once again caught it at a very early stage.
On Oct 6, I meet with an oncologist, to decide what to do next. As expected, he offers a choice of adjuvant radiation therapy or surveillance. At this point I could go either way. I don’t like uncertainty, but my age (42), the small tumor size, and the lack of angiolymphatic invasion make me a good candidate for surveillance. Also I’m concerned about radiation damage to normal tissue. Dr. M liked the idea of surveillance, but suggested I at least meet with a radiation oncologist to get another perspective. I expected the radiation doc to try to convince me to get the adjuvant radiation treatments, but she actually told me she thought that surveillance was a reasonable option as long as I stuck with it. So surveillance it was. On my first round of surveillance, I get a nasty scare, a 5x7 mm nodule was noted on the chest CT. Dr M says it’s probably nothing and the only thing to do is wait and see if it grows; so I sweat it out for three months, and on the next CT, it’s actually smaller. Dr. M told me that’s the one downside to the new helical CT scanners, they’re almost too sensitive. No one knows what the pulmonary nodule was, but six months later, they don’t even mention it. After that, it’s noted sometimes and considered stable.
My next major issue was with the hormone replacement. I begin having mood swings, depression, become withdrawn, and have terrible hot flashes. We tried upping the dosage, but is didn’t help. In 2006, my blood work showed elevated liver enzymes; the doctor stops my HRT and sends me to an endocrinologist. The “withdrawal” after stopping HRT was horrible, massive depression, really nasty temper, no ability to concentrate, paranoia. I just wanted to stay home and be left alone. Because of my nasty mood, I decide not to go back to the endocrinologist; I’ve had it with doctors at this point. Beginning in the fall of 2004 and continuing through 2006, I had been dealing with a herniated disc and severe sciatic pain, I’d had epidural steroid injections, I’d had a gortex mesh repair of my RPLND incision, which required re-opening the entire incision, and I’d had my gall bladder removed, an open procedure that required re-repairing some of the gortex mesh. All of this on top of my surveillance visits. So by mid-2006, I had pretty much hit bottom. Everything seemed like too much trouble to deal with; I pretty much stopped talking to everyone and had to force myself to go to work. Then slowly, but steadily, I began to feel better, less moody, less depression, a desire to do things again. Maybe my brain and body finally adjusted to the lack of hormones. By early 2007, I almost felt normal again. I’m probably still a bit more pensive and melancholy than I used to be, but I haven’t wanted to risk the wild swings I had while on HRT.
So here I am in 2008, 20 years removed from TC1 and almost 5 years out from TC2, and doing well. I consider myself very lucky not to have needed radiation or chemo; I’ve definitely had it easier than a lot of guys do. Life without hormone replacement is not all that bad, but I do worry about long term effects. Perhaps soon, I’ll give it another try. My wife has been my rock through TC2, and I think it brought us even closer; I really had no one to lean on for TC1. Also, because of this horrible disease, I chanced to meet some amazing people who have become family. I’ve learned to lower the walls I built to keep people out. I’ve learned how to reach out and help others, and I’ve also learned how to let others help me. Cancer is, in some ways, both a curse and a blessing. It can bring the darkest of times, but it can also show you a strength you never knew you had.
No matter if you’re a patient, survivor, spouse, family member, friend or significant other, as you battle this beast and the demons it awakens within, remember, you don’t have to fight by yourself. There’s an army of people who stand ready and willing to help; you are not alone.
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