October 30, 2001
I am currently thirty-two years of age and teach math and astronomy at a high school in rural Arizona. When I am not in the classroom I can be found running with the school's cross country team, working as the technical director for the Drama Club, watching movies or indulging my hi-fi music habit.
My experiences with testicular cancer began in the summer of 1998. I decided that summer to begin an exercise program, and running seemed the thing to do. I began in June of that year and man, was I sore. I suppose the pain from the running masked the other ache that I finally noticed in July. It was a dull, unpleasant, intermittent ache in my lower abdomen that felt like the "aftershocks" of having been accidentally hit in the groin. I wondered about what might be going on down there and checked things out. The left testicle, always smaller than the right, had a hard mass about the size of an almond on it that was sensitive to pressure. People asked me later what it felt like and the best I description I can muster is this: close your eyes and have someone hand you a hazelnut in the shell. The nut is a little too big, but the texture is exactly correct. Roll it between your fingers and there you are.
Being a reasonably intelligent person I used a little quick logic. I had no fever, no shocking, debilitating pain, which meant than epididymitis was most probably not an option. That left a couple of options: a varicocele or hydrocele or a tumor. I knew that things could be serious and rang my GP immediately and was in his office three days later.
His opinion was that it was harmless but that it was not worth taking a chance on. I was sent for an ultrasound, my first experience with this form of diagnostic imaging. The procedure itself is totally inoffensive but having a woman, and a woman who looked like Ilsa, She-Wolf of the SS, perform it was not fun. Her poker face and clinical silence during the procedure did nothing to boost my confidence, and I left more concerned than before.
When I arrived home an hour later phones had been flying off the walls. The doctor who read the films saw things he did not like and rang my GP, who in turn rang me. A flurry of activity followed and I found myself in the presence of a urologist who, after feeling the mass, was sufficiently impressed to want to perform an orchiectomy. Less than one week after discovering the mass I was scheduled for surgery.
What a thrill that was! It is amazing how tender the groin can be, all kidding aside. I hobbled around like an eighty year-old for two or three days, and the cat seemed to develop the sadistic habit of jumping up into my lap. I've never seen such bruising in my life, and this from a person who has been through a number of surgeries and a nasty auto accident; it looked as though someone had taken a fireplace poker to my groin. All whining aside, the wound healed quickly. Incidentally, the testicle was removed through the groin and not the scrotum so as to avoid possible invasion of the lymphatic system by the cancer. This is, as I understand, standard operating procedure.
The pathology revealed it was cancer, a pure seminoma in Stage I: no evidence of spread beyond the testicle. I was given the post-surgical options of surveillance, a "sit back and see what happens" approach with no prophylactic treatment, prophylactic chemotherapy or prophylactic radiation. I do not like the philosophy of "sit back and wait", particularly where my health is involved, and the idea of chemo terrified me, so I opted for radiation. The side effects, on paper anyway, seemed less offensive than the chemo and, being a physics minor, I knew what to expect.
After the initial visits, during which I was "mapped" and tattooed so the radiation technicians could accurately aim the beam of hard X-rays produced by a LINAC at the same spot on my body each time, I received twenty doses of 125 cGy (125 rads) each, for a total of 2,500 cGy. For those curious about what I experienced, or who might be facing such treatments, here are the facts: because the radiation was para-aortic over the abdomen the bowel was affected. The first side-effect that showed up for me was queasiness the night of the first treatment, followed by nausea sufficient to banish my appetite the following day. Torecan, an antiemetic and anti-nausea medication, was prescribed and that helped a great deal and made the next month more livable. I did not experience diarrhea. Based on observations of friends and my students at the time I grew pale and the weight loss I experienced, about ten pounds worth, made me look pretty frail since I only weighed about 160 to begin with. The most difficult aspect of the treatments for me was the great fatigue that showed up starting about a week into the treatments and that did not fully disappear for 3-4 months after they were finished. I continued to work during the treatments, going to school following the session in the morning. After school I would immediately go home and rest; I slept a great deal and had to learn how to sit down at school, a difficult thing for a runner and a teacher who does not like to sit down in class.
My friends and students stuck by me the whole time and gave me the support I needed when I felt I could hardly move, and I could not have gone through it all without my mother, who drove me to and from the treatments and saw to it that I ate properly and rested. Our friends, our true friends, are there for us when we are at our lowest points; do not be afraid to ask for help.
I was finally feeling normal some 4-6 months after all the treatments were done. Blood tests sniffing for Human Chorionic Gonadotropin, Beta subunit, a protein produced by seminoma that indicates its covert presence in the body, came out clear as did the chest x-rays looking for lung metastases. Months grew into two years, and I was getting used to negative results and thinking less and less about "What if...?"
Then came December 1, 2000. While climbing into my truck after Christmas shopping one evening I noticed a very familiar ache, this time from the right side. I must admit I was mortified; the fear, though less and less visible to outsiders, was always just below the surface. I raced home, jumped in the shower, waited until things were "warmed up", and performed a self-examination like I had so many times in the two years since the first cancer.
I had performed a self-examination only a month before; it becomes something of an obsession, this, to those of us who have lost one testicle and damn it, we want the other one high and dry and ultra-healthy! Well, this time there was a mass on "top" ( under the spongy mass of the epididymis), smooth and rock-solid, equal in size to the testicle. I was very surprised to find so large an alien in there particularly when there had been nothing a month earlier.
I did not handle myself quite as calmly the second time. I began to get something of a run-around while trying to schedule an ultrasound, and juggling the medical end with my school responsibilities was difficult as finals were approaching. Fortunately my GP and the insurance people in his office were and are first-rate and having them on my side was probably the one thing that kept me sane. My ultrasound was scheduled and a visit to a urologist, the same I had before, was set up.
The ultrasound reveled not one but three sinister dark masses in the scrotum, and the urologist, stunned to see me again after two years, agreed that the mass was there and suspicious. He was dubious, however, that another cancer was present. After all, both of us were brought up with statistics, and a second case of testicular cancer in the same man was very rare. Consequently, he spoke with some colleagues in other parts of the country and they all agreed: it was not worth risking not taking action if another cancer was present. With great hesitation he scheduled some blood work and surgery.
The blood work showed no sign of any protein tumor markers, but the risk was so great that he went on with the surgery. I will never forget the poor fellow coming up to me the morning of the surgery, sadness and desperation on his face, and asking me, "So. Did a miracle occur and you woke up and the thing was gone? Now I don't have to do this to you?" Alas, no. Surgery number two went just as the first had twenty-nine months earlier.
The pathology revealed another seminoma, also Stage I. Though now anorchic, a eunuch, a Mounds [Almond Joy has nuts, Mounds don't...] or whatever joke you care to insert, I was still alive and facing follow up treatments.
Radiation was out of the question. The body does not take kindly to such large amounts, even over a small area, and it "remembers"--the damage is cumulative. That left surveillance, out of the question to me for the same reasons as before, and chemotherapy, a terrifying prospect to me.
My oncologist kindly did some research on the Internet for me and found an approved chemo regimen that used carboplatin and ifosfamide and that would be far less toxic than the usual combination of cisplatin, bleomycin, and etoposide. All I can say is, God bless him. The treatments, which lasted from January to March, 2001, were unpleasant enough with the kinder drugs. [Editor's note: I do not know where his doctor found this regimen. It absolutely is not a standard protocol.]
Thank heaven I had the support of my mother and close friends once again. This support, allied with the extreme kindness of the nurses administering my treatments, went a long way in making my life more livable. The weakness and nausea caused by the drugs would build over the three days of treatments and would linger with me until the next set, after one month of down time, would begin. Unlike the radiation the side effects were cumulative, growing worse and clinging to me longer, with each set. A side effect I had not read about and was not anticipating was the bad taste in the mouth that the drugs caused that would appear without warning weeks after the last treatment. Quite disgusting; I would be in class with students and it would suddenly hit me, or I would be out for a run and I could actually smell the drugs coming out of my body in the sweat. I was physically sick only once after the last treatment and that was my fault; I had finished boasting to a student who was communicating with me via email that I had made it the whole three months without being sick even once and then--WHAM! Ah, the crash is great when the high and mighty fall.
After the chemo came the inevitable follow-ups in the form of blood work and CT scans every 3-4 months. So far everything is clean and I expect it will remain that way. I, like the others who have lost both testicles to cancer, have had to get used to taking testosterone replacement. Mine is in transdermal patch form and seems to do its job admirably, despite being a bit messy and a source of endless curiosity to all those who see it on my arm. It is a bit like a battle scar, something that memorializes my fight and constantly reminds me of the past. Without it, though, I would not be able to run like I am used to or enjoy the same quality of life, so as one of my ex-students and friends says, "It is all good."
Something to be aware of that came as an unpleasant shock to me during my second "round" and that those reading this might benefit from: I had the support of close friends and relatives and I couldn't have made it without them. However, others with whom I thought I was close suddenly "closed up" and drifted away or stopped interacting with me. I had not anticipated this and, in my rather needy emotional state, this was very hurtful. I still do not know what caused this distance. Fear? Possibly. I have found that people around me sometimes just do not know what to say to someone going through such a difficult time and opt to say nothing instead of risking idiocy or insult. If you are prepared for this it might soften the blow. Know that it is nothing personal and that they are probably struggling with watching you, a friend, suffer and simply do not know what to do.
Good luck, all, and I will be happy to help in any way I can.