July 4, 2001
Updated February 8, 2008
I have written this story not just to document my experiences as I get treated for this disease, but also to provide information for those unfamiliar with testicular cancer or who have been diagnosed with the same malignancy and who happen to stumble upon this family web site. I highly recommend the Testicular Cancer Resource Center web site for comprehensive information regarding this disease. Men are notorious for not going to the doctor and ignoring health problems. Testicular cancer is very treatable (even in the advanced stages) but early detection is the key to increasing the number of treatment options.
As a child, I had an undescended testicle and knew that I was at increased risk for testicular cancer. My right testicle was significantly smaller than the left. As I got older, I did the usual self-exams, not on a very regular basis but enough to know if something was changing.
While I was showering on a late February morning in 2001 I did a self-exam and I realized that my right testicle was enlarged. This gave me some cause for concern and after I got to work I called my doctor's office and made an appointment with my family doctor. He was able to see me late that same day. He examined me but did not feel anything unusual. A lump on the testicle tends to touted be a classic symptom of testicular cancer, but there are other presentations including enlargement of a testicle. My doctor told me that he had felt testicular cancer before as a lump on a patient's testicle and thought there was nothing to worry about. However, as a precaution he sent me for an ultrasound, which I had on the following Monday. After the ultrasound I went to the grocery store to pick up some items, fairly confident that I was just fine. When I got home my wife greeted me with the news that a mass had been detected in my right testicle and that cancer was suspected. My doctor had made an appointment for me with a urologist for the very next day.
Armed with my ultrasound films, which I picked up from the radiology department of my local hospital, I arrived at the urologist's office. After some delay due to the fact he was performing emergency surgery he examined me and checked the ultrasound pictures. My right testicle was firmer than the left and the ultrasound pictures clearly showed a mass about 2.5 cm long within the testicle. He said it could be cancer although it could also be benign and that the testicle should be removed. I had already done some research on the subject and knew that the majority (approx. 95%) of masses found in the testicle were malignant. The urologist sent me to get blood drawn for tumor markers.
On the following Tuesday February 27th, I arrived at the local hospital for outpatient surgery (radical inguinal orchiectomy). A few days previously I had undergone a preadmission physical and chest x-ray. The chest looked clean and the blood test showed that I had no elevated tumor markers. This sounded good to me. More research on the web had led me to the Testicular Cancer Resource Center (TCRC) web site, where I had learned about the two main types of testicular cancer - seminoma and non-seminoma - along with their related treatments. It sounded like I might have seminoma, but only the pathology report later would tell.
Surgery went smoothly and I awoke with some pain. I was given some medication and slept for about 2 hours after surgery. Try as I might I could not go to the bathroom and was eventually released later in the afternoon. My wife drove me home. It is amazing how bumpy a road feels with stitches holding your abdomen together! That night I went to the bathroom about every 1-2 hours, like I had an enlarged prostate!!!!!
Moving around after surgery was somewhat painful and I tried to minimize any movement for the first few days. The pathology came back a couple of days later as a pure seminoma although the slides were automatically sent away for a second opinion. I had read more about the treatments for non-seminoma, which included some pretty major surgery (RetroPeritoneal Lymph Node Dissection or RPLND) so I was "relived" about the pathology report!
After a week I went for a follow-up with the urologist who scheduled me for a CT scan. He said I was healing very well and mentioned that I would likely receive radiation. My family doctor referred me to a local medical oncologist. I met with him the following week after the CT scan of my pelvis and abdomen. He wanted a CT scan of the chest in case the cancer had skipped the abdomen, so off I went again. Both CT scans came back clear. There was a scare with something showing up in my liver. However, a three-phase study and an ultrasound showed that this was an artifact due to air in the stomach/intestines.
So it appeared that I had stage I seminoma i.e., no apparent spread of cancer from the testicle. My oncologist gave me some options — wait (surveillance) to see if anything else shows up and then treat it, or radiation therapy to sterilize the retroperitioneal lymph nodes. The latter would be done just in case there was subclinical cancer in that area, i.e., cells had escaped but had not yet grown into a detectable mass. My oncologist had only treated 3 testicular cancer patients (it is a relatively rare cancer, only striking about 7500 men each year) so I decided to seek more advice. I had joined the TC-Net mailing list and had heard from several people regarding treatment options. After a second opinion with an oncologist at the Cleveland Clinic I chose radiation therapy, despite an initial heavy leaning toward surveillance. Hindsight being 20/20, I think if I had lived in an area where the TC experts practiced (e.g. Indiana University), I would have opted for the surveillance. But the 15-20% chance of a reoccurrence bothered me and my oncologists were more familiar with radiation therapy as the "standard" treatment for my staging.
About 5 weeks after surgery I met with a radiation oncologist. The tumor board had also discussed my case and had also recommended radiation. I went in to see the doctor with my mind made up. As he had a cancellation that day I immediately had a simulation session where they x-rayed me and marked me up for a "hockey stick" shaped radiation treatment area. I would get 3000 Rads over 15 days with weekends off.
Treatment started the following Tuesday. I had filled a prescription for Compazine (for nausea) and was advised by my radiation oncologist not to use this the first time (presumably to see how I reacted), but to take a pill about 1 hour before the 2nd treatment and another 2-3 hours later as needed. Well I vomited about 3 hours after the first treatment and again about an hour later, so I took some Compazine and went to bed. The next day was worse despite the Compazine — I vomited an hour after treatment and then again 15 minutes later. This went on for an hour, then the frequency went to vomiting every 20 minutes or so for the next hour then vomiting about every hour. I phoned my radiation oncologist who called in a prescription for Zofran, another anti-nausea medication. My wife picked this up and I took a pill and went to bed.
The Zofran seemed to do the trick although I did not eat at all following treatments. I did not eat well during the day, more from fear of the unknown than from problems with nausea. As a result I lost about 7 pounds in a week. It should be noted that I am fairly skinny to begin with so the doctor advised me to eat more — I followed his advice. I joked with people that I was the only person under doctors' orders to eat candy bars! I also drank Ensure and Carnation Instant Breakfast to increase my caloric intake. Toward the end of the treatments I began to experience diarrhea. Each day I took L-Glutamine, an amino acid that is used extensively in muscles and the intestine. There is some research that suggests it helps patients undergoing radiation therapy in that it helps speed recovery from intestinal damage. A 30-gram/day dose is recommended, but I was only able to take 15-20 grams. I used a powder form and stirred it into apple juice and yogurt -my intake was limited as I did not like the gritty feel!
Radiation treatments finished on April 30th. The next day I was very nauseated and vomited later that evening. However, the following days were much better. I experienced abdominal pain during the night and would get up and drink milk, this helped tremendously. The pain went away after a couple of weeks. My radiation oncologist told me later that medications such as Zantac would have helped eliminate this pain as it was probably excess acid in the stomach.
I had a chest x-ray and blood work in August 2001, to check for reoccurrence in the chest area or other signs that cancer was present. The next day I got a call from my oncologist. A spot had been detected on my chest x-ray. He needed to see my previous film along with my CT scans. I left work in a hurry, drove to my local hospital and picked up the x-rays and CT scans. He looked at them that day and called me to say that he thought it was scar tissue, but to be sure we should get another CT scan of the chest. I got an appointment for two days later. My blood work turned out fine. The CT scan came out clear — I even got the results the same day, boy was I relieved.
I have continued with follow-up exams for 6 years now. Initially, every 6 months I got a chest x-ray and blood work (tumor markers) and then in addition to that, a CT of the abdomen and pelvis once a year. In March 2005 my oncologist moved me to a yearly schedule and in March 2006 we dropped the tumor markers and annual CT but continued with yearly chest x-rays. He also runs a PSA test and says that the incidence of prostate cancer is slightly higher in TC patients. For some reason my white cell count has run a little low each time it was tested. My oncologist thought that this may be due to some damage to the bones in the area that was irradiated. Apart from that so far so good, let's hope it stays that way!