May 20, 2001

JK's TC Story

During the 3rd week of March 2001, I was attending a conference in Las Vegas. The day of my departure back home I noticed when I awoke that my right testicle was much larger than my left one. The size of the right testicle was about that of a golf ball. I immediately called the emergency rooms at a few hospitals in Nevada to see what this might be. The nurses I spoke to said that I needed to be seen right away; so I decided on the flight home that I would head to the doctor's office as soon as I landed.

The next day, Saturday, my wife and I went to the urgent care facility where the doctor told me that he thought it might be an infection known as orchitis. Since I had had a related infection, epididymitis, in the past a couple times, I thought (and hoped) he was right, but I took his recommendation to see my primary care physician.

In my meeting with my primary care physician on that Tuesday, I was told by the doctor that he wanted me to see a urologist right away. He was concerned that because the testicle was enlarged, hard, and painless that it might be something more than just orchitis. He scheduled an appointment with a urologist the following day (Wednesday).

Still not thinking it was anything all that serious I casually went to the urologist's office and met with the specialist. He seemed like a nice enough and smart enough guy, and almost immediately after his physical examination of the testicle he told me that he suspected that I had a tumor in my right testicle.

Tumor!, I thought -- no way could this be possible. I questioned the doctor over and over, but he seemed quite certain that what I had was more than a simple infection. The urologist ordered a series of blood tests (the AFP, LDH, and Beta HCG) that day and an ultrasound examination for that Friday. He told me that I should remain relaxed and still hope for the best -- I was off.

That next day, Thursday, I received a call from the urologist who said that he needed to talk to me. He stated that while the LDH test came back normal, my beta HCG was slightly elevated and that my AFP level was at 880, a level that was much too high for someone with two normal testicles. He went on to say that the blood tests confirmed what he had suspected -- that indeed I had a testicular tumor and that it needed to be removed right away.

I was in shock. I started to babble, question, and cry right on the phone. How could this be, I kept stammering. In my mind I was thinking that this just isn't possible. I am only 30 and I still have so much to do. I had just gotten married six months earlier. I had accepted a new job beginning in the fall, and life, for the first time in a long while, finally was just right. Furthermore, I found myself repeatedly asking the doctor on the phone, "am I going to die."

The doctor was quite calm and reassuring. First, he said, "testicular cancer is curable." Because doctors know the exact route testicular cancer can take if untreated -- first in the testicle, then to the lymph nodes in the pelvis, then to the stomach, then to lungs, and finally to the brain -- they are able to track and treat the disease very specifically. In addition, chemotherapy fully works for this disease.

The doctor also mentioned to me about the Lance Armstrong story, and he said that I can and will beat this. He just needed, though, to get the right testicle out of me as soon as possible because the disease, if not treated right away, could spread upward very fast. On Friday (the next day) I had the ultrasound, which essentially confirmed what the blood tests had shown -- a tumor in my right testicle.

My surgery to remove the testicle was then scheduled for a week later. In the meantime I wanted to get a second set of blood tests, but the results came back virtually the same. I also decided to seek a second opinion. The second urologist whom I met with was touted as one of the country's best and my wife was particularly keen that I meet with him. So just a few days before my orchiectomy, I met with the second urologist who was simply the most impressive doctor I have ever seen. He explained to me that I did need to have the testicle removed and like my first urologist, he also said that testicular cancer is curable and that I needed to be strong and have courage.

After meeting with this second urologist, both my wife and I decided that we wanted him to do the operation. Fortunately the second urologist was able to fit me in and two days later I had my right testicle removed.

To be honest all of this happened just so fast. All within ten days I was diagnosed with testicular cancer, and I had the operation that left me with one left testicle. I was able to leave the hospital that same day and within three to four days I was feeling almost back to normal.

The urologist received the pathology report on my removed testicle a few days after the operation. It was a non-seminoma tumor (35% yolk sak, 35% seminoma, 25% immature teratoma, and 5% embryonal). After the operation I had a cat scan done which, thankfully, came up clear. The urologist then scheduled an appointment with an oncologist, who also was considered top notch in the area.

In the meeting with the oncologist I was told that because I was a "stage I" patient who had no "frank" spread of the disease to my lymph nodes, stomach, lungs, etc., I essentially had three choices -- all which would work. First, I could have a surgery known as a retroperitoneal lymph node dissection (RPLND). This was a major surgery which would require the urologist to make a 1-1 1/2 foot incision in my chest so that lymph nodes around my kidneys could be removed and microscopically examined to see if the cancer had spread. Because the cat scan cannot pick up such microscopic cells, this surgery is useful to definitively track a patient's condition. Another benefit was that if the cancer had spread to the lymph nodes, the surgeon would be in the position of plucking out those nodes that were cancerous. Of course the down side was that there could be a lot of pain after the operation and it would be 4-6 weeks before I recovered from the surgery.

The second option would be to move directly to chemotherapy. The oncologist said that because testicular cancer is very receptive to chemo that this option also would be successful after about two cycles (approximately 6 weeks). However, while there would be no invasive surgery needed, the major downside was that one might be subjecting one's body unnecessarily to chemicals that were not ever needed (particularly since it appeared as though the cancer had not spread). As a result of chemotherapy, I would be extremely fatigued, nauseous, and most probably sterile, temporarily, if not permanently. This precautionary method seemed too drastic for me and I decided that if it was between chemo and the surgery, I would go for the latter.

The third option was to wait and monitor. Because about 70% of the patients in my situation are cured by the orchiectomy alone, the odds were in my favor that I had already been cured. However, the fact that there was almost a 33% chance that the disease had spread left me very nervous about opting for this choice. Moreover, having to vigilantly monitor for the next 2-3 years, knowing that if it reoccurred my only option would be to go straight to chemo, seemed mentally nerve-wracking and extremely stressful. Furthermore, I wanted to try to avoid chemo at all costs, and I am grateful that my oncologist was also very sympathetic to this position.

I therefore opted for the RPLND surgery. Without question I was really really nervous. What if something went wrong in the surgery? What if I would not be able to ejaculate properly ever again, which was a potential side effect of the surgery. What if the disease had spread and I also needed chemo on top of the surgery-- wouldn't the surgery then have been a wasted procedure? What about the pain afterwards? What if the RPLND was successful, but then the cancer at a later date recurred in my stomach, chest, or lungs anyway -- (there is about a 10% chance of this occurring).

Nevertheless even with all these concerns, I thought I needed to be aggressive in dealing with this disease. If the surgery showed that there was no spread, then even though I would still have to go through a strict monitoring regiment for the next year, this would be the best outcome possible.

Mentally, however, I was a mess. Without the support of my loving wife, my renewed faith, my friends, family, and others, there is no way in the world I would have made it. As it turned out the surgery was a success. (I should note though that I spent four days in the hospital and the day after I returned home, I had a severe allergic reaction to a drug, Compazine, that was given to me to combat the nausea I was feeling.

If anyone does opt for the surgery route, please be aware that I was told by the emergency room doctors who saw me, that Compazine can and does cause a terrible dystonic reaction in a number of patients.

Recently, I just had the first set of post-op blood tests that showed that my blood levels are back to normal. I know that for the next couple years I have to be very diligent in monitoring (through x-rays and blood tests) that the cancer not return, and even though there is a 10% chance that it might and a 2% chance that it could occur in the other testicle, I do not regret going through the surgery whatsoever.

This whole experience has really changed my life. I feel this overwhelming sense of gratitude to God and to my loved ones. Moreover, I really feel as though I have now a second chance to appreciate all that I for so long took for granted. I know that emotionally I am still struggling with the whole notion that I am not as invincible as I once thought I was. In fact every ache I have often frightens me, almost to the point where I have seriously begun to consider that I may really have an extreme case of health anxiety. I find myself constantly worrying about developing cancer in my other testicle or getting it somewhere else, where it might not be as treatable. But with the strong support network that I have, I pray that all will eventually be okay. I know that this whole episode has made me a more religious, compassionate, loving, forgiving, and conscientious person. For that I am, believe or not, grateful that I have had to deal with testicular cancer.

JK.


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