Testicular cancer. Just the thought of it causes fear and apprehension. But thanks to the wonders of modern medicine, even patients with later stages of the condition have promising cure rates. Paul, 42 years old, holds an advanced degree in chemistry. Cofounder of a New England research company, he's been married for 15 years and has three daughters. Before he was diagnosed with testicular cancer in March of 1997, he had no major health problems. Here, Paul describes that diagnosis, his successful treatment, and how it has affected his life.
Question: How did you discover you had testicular cancer?
Paul: In late February of 1997, I became aware of a ridge on the outside edge of my right testicle that seemed new, which was noticeable as I held my penis while urinating. After waiting about a week, I made an appointment with my internist, because I was afraid that it could possibly be a tumor.
He had me give a urine sample and told me it was probably only an infection, but strongly suggested a follow-up with a urologist 'just in case.' He asked if I had a regular urologist. I didn't, so he personally scheduled an appointment for me with a urologist at a local hospital for the next day. Needless to say, his urgency in making the appointment, although he acted like everything was fine, was very unsettling.
Question: What happened when you met with the urologist?
Paul: He told me that I had no infection, and that he wanted to rule out some possibilities with an ultrasound. When I came back into his office, he immediately without any preliminaries stated that I had a malignant tumor. In retrospect, I realized that both he and the internist were 99% sure of my diagnosis immediately upon examination. One of the hallmarks of testicular cancer is a marked disparity in testicle size. The afflicted one is usually much smaller, which was the case with me. I remember being surprised when the urologist asked me if my testicles were always so different in size.
Question: What was your first reaction when the urologist gave you the news?
Paul: It was as if I, and everything around me, was suddenly moving at 1000 miles per hour. I was very concerned with possible outcomes and particularly with statistical cure rates which vary widely for the different possible tumor types. I also wanted to know if a biopsy would be done to confirm the diagnosis. The urologist said that no biopsy would be done because based on the ultrasound he was almost 100% certain that the tumor was malignant, and that a biopsy might spread the cancer. I felt an enormous, pervasive fear, as well as an incredible focusing and narrowing of perspective.
Question: What treatment did your doctors prescribe? Did they present you with just one, or a number of treatment options?
Paul: The urologist said that he did not advise waiting to do surgery owing to the possible speed of metastasis (spreading of the cancer). Testicular cancer grows fast, and some tumor types grow very fast.
He said he wanted to perform an orchiectomy surgery to remove the testicle the following Tuesday, which was four days later. I agreed to that. I spoke to a friend's brother over the weekend who is a radiation oncologist and he confirmed that immediate treatment was indicated. The urologist also wanted to schedule x-rays, blood work, and a CT scan for Monday to assess the extent, if any, of possible metastasis. I agreed to that as well.
After surgery, I had a lymphangiogram an x-ray visualization of the lymph nodes , to assess the possible spread of the tumor. This showed minor lymph node involvement, and radiation therapy was scheduled.
Question: What did you do immediately after being told you had cancer?
Paul: I went to the appointment desk at the hospital to schedule preop and diagnostic procedures for the day before the surgery. Then I called my wife. After I told her, I went back to work and made the necessary plans to handle my absence from work in the coming week. Then I went home and had dinner with my wife and two close friends.
Question: What was your wife's reaction?
Paul: She was outwardly very calm, as she normally is in emergencies. I am sure she also was very scared, for her and for me, but she didn't show it.
Question: Did you tell your children?
Paul: Yes, right away. They were worried, but I don't think unduly so. They were, I think, more worried on the day of the surgery, when my wife and I were away all day from early morning until about 8:00 PM.
Question: Other than your immediate family, did you tell anyone else?
Paul: Yes. I told all my close friends. I also told my partners right away. And I decided to be completely open with the rest of my coworkers. It's a small and 'family-like' company, and it would be painful for me if people didn't know immediately, or got fragmentary information. Besides, I knew I would miss time from work and feel somewhat debilitated, so to make up a story and keep the details straight would have been very difficult for me.
Question: Did you seek a second opinion before going forward with treatment?
Paul: Before surgery, other then speaking to my friend's brother, no. But after the lymphangiogram, I got a second opinion with a leading expert in the field before the onset of radiation therapy. I ended up switching radiation oncologists within the same hospital after my consultations. The result was that I had basically the same type of radiation treatment as originally suggested by my first oncologist, just in a slightly different area of the abdomen.
Question: Did you do any research on your own after you were diagnosed, and if so, where (library, online, medical journals)?
Paul: Yes, extensively, using all of them. I found that current medical texts were most helpful. Online information was also useful, but less detailed. The National Cancer Institute has a good database of cancer information.
Question: How did radiation affect your overall health immediately after receiving it?
Paul: Radiation debilitated me for the whole course of treatment, and for several weeks beyond. I vomited uncontrollably after each radiation treatment until I discovered—largely on my own initiative—that a then-new drug called Zofran [...] controlled the vomiting completely. I still felt constantly nauseous, had very little appetite for the entire time of treatment (four weeks), and lost about 15 pounds. It was as if I was constantly seasick.
Question: Did the treatment totally cure you of testicular cancer?
Paul: Yes, although there is a slight chance of recurrence via metastasis to abdominal or chest lymph glands—less than 1%-2% at this point.
Question: What type of follow-up treatment, if any, do you receive now? How often do you have to go in for checkups?
Paul: No follow-up treatment. Checkups at first were every three months, now every six months. I have another year to go and then the doctor says he doesn't need to see me anymore—the chance of recurrence by then is extremely slight.
Question: Did the condition initially, or since treatment, have any effect on your love life?
Paul: Only initially due to discomfort from the surgery. Orchiectomy is similar to a hernia operation, although with an orchiectomy there is more pain in the testicle region, I think. The loss of one testicle still leaves testosterone levels at 90%-95% of normal, and I have noticed no effects on my libido.
Question: Has the condition had any overall effect on your health?
Paul: Not really, except that I only regained about half of the weight I lost during radiation therapy.
Question: Can you describe your thoughts and feelings right before and right after the operation?
Paul: During the weekend before surgery I worried about the upcoming events. Monday passed in a blur of diagnostic procedures and preoperative evaluations. Tuesday's surgery, although delayed five hours, went off without a hitch. I had a variety of thoughts. I felt very fortunate that the medical system, at least to that point, had worked for me as it should.
I was grateful to the internist who suspected the worst but did not want to needlessly frighten me, and to the urologist who had time enough for answers to all of my questions. My internist even called on Monday to apologize for not being more explicit about his initial concerns. Not to worry, I said, the message had come through clearly. And I also wondered what would have happened if the doctor or I had been less suspicious, or if my insurance coverage didn't pay for the confirmatory follow-up tests that I underwent the very next day. I might be getting the bad news only now (21 months later), or I might be still undiagnosed and unaware.
Question: Since the operation, has the condition had any overall effect on your outlook on life?
Paul: Yes, a significant one. I have always considered myself to be a planner and one who can defer pleasure until the 'right' time. I have not become a hedonist by anyone's measure, but I feel a definite shift in myself. I am much more likely not to put off a vacation, major purchase, etc. for the 'right' time.
During my treatment, I was focused on my recovery and felt selfish to an extent not seen either before or since. I feel I have more empathy with the troubles of those close to me since my diagnosis. I try to, and sometimes succeed at, simply sitting back and 'smelling the flowers'. I now know from a vivid personal experience that anyone, self, spouse, child, or close friend can be hit with devastating health news at any time. I don't live my life in fear of such news, but I try to live in and appreciate the moment as much as I can, because of that reality.
Question: What else about testicular cancer and your having had this condition would you share with or tell to others?
Paul: Unless you are a cancer survivor yourself, this may sound trite, but at this point I truly can look at the positive from having had cancer. It is not that my life was seriously out of kilter, but it has nudged me in a very good direction.
How To Do Testicular Self-Examination (TSE)
Men can improve their chance of finding a tumor by performing a simple procedure called testicular self-examination (TSE) once a month.
TSE should be performed after a warm bath or shower. The heat relaxes the scrotum, making it easier to find anything unusual.
The procedure itself is simple and takes only a few minutes:
- Stand in front of the mirror. Look for any swelling on the skin of the scrotum.
- Examine each testicle with both hands. The index and middle fingers should be placed under the testicle while the thumbs are placed on the top. Gently roll the testicle between the thumbs and fingers. It's normal for one testicle to be larger than the other.
- Find the epididymis (the soft, tube-like structure at the back of the testicle that collects and carries the sperm). Do not mistake the epididymis for an abnormal lump.
- If you find a lump, contact your doctor right away. Most lumps are found on the sides of the testicle, but some appear on the front. Remember that testicular cancer is highly curable, especially when treated promptly.
Testicular self-examination performed regularly is an important health habit, but it cannot substitute for a physician's examination. Your doctor should check your testicles when you have a physical exam. You also can ask your doctor to teach you how to do TSE.
Reprinted from the National Cancer Institute