My story is not typical as I do not have testicular cancer; however, for ten long weeks, I certainly thought I did, so I have lived with the fear and the sleepless nights. I offer my experience because I was able to have a biopsy procedure which is not mentioned in the literature and was less radical than an orchiectomy.
I am 50 years old and therefore not in the high risk category for testicular cancer. When I found my painless lump, I went to my family doc who felt it and arranged for an ultrasound and referral to a urologist. The ultrasound revealed a lump, but it was not the "classic" shape and was not very large. Both the radiologist and the urologist thought the chances of malignancy were low, but were definitely a risk. The urologist said that only I could decide what amount of risk I was comfortable with. (This vagueness wasn't wonderful...)
I decided to wait one month for a second ultrasound. My second ultrasound revealed no changes. This was good news/bad news. If cancer, they would expect growth. However, if inflammation or hydrocele, they would have expected it to shrink. It did neither, but felt somewhat more "defined" to both his touch and mine. At this time he said he "mildly" favored a biopsy. At no time did he really recommend a course of action. It was up to me.
Incidentally, during this month of waiting, I began experiencing pain and developed epididymitis on both sides, but most severe on the affected side. This lasted about a month and was treated with an antibiotic.
I went for a second opinion to another urologist in a nearby town whom I have known for 20 years. Upon thorough exam and reading both ultrasound reports, he said I should have the biopsy done. He said he did not expect it to be cancer, but that it would be foolish to wait any longer. (My HMO will probably not pay for this second opinion, but it was invaluable. Cost is under $100.)
Now, this is where the story gets interesting. Both of these experienced urologists recommended a procedure which was not in any of the available literature. Instead of removing the testicle, they both proposed making the usual groin incision, tying off he spermatic cord, and then "delivering" the testicle through the incision without removing it. They would then perform a biopsy and get an immediate reading in the operating room. If it was malignant or at all questionable, the testicle would be removed. If benign, the testicle would be put back into the scrotum. This sounded good to me! [Editors note: Actually, this is not unusual at all, and most urologists work this way.]
I had the procedure under full anesthesia and was walking out the door of the outpatient surgical center in less than four hours. I still had two balls. I would be mighty sore for awhile, probably much longer than a full orchiectomy. Think about the wear and tear on that poor testicle! But, I was one happy and sore guy. So, why isn't there any information on this procedure out there? At my follow-up exam, I asked my urologist.
He says that he does not do the operating room biopsy very often because he almost always knows beforehand when he will find malignancy. Testicular tumors are almost always malignant and they usually present in a "classic" form which all urologists can readily identify, especially when backed up by ultrasound, CT, etc. Therefore, the operating room biopsy would be a waste of time in 99% of his surgeries.
He says that the reason the literature does not mention the procedure which he performed on me is really just a conservatism based on theoretical legal liability. There is a "one in a thousand" chance that this kind of biopsy could spread cancer to other areas. Although this would not be a very big deal with this kind of treatable cancer, the chance does exist. [Editor's note: Actually, the BIG problem is that they might decide that it is not cancer and then put back a cancerous testicle, delaying and increasing the difficulty of treatment.]
Unfortunately, this small chance means that the procedure is not widely discussed. He says that most experienced urologists will have performed it, but not many times. (In his 30 years as a surgeon, he thinks he's done it "maybe ten times".) {Editor's Note: Of course, the real reason that this is done infrequently is that most urologists do not see testicular cancer very often.]
I offer this information to any man who has a somewhat vague diagnosis. If you are out of the at-risk age group or your lump is atypical, the possibility of this type of biopsy should at least be discussed. A second opinion is imperative. If you would like more detail on the procedure or any other aspect of my experience, please email me. Thank you and good luck! I know the anxiety and difficulty of living with cancer, even though I haven't had it!