October 2001
My TC experience is unique, and hopefully provides an important lesson about always obtaining a second opinion.
It all started when I sensed a slight tugging on my right side that led me to examine myself. I noticed a bump, but it took me a couple of weeks to really focus on it and realize that it was a distinct nodule and probably needed to be looked at. I had seen Tom Greene's "Cancer Show", and probably wouldn't have even considered TC if it wasn't for him.
I made an appointment with my doctor, and in the meantime discovered the TCRC. By doing a lot of reading I was convinced that I had TC before I even saw my doctor. He confirmed that it was suspicious and that I needed to get an ultrasound immediately, which I did two days later. The ultrasound proved that the lump was a tumor, so I was off to the Urologist. I came prepared and took him by surprise by asking for the first available surgical slot for an Orchiectomy. He got me in the next day, and my right testicle was out within a week of my first doctor's appointment.
I felt a lot of relief once the surgery was over. Not that the surgery worried me, I was just happy to have the tumor out. I knew there was a chance it may have already spread, but it was still very reassuring to have the known tumor out of me and in a beaker somewhere.
After surgery came the CT-scans and waiting for the pathology report. All the news kept coming back positive. The pathology report stated Seminoma, and the CT-scans showed no evidence of spread. I was happy that it seemed that the worst treatment I could expect was radiation.
I went to see the radiation oncologist and he was exactly the kind of doctor I like. He gave me all the facts, and fully explained my options. He explained the radiation, and then encouraged me to consider surveillance before agreeing to the radiation. He admitted his experience in the area of seminomas was limited, so he encouraged a second opinion before I decided. I chose to go to Memorial Sloan Kettering Cancer Center, and set up an appointment for the following week. My pathology slides were sent ahead and I gathered up and carried all my scans.
I went to MSKCC with the idea of accepting whatever their opinion was regarding surveillance vs. radiation for a Stage I Seminoma. I felt either way, I had avoided the worst possibilities of TC. My wife asked me if I was nervous right before we were called in, and I said only about one thing. I was worried that they would tell me that they didn't agree with the previous pathology report. I was very comfortable knowing I had a Seminoma, and I didn't want that to change.
Once we began the consultation, nearly the first words out of my Doctor's mouth were that there was some doubt about the pathology of my tumor. He said he felt sure it was a Seminoma, but there were some troubling aspects about it that kept him from declaring 100% that this is what it was. We then went on to discuss my options as if it was a seminoma, but I was understandably nervous about what he had just told me.
He recommended, and it is MSKCC's protocol, that I receive abdominal radiation in favor of surveillance. (By the way, the local oncologist would have radiated the abdomen and pelvis) I quickly agreed and we left with the understanding that he would phone us the next day when their top pathologist was back and had a chance to look at my slides.
The next day I received a phone call from my Doctor with the news on my tumor. It was different and unusual, but not in the way that concerned me. It turns out that the tumor was a Spermatocytic Seminoma, something that is extremely rare in men under 50 (I'm 34). The treatment? Nothing! There is only one known case of Spermatocytic Seminoma ever metastasizing. I will still follow a surveillance protocol, but I should be in the clear.
I had read much on the TCRC about getting second opinions, and even stories about incorrect pathology reports. Even so, with the positive news of having "just" a Stage I Seminoma, it was tempting to skip the second opinion. I hope this helps convince others to not make the mistake I almost made.