I went in to see Dr. Sri Kottapolly, MD, Radiation Oncologist (known affectionately as a Rad. Onc., which is just fun to say...try it) for my radiation appointment last Friday. I walked in and he asked if I had my records, which of course I did because I now carry EVERYTHING in the Planner I got from the Lance Armstrong Foundation (They're free. If you or someone you know is going through this, get a planner to help organize your thoughts and records). I was glad I did because Dr. Kottapolly did not have online access to the database that contained my CT Scan and records.
We went back and reviewed the CT scan in his office. What the CT Scan does is takes pictures of you like a slice. If I were laying on a table and a ninja sliced me like a loaf of bread, the scan shows what each slice of Rob would look like, belly to back. We went through each of the slices, toe to head, until we reached the pelvis, at which point he stopped.
"Ummmm." As a cancer patient, the "stop" and the "ummmm" combine to release an experience that I am certain is not dissimilar to what happens to a Thompson's gazelle in those first moments when the cheetahs arrive, still out of sight. Something isn't quite right, the heart starts to race, and all you can think is, "Get ready. Here it comes."
"You have something on the left pelvis, right here," he said. "We call it a boney island. I know you are athletic, so I am guessing you probably banged it when you were doing something, causing an injury. The body healed up around it with bone. But, I would like you to get a bone scan, because with your condition, you want to be sure. I am almost 100% sure it is nothing, an injury like I described, but let's be sure." And, he was very reassuring.
He showed me on the CT Scan report, where a bone scan was recommended, and I thought, "Hmmmmm. I wonder what else is recommended?"
We continued looking at the slices of Rob, moving on to the lungs, at which point he stopped again. He showed me three growths on my lungs, which are classified as non-calcified nodules. Again, the CT Scan report recommended follow up, but did not say with whom, or what kind. Brilliant. Dr. Kottapolly recommended I speak with my oncologist (Dr. Conroy, appointment on Monday) about that.
The other thing mentioned in the CT Scan but not addressed by my urologist was the possible presence of a Medullary Sponge Kidney. More to discuss the next time we meet. Yippee...
Dr. Kottapolly recommended 13-14 treatments at 2500 rads, which is a little shorter, but mostly what I expected. Where he really differed from what I knew was in where the radiation will be applied. The old standard (read as: the one I had read everything about), was that they would radiate the abdomen, moving down from the sternum and hitting the lymph nodes from there to roughly just below the belly button. He would hit the area along the side where the testicle was taken out. It looks like a goalie's stick in hockey, actually, and this is how most doctors refer to it. Dr. Kottapolly said the new (last 6 or 8 years) have removed the "blade" and hit only the stick--the abdomen. This reduces the chance of radiation causing cancer in that area and the bowels, which has been a problem in the past; apparently the radiating this area presents no added benefits, when comparing return rates of cancer. Oddly, I can find nothing on this online, so I put a call in to the Lance Armstrong Foundation, who will put me in touch with a cancer counselor who can help me.
He also suggested I bring my wife next time. "They have the brains, so we like to have them here so they can think for you when you need it," he said sagely. Good idea.
As he's describing the procedure, he draws a picture of "me" lying on the table, so he can show where the radiation will be directed. "Hey, doc?" I said.
"The drawing is wrong. You gave me two testicles." We both laughed, then he looked at it and said, "One of these will be the penis. Here. I will make it bigger for you." And he did...very generously.
Still laughing, as I type this...
Why Radiation Instead of Surveillance?
I found a lot of great information about surveillance versus radiation here. I opted for radiation because I wanted to meet this thing head on, kill it, and move on. Also, with my lifestyle, the more frequent follow ups that surveillance require would be problematic. Both of these suit my plan better. I discussed this with Dr. Kottapolly and he confirmed both of these for me. Granted, he is "selling" radiation, but I was glad he said exactly what I believed.
What to expect
Treatments are expected to last about 10 minutes, or less.
The normal symptoms associated with radiation are tiredness, nausea, and diarrhea...so I've got that going for me, which is nice.
Oncology appointment on Monday with Dr. Conroy
Bone Scan on Monday, consisting of two separate tests
Call cancer counselor re: new procedure for radiation related to testicular cancer