About 2 weeks ago I had a combination PET/CT scan. I was injected with radioactive glucose, then scanned to look for the radioactive decay of said glucose. That's essentially what the PET scan portion does. The CT portion just gets images of bodily structure to overlay with the images of detected radioactive decay.
Why does the PET scan detect malignant tumors? Because cancer usually likes to grow quickly; much more quickly than the rest of the body. And that amount of growth needs a lot of food: glucose. The PET scan just shows what areas of the body are using the most glucose. If the suspicious area lights up on the PET scan, it's a tumor.
The above image represents fused data from both portions of the scan: the red/orange/yellow colors represent glucose uptake from the PET scanner, while white represents physical structure from the CT. This slice down the center of my body looks pretty normal: the brain and heart are the big users of glucose, while some is collecting in the bladder for expulsion.
I was expecting this scan to be a mere formality: the tumor would light up, confirming its nefarious nature, and we would proceed with the treatment recommended by the doctors - radiation therapy. What I got in my followup visit a few days later was anything but that.
Mass confusion
First, the report said there was nothing suspicious found in the PET scan. Good news, right? But of course, nothing is 100% sure. It could have been hiding. Or the radiologist who read the scan may have been getting ready for vacation and been distracted from his work. You never know, right?
The second part really threw me for a loop. The medical oncologist I saw for this followup said that he recommended against radiation therapy. If the tumor were confirmed (based on the report, nothing was confirmed yet), he wanted me to do chemotherapy.
What??!?
I thought all the doctors were on the same page with radiation. That's what the established guidelines say is standard at my stage of disease. It's highly effective for the tumor type I have. I'd even done my planning scan for that the day after the PET scan (and got some cool tattoos; I'm a real bad boy now!). I was happy that we were moving forward... or so it seemed, until this.
The oncologist's reasoning did make sense. He reminded me that radiation is only applied to a specific area of the body. If any cancer cells had broken off the tumor and spread outside the radiation field, they wouldn't be killed. They would eventually grow new tumors and I'd need chemotherapy anyway. Double the side effects, including long term risks. So why not just go after it with the whole body treatment first (chemo is injected into the bloodstream) and knock it out for sure?
Let me tell you that since this thing popped up last month, I've been hoping and praying that radiation would be the recommended treatment. Radiation is difficult to go through, but nothing compared to the way that chemotherapy ravages your body. With radiation, I'd be able to continue working pretty much every day; with chemo, I'd be lucky to to average a day or two a week, if that. Chemo was not the answer I wanted to hear from the docs (though obviously I'll do it if I have to).
Vacation was on the brain
I got a call the next day from the radiation doc. He had looked at the images from my PET scan and completely disagreed with the report. He said he saw tumor show up on both places. It was there. The radiologist who'd written the report, it turns out, was now on vacation. Yeah, I guess he was just flying through his last set of scans to report on. I hope any other patients in that batch had someone else look at their images too!
This actually made me feel better. I had looked at my images the night before, and thought I might have seen something faint in the general area of concern. I'm not an expert, so I figured I was just being paranoid. Guess not! Here's where I think it is (but I could be wrong):
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Click on either of the above to see an animation of all PET/CT slices through that axis.
To make a long story somewhat shorter, over the past week I've had the insanely difficult task of deciding whether to continue towards radiation, or stop all that and do chemotherapy instead. This was 100 times harder than my decision to go with surveillance earlier this year. Now I actually have to pick a poison. Both treatments have different drawbacks and long term risks. Neither is ideal. Mega stress.
Adding to that is the fact that my urologist and my primary doctor both decided to recommend chemotherapy, so it was 3 doctors against 1 in favor of chemo. Not what I wanted to hear! I respect and trust all four doctors immensely, and making either choice would be going against some doctor's recommendation.
The reversal
Late last week I began trying to wrap my brain around the idea of losing my hair and putting my body through a much more grueling and punishing form of treatment. If radiation therapy is a one-day IronMan Triathlon, chemotherapy is the three-week Tour de France. But then came a reprieve. My doctors had brought my case to a tumor board, a panel of other doctors not involved in the case, to make a recommendation. The board recommended radiation. Then, at the eleventh hour, my urologist changed his mind. He decided that radiation was preferable after all.
Hallelujah! The roller coaster is officially stopped. I can get off now. I can go with my gut instinct and not feel like I'm making a big mistake by ignoring the advice of three good doctors.
So tomorrow I am scheduled to begin radiation therapy which will last for 4½ weeks. It'll be rough, with some nausea and lots of fatigue, but I'll get through it. With any luck, I won't ruin my nearly 12-year streak of not vomiting. And I hope the super power I get is pretty cool.
