First Steps, Second Opinions
Scans
During the week after diagnosis, I had my first ever CT scan. This was an abdominal scan to get an initial view of my tumor. It was relatively promising, given the surprising fact it hadn’t spread past some localized lymph nodes.
After this, I had to have two MRIs, one to get a second look at the tumor, and one to verify that a spot on my liver was just a benign cyst, which it is. Finally, I had to get a CT scan of my chest to double check that I had no spots there.
The scans were another surreal part of treatment. Having to be so still and knowing your LIFE might depend on it is crazy. The MRI machine is so small, I have no idea how anyone larger than me gets in there and doesn’t have a panic attack. Its sounds remind me of a Skrillex song, and it was all just so interesting.
After getting these results, we moved on to treatment plans.
A lil illustration to show you what the colon is and where my cancer is. There are five parts of the colon. My tumor affects the last two, starting in the top of my rectum and going up into the sigmoid. Cancer is the red stuff and YOU KNOW WHAT THE STAR IS.
Standard of Care
For the first several weeks after diagnosis, I saw what felt like dozens of different doctors. But, during this stage, each doctor agreed on what was my best course of action. Given that I have a pretty average case of a pretty common cancer, the treatment protocol, or “Standard of Care” is very well established. This is good, because it means they know the treatment works, but not the best as far as personalized care.
So at first, we were operating the assumption I’d follow Standard of Care procedures, which involves:
28 days of chemoradiation. This is what they call it when you do chemo and radiation concurrently. I’d go into the radiation clinic every Monday through Friday and get a treatment, while taking oral chemo pills called Xeloda for five and a half weeks. This is kind of “chemo lite.”
Wait a month
Have Lower Anterior Resection Surgery (LAR). I’d get a temporary ileostomy bag for around three months following surgery.
Wait a month
Begin chemo infusions every third week for six months. This regimen is called XELOX, which involves Xeloda, plus Oxaliplatin. This is more traditional, fully-fledged chemo.
Three months after the initial surgery, I’d have a reversal surgery, which would close my stoma and thus, reconnect my colon, and let me begin getting back to normal.
This regimen was expected to take about a year. Because it was the only cancer treatment plan I’d ever been intimately involved with, I thought it sounded fine and proceeded to move forward.
During this crazy time, my mom was urging me to try to get into MD Anderson, as it’s consistently rated the top cancer hospital in the country, and happens to be just 3 hours away in Houston. I was for the idea, but after my local oncologist told me they’d most likely tell me the same thing as my team here did, plus the wait time could be months, I didn’t see it as very realistic. Nevertheless, I persisted with my attempts to convince them to see me.
Call it what you will, but I got in to MD Anderson via some miracle with only a few days notice. And, I got in with the heads of the colorectal surgery and radiation oncology GI departments.
A Second Opinion
Walking into MD Anderson kind of feels like strolling into a cancer amusement park. There’s a department for everything and it’s humbling to see people who’ve traveled from all over the world seeking hope.
My doctors, the incredible Dr. George Chang (surgeon) and Dr. Bruce Minsky (radiation – he’s been called the grandfather of radiation oncology) were like celebrities in their respective settings. They both walked around with giant posses of residents, students and nurses. This was both encouraging and horrifying when I learned I’d be getting yet another delightful, waking, sigmoidoscopy with a large room full of people.
I agreed to be part of a study with the University of Texas (MD Anderson is part of UT) wherein they’d take samples of my tumor while they performed the scope. They took a bunch of biopsies and then packaged them away in this magical, steaming container.
Those are tiny little pieces of my tumor.
During the sigmoidoscopy (did I mention you’re awake for that?), they send this tiny little wire through the scope tube, and use this clampy bit to take biopsies.
After this test and a consultation with another excellent colorectal oncologist, the team decided I needed to stray from Standard of Care and receive the neoadjuvant regimen. This essentially means they do more treatment up front, in an effort to shrink the tumor before surgery. On this plan, I’d receive:
Five days of super-powered radiation called short course radiation. I had my doubts, but Dr. Minsky reassured me, this method is just as effective, but less toxic and with fewer side effects, than the traditional 28 days of radiation. Apparently, it’s been the standard in Europe for a long time, but hasn’t caught on here. Oy vey.
Four cycles of infusion chemotherapy called FOLFOX. This is essentially the same drugs as with the other plan, but nothing delivered orally. This regimen includes Oxaliplatin and the aptly named drug 5FU, plus a drug called Leucovorin, which helps the 5FU work. I’d get a port implanted in my chest to deliver the chemo.
Wait a month
The same LAR surgery as with the other plan. Temporary ileostomy, same deal.
Wait a month
Four more cycles of FOLFOX
Reversal surgery
This plan encouraged me. We’d knock out all the chemo at once, have fewer treatments, and seriously cut down on the radiation exposure. I’m so incredibly grateful I got into MD Anderson, and got a plan of care personalized to my particular situation, as I think it’s made this all a whole lot more tolerable. Many people say radiation is the worst part of their treatment, so to have cut mine by 80%+ was such a blessing.
Next up was actual treatment.
