(Note: If you notice some of these posts have more links and technical jargon than usual, it’s because I’ve become incredibly grateful to all the people (like Jim Sease, who I’ll reference below) who have shared their stories and information for people like me, and I want to pay it forward. I hope that if someone in my situation stumbles on this post during a late-night internet search, they might find the word or link they need to help them on their journey.)
Back in October, when my gastroenterologist at Kaiser told me I needed to have the rest of my colon surgically removed, in order to remove a small cancerous polyp, it sounded crazy to me. The polyp was less than two centimeters big. The problem, she said, was that it couldn’t be removed like a normal polyp because it had grown into the scar tissue from a previous troublesome polyp. The scar tissue was so rigid, it would be impossible to lift the polyp from it.
Still, the idea of removing my entire colon seemed extreme. Right? Doesn’t it sound extreme? If a polyp is only couple of centimeters, can’t you just take an inch or two of colon and call it a day? After that, I met with a Kaiser surgeon, and she explained that it wasn’t that simple, because when you cut out part of a colon, you can only reattach it at a point where there’s a good enough blood supply to keep everything working, so, at minimum she’d have to remove all the colon up to the next good blood supply.
Okay, I could see the logic. But, even as we began to schedule the surgery, I wondered, how could this be the only answer? Then, one late night on the internet, I came across a blog post by Jim Sease called Removing a Large Flat Colon Polyp by EMR without Surgery in which he gives a very generous and detailed report of having a five centimeter polyp removed by an alternative procedure called EMR. Like me, his doctors had recommended removing some of his colon, and as I was doing, he had searched for — and found — an alternative.
From reading his article, I gained enough knowledge and vocabulary to start investigating the possibility of either EMR (Endoscopic Mucosal Resection) or a related procedure called ESD (Endoscopic Mucosal Dissection). Although my doctors at Kaiser didn’t feel I was a good candidate for these, I found a doctor at UCLA who specializes in these procedures along with a newer one called EFTR (Endoscopic Full Thickness Resection) and was willing to take a second look. There were a number of science-y things to consider, that are outlined in this video:
To do the procedure at UCLA, I had to change my health insurance provider during the open enrollment period and wait for that to take effect in January. Then I had to navigate through the new system to get referred to the specialist and then wait for an available date. I was lucky with a cancellation and got a date on January 27th.
On January 26th, I stopped eating and drank my too-familiar bowel-cleaning prep solution, and early the next morning, arrived UCLA. My doctor explained the three things that might happen: 1) He could remove the lesion, and if it was shallow, then I would heal and that would be it. Or, 2) he might remove the lesion, but the pathology would show the cancer was deep, and later I would still need to get a surgery. Finally, 3) he might look and decide I wasn’t a good candidate at all, for some of the reasons outlined in the video.
I was hoping, of course, for the prize behind door number one. I was bracing myself for door number two. Because he had (I hoped) looked at the images taken by my gastroenterologist, I didn’t think he’d pick door number three…
But he did. When I woke up in the recovery room, the doctor visited to let us know that he’d looked, and didn’t think my my case would be helped by any of his techniques. It was a little too big (he measured it at three centimeters) and had concave features. All he’d done was take a few more pictures and another biopsy. In the end, he agreed with my doctors at Kaiser, that surgery was going to be the route for me.
No lie, this news was disappointing. I went home and got straight into bed — both because I’d been up much of the night doing the prep, and because, in general this is my favorite way to deal with disappointing news. After a long nap, I woke up and went for a walk outside. The weather was very nice.
Did I jump through a lot of hoops for nothing? Maybe? But, I’m someone who needs to feel like I’ve really gotten all the information before committing to something life-changing. Now that I’ve been through this, I’m feeling ready to take my next steps… which you’ll get to hear about soon!