Note: What follows is my experience with the Cologuard screening test. Always discuss early prevention screenings with your doctor, and in spite of what I’m about to tell you, please get screened. It’s important. This blog post is in no way meant to dissuade you from screening, but rather to make sure you know what may happen and to prepare you. Cologuard has made it clear they have no responsiblity to patients.
The physician filling in for my regular doctor when I went in for a refill of my omprezole (You see it over the counter as Prilosec) took a look at my chart, mentioned I was just past the age of 45 when they start screening for colon cancer and would I like her to order a Cologuard test. I’d seen the commercials. Mom was a nurse, so I knew all about these things, and I believe in doing all the screenings. So I shrugged and said “sure”. After all, I expected no problems. Cancer wasn’t one of the medical conditions that ran in my family. There was no reason for it to come back positive.
I took the test, received my “Explanation of Benefits” which indicated that my insurance company covered the $600 cost, and waited for my results. The doctor’s nurse called. The test had come back positive. I needed to have a colonoscopy right away. No explanation, nothing except “positive” and “right away”. You can guess what I imagined. Due to my work situation, I said let me figure out how I can handle the time off for prep. I called back a week later, decided this was too important to try and wrangle time off from an uncooperative employer. I could do it. Schedule it.
Still no explanation as to what a “positive” test meant. Nothing from Cologuard either. This is important. You’d think for $600 they could at least send a letter or an email pointing the patient toward the video on their website that indicates what a positive test means. (I stumbled across it nearly a month later when I realized the physician had failed me, and I was on my own to find answers.) You’d think they would follow up with the doctor to ensure the colonoscopy got scheduled. Mine, it turned out, had not. Five weeks, multiple phone calls (My regular physician’s office refused to handle it because I’d seen a substitute doctor and I had to go through her office.), and it was finally scheduled. I was never told by my doctor what that positive test meant, and was left to believe that I had cancer for five weeks while they neglected to put something into the computer. You can imagine how scary that was.
Let me pause here. I had been having really bad stomach pain for about four years, which was why I was on the omprezple. No one ever mentioned checking into it. They waved their hands and said it was GERD. I’ve long sinced learned as a fibromyalgia patient never to mention the “p” word (pain), because it immediately gets dismissed. Hell, my physician dismissed what could possibly have been an early case of COVID as my “fibromyalgia gone wild”. So, in the following years, my pain getting worse, no one had said anything about checking out this stomach pain in any way. I simply lived with it.
Oh, and Colorguard never did reach out to me. They took their $600 and ran, which leads me to believe that Cologuard is simply a profit taking activity because they clearly have no interest in helping patients with possible cancer. (I still say get the screening, but be prepared.)
I saw the doctor doing the procedure. It was only then when he said “that test has a high positive rate. They want to get you in here to have a colonoscopy.” which was reassuring. He felt my abdomen and said while they have me under for the colonoscopy, they would do an endoscopy to take a look at my esophegus and stomach just to be thorough. I appreciated this. Dad died of esophogeal cancer, and I’ve always had a “nervous stomach”. Again, I believed in having things checked out.
My procedure was scheduled and completed with flying colors, and everyone at the surgery center including the physician there were wonderful. The result? I did have a couple of polyps, which is probably what triggered the test and come back in five years. It was the other procedure, the endoscopy that came back with findings. Gastritis of both the stomach and duodendum probably caused by h pylori bacteria. (And while h pylori isn’t caused by stress, I suspect the severe stress I’ve been under since 2017 lowered my immune system to let it take over.) Two weeks of what they call triple protocol (very strong antibiotics and a stronger PPI to soothe the stomach) and I should be good as new. Probably better.
I’ve also seen the bill for the procedure, and about fainted–my insurance had done its job. I owed a little, but nothing like I feared. All’s well that ends well, and I’m thankful, really. I am. I’m finally getting the medical treatment I needed.
I think this is an important story to tell for two reasons. One, I believe fatphobia and the local medical system’s near refusal to do anything for fibromyalgia patients left me in horrible pain for four years from the gastritis, which could have had serious complications. Two, there is no reason why Cologuard should leave patients fearing they have cancer when they receive $600. Would a postage stamp and a letter cost them so much? Even direct people to this page on their website. But they did not, and I feel they deserve as much blame as my doctor for leaving me in sheer terror for five weeks fearing I had cancer. (I’m the sole provider for my family and homestead. Without me being able to eek out a living, a lot of critters and my spouse would suffer.) Also, they provided the positive result, they have a responsiblity to ensure the follow up procedure was scheduled. As it was, I had been trying to schedule it, but the physician’s office failure meant it took five plus weeks to get that initial assessment. And I was nearing the end of the 90 day period when the best results happen when I did get that assessment.
Part of what’s wrong with American healthcare is the profit taking. The jacking up of costs to enrich companies. As far as I’m concerned, the Exact Sciences Corporation and Cologuard are doing just that, all in the name of “prevention”. If they can afford to run endless television commercials, they can afford to let patients know about their results and help ensure follow-up procedures get scheduled.