When I first heard the words, “Larry, we found something and need to do a biopsy,” my stomach dropped. But the way my doctors explained it, it almost sounded routine. In and out, quick, nothing unusual. And I’ll be honest with you, I didn’t do much research. I was already overwhelmed just hearing the word “cancer,” and when you’re scared like that, you cling to what feels simple. A biopsy? Sure. Just another test. “Let’s do it.”
I showed up, they took the sample, and I thought I was doing everything right. What I didn’t know—and what nobody told me—is that what happens after the biopsy matters just as much as the biopsy itself.
I’ve never heard anyone talk about biopsy tissue and what it actually is and can do for you. A biopsy was just a biopsy to me. The tissue your doctor takes to confirm or deny that you have cancer. I was wrong.
They preserved my tissue using something called FFPE. (Formalin Fixed Paraffin Embedded) Never heard of it? Neither had I. Turns out, it’s a method invented over 100 years ago, where they soak your biopsy tissue in formaldehyde and then embed it in wax. Sounds kind of old-fashioned, doesn’t it? And it is. The problem is, it wrecks the DNA and RNA. That means, down the road, your tissue can’t be used for advanced genetic testing and it’s in too rough of shape to be tested in modern clinical trials.
At first, things looked okay. My doctors removed the lesions and treated the colon cancer, and I thought maybe I was one of the lucky ones. But here’s the harsh reality: a huge number of cancer patients relapse within five years, even under the best “standard of care.” And that’s exactly what happened to me. Two years later, the cancer came back. This time, it spread to my bladder.
When you hear the word “metastasis,” it’s like the bottom drops out of your life. Everything sort of stands still and you get this sinking feeling that’s just hard to explain. Still, I wasn’t ready to give up. I thought: Okay, I’ll get into a clinical trial. I’ll fight this with the latest treatments. That hope kept me going and I poured over clinical trial directories online – I used clinicaltrials.org mostly – and I found 6 different trials to ask my doctor about to see if he could get me into one of them.
When I presented him with my list, he looked at me and explained that most clinical trials don’t accept FFPE preserved tissue as they are too degraded to get accurate testing done. My oncologist explained that I didn’t qualify for any of the 6 clinical trials that I had found—trials that were testing promising bladder cancer therapies—because my tissue wasn’t usable. The FFPE preservation had basically made it worthless for genetic analysis. I can’t begin to tell you the thousand thoughts that ran through my mind that day, but the one that stood screaming at the top was,
“WHY DIDN’T ANYONE TELL ME THIS BEFORE?” !!!
Six clinical trial doors closed, just like that. Six shots at maybe slowing this cancer down, maybe even stopping it. And I sat there thinking: If my tissue had just been stored differently, would my fight look different right now?
I took on a whole new level of research using ChatGPT and other online AI models and started to learn about cryopreservation of tumor tissue and how it is far superior to FFPE. It’s not some science-fiction idea that brings the villain back to life in a Marvel movie. It’s real and it’s available for anyone. If my tissue had been cryopreserved and stored in a biobank, it would have stayed fresh and Pristine. That one sample could’ve been tested against hundreds of therapies, not just a handful. And here’s what really gets me: that same piece of tissue could’ve been used in all six clinical trials at the same time. No waiting. No wasting precious months. Just getting me the right treatment the first time, every time. Again: “WHY DIDN’T ANYONE TELL ME THIS BEFORE?” !!!
Think about that. Imagine you—or someone you love—hearing the word “cancer.” You want every possible option on the table, right? Like you and me, you want the best shot at living. And yet, because I didn’t know to ask, because I assumed “standard care” was enough, I lost those options. Nobody lied to me. My doctors were doing what they’ve always done, what works for many people. But for me, “standard care” wasn’t enough.
That’s the part that hurts the most. Not the treatments, not even the diagnosis, but rather, knowing my fight could’ve been managed better if I’d just had more information upfront. If I’d known to say, “Wait—how are you preserving my tissue? Can we cryopreserve it instead?”
I can’t go back and change my path. But maybe what I now call “My Big Fat Cancer Mistake” . Maybe someone reading this will stop for a moment, before their biopsy or the biopsy of a loved one or even friend and ask the question I wish I had asked. Don’t assume routine means best. Don’t assume “standard” means right for you. It’s time to take control of your cancer journey and get it right from the start.
Cancer is a tough enemy. Lord, I know. The odds of relapse are real, and if and when it does come back, you don’t want to be boxed in. You want your tissue preserved in a way that gives you every chance, every trial, every therapy that might help. Shoot, now I know that they could have tested my biopsy tissue against over 300 different medications to figure out which one worked the best against my particular cancer and started me on that treatment right out of the box. The right treatment, the first time, every time, has a much better ring to it than “metastasis”. I’ll tell you that for sure.
If sharing my story makes one person press pause, take a breath, and demand that their tissue be cryopreserved to give them the best shot at success, then maybe my struggle means something more. Because when cancer comes knocking, you only get one shot at doing this right the first time. And I wouldn’t wish the regret I feel on anyone.
God Bless You,
Larry
Recent Comments