I’d had pain for about two months, and it kept getting worse. I was technically still “too young” to need one, but I made the appointment for a colonoscopy anyway. Cancer wasn’t even a thought in my mind — I was healthy by every standard I knew to check. I ate well, strength-trained four days a week, and by most people’s guess I looked five to ten years younger than I actually was.
I went in a little nervous. It had been close to a decade since I’d set foot in a hospital or seen a doctor for anything. But I told myself: at least they’ll find something and we can fix it. Best case, “you strained something, give it time, here’s what helps.” Worst case I let myself imagine: “a hemorrhoid or a fissure — quick procedure, we’ll get you scheduled and fixed right up.”
I woke up groggy and disoriented. The room was silent — a few nurses standing there, not saying a word, waiting for the doctor, waiting for my wife to make it back to my side. Then he said it, flat, no windup: “You have colorectal cancer. There is a mass approximately 7.5 cm in size.”
I can’t really put into words how that feels to hear, especially completely blindsided. The words take a full minute just to register. It’s every emotion at once — disbelief, dissociation, dizziness, panic, despair, anger, all wrapped together. If you’re reading this, you probably already know exactly what that combination feels like. And it doesn’t hit just once — it keeps cycling and fluctuating for weeks, sometimes months, after.
Within a week I was sitting across from an oncologist hearing “stage 4.” Lymph nodes and both sides of the liver. And his prescription was essentially: chemo to manage it, not cure it. Maybe three years. Maybe five if I was lucky.
I’m still here. The target areas shrank 41% with no signs of active disease. And I’m writing this because nobody handed me a roadmap when I needed one most.
This is that roadmap — my roadmap, not a medical protocol. Every real decision in it was made with my own doctors, and yours should be too.
Here’s what I want to offer you — the thing not a single person told me, that I only figured out on my own, months to years later: that diagnosis, and everything that floods in right after it, is just your base emotions trying to protect you. Your mind will ruminate on every dark story you’ve ever heard about cancer. You’ll land on cancer = death, because that’s the only equation most of us are handed. That’s all I knew in that moment too.
Here’s what I can tell you now: the feelings are real, but they aren’t the truth. What you’re ruminating over is one small, loud slice of a much bigger picture. Cancer is not automatically a death sentence. The horror stories stick harder because they’re what we’re exposed to — not stories like this one, not the ones that fall outside the standard statistical script.
You’re in this now. There’s no way around that part. But you are not lost. There are options. People survive this every single day, quietly — you’ve probably passed some of them on the street without ever guessing what they’d been through. You are going to push through this, whatever the outcome ends up being, and you’ll have access to resources a lot of people miss, including, I hope, some of what’s in this post. That day, that first week, the emotions that hit right after — none of it is your final chapter. Breathe. Take it one day at a time.
Day 1–3: Breathe. Then Start.
Don’t Google your survival statistics. I mean it. I refused to look at mine until much later, and it was one of the best decisions I made. The internet will hand you numbers from studies that don’t know you, don’t account for new treatments, and don’t factor in what you’re about to do. Those numbers will lodge in your head like a weed you can’t get rid of.
My mantra from day one: I am not a statistic. I’m a single case, and this single case gets a vote.
What to actually do right now:
1. Write down everything the doctor said. You won’t remember half of it. The shock scrambles your short-term memory. If you have a partner or friend, bring them to every appointment — two sets of ears. You’ll both likely hear different versions of the same conversation. Compare notes when you’re calmer and back at home.
2. Get a physical folder or notebook. You’re about to be buried in lab results, scan reports, appointment dates, and medication lists. Start organizing now. It sounds mundane, but three months from now you’ll be grateful. Don’t wait on this — it’s like algebra. What you record today becomes the foundation for the equation you’ll need to solve in the next lesson.
3. Don’t make big decisions yet. Not about treatment, not about work, not about money. You don’t have enough information yet. The urge to DO SOMETHING RIGHT NOW is overwhelming, but you need data first. What you were told today will evolve as you progress and things inevitably change.
4. Tell your inner circle. Not everyone — just the people who will show up. You need support, and pretending this isn’t happening wastes energy you can’t afford to waste.
Day 3–7: Get Your Diagnostic Picture
This is where the medical machine kicks in. Expect it to move fast:
Blood work. They’ll draw baseline labs — CBC, metabolic panel, liver function, and critically, your CEA level (carcinoembryonic antigen). CEA is a tumor marker specific to colorectal cancer. It’s not perfect, but it becomes your tracking number going forward. Write it down. You’ll be watching this number for years, with your oncologist as the one interpreting what it means for you.
Most facilities now use a patient portal or app to track all of this. Install the app today — use it. When you can’t get someone on the phone, the portal handles everything: tracking results, comparing numbers, scheduling appointments, and messaging your care team directly. It’s often quicker to send a message than to call, leave a voicemail, and wait for a callback.
CT scan or PET scan. Full-body imaging to see where the cancer has spread (or confirm it hasn’t). This determines your staging. The difference between stage 3 and stage 4 changes everything about your treatment options. No matter what, don’t place too much emotional weight on the stage they assign. Consider it their language — not yours.
Pathology and molecular testing. This is critical and often overlooked in the first rush. Your tumor biopsy should be sent for:
- MSI/MMR testing — Determines if you’re microsatellite instability-high (MSI-H) or microsatellite stable (MSS). This single result dictates whether checkpoint immunotherapy drugs can work for you. About 15% of CRC patients are MSI-H.
- RAS/RAF mutation testing (KRAS, NRAS, BRAF) — Determines which targeted therapies apply.
- HER2 testing — Emerging treatment options if positive.
- Tumor mutational burden (TMB) — Can affect immunotherapy eligibility.
If your oncologist doesn’t order molecular testing within the first two weeks, ask why. This isn’t optional. Treatment without knowing your mutations is like navigating without a map.
Treat this report like gold. It’s your foundation — something I treated as secondary until later, when I realized just how important this data really is. Call the lab that processed it and request the full report, including anything they deemed not significant. You’ll use this data to fuel your research and expand your options, always in partnership with your medical team. When you get it, try not to let it scare you. It’s just information. “Mutation this” and “mutation that” can mean everything or nothing at all. But get it in your back pocket now. You’ll be asked for it when calling about trial eligibility, and it gives you power to know the fingerprint of your biology — and the biology of the disease.
Day 7–14: Understand Your Specific Cancer
Not all colorectal cancer is the same. The field has been changing at breakneck speed — new drugs, new technologies, whole new categories of therapy. The old statistics don’t apply today.
Questions to ask your oncologist:
1. What is my exact staging and where has it spread?
2. What are my molecular/genetic results? (MSI, KRAS, BRAF, HER2) — Even though you have the report, use their explanation as the starting points for your own research to follow.
3. What is the treatment goal — curative or palliative? If they say palliative, don’t let that change your outlook. That’s their assessment in this moment. It can shift in the span of a week with one test result or one new trial opening.
4. What are ALL the treatment options right now — not just what this institution offers?
5. Am I a candidate for surgery now, or after chemo?
6. Should I get a second opinion at a comprehensive cancer center? If they say no — “this is standard of care across the country” — that may be accurate, but standard of care can look different depending on who’s delivering it. If it’s a major decision, get on the phone. You may not realize your insurance doesn’t automatically limit you to the closest facility. You might be surprised at what they’ll cover at some of the most prestigious institutions in the country.
7. What about genetic counseling — could this be hereditary (Lynch syndrome)?
8. Are there clinical trials I should know about for my specific mutation profile? Your genetic report will list the top candidates based on current data, but don’t lean too hard on that alone. It’s very possible you’ll find something none of them are even aware of.
9. Can you connect me with your institution’s clinical trial research team? I want them to start reviewing my eligibility now for anything they uncover — and I’d like to be notified as quickly as possible so I can compare it to my own research.
Write the answers down. Bring someone with you. Record the appointment on your phone if the doctor allows it.
Day 7–14: Get a Second Opinion
I don’t care how good your oncologist is. Get a second opinion. Ideally from an NCI-designated comprehensive cancer center — these are the institutions running the trials and seeing the edge cases.
This isn’t about disrespecting your doctor. It’s about making sure nothing is missed. My local oncologist offered chemo and essentially palliative care. It wasn’t until I went further that doors opened I didn’t know existed.
Major CRC centers to consider:
- MD Anderson (Houston)
- Memorial Sloan Kettering (New York)
- Mayo Clinic (Rochester, Phoenix, Jacksonville)
- NIH Clinical Center (Bethesda) — for clinical trials specifically
- Dana-Farber (Boston)
- City of Hope (Los Angeles)
Many offer virtual second opinions now. You send your records, they review, and you get a written opinion. You don’t have to fly anywhere.
Day 14–21: Start Searching for Clinical Trials
This is where most patients fall behind. Don’t wait for your doctor to bring up clinical trials — search yourself.
I found the trial that may have saved my life — a first-in-human TCR-T cell therapy trial at NIH targeting my specific TP53 Y220C mutation — after three separate research teams had already searched on my behalf and missed it.
Where to search:
- ClinicalTrials.gov — The definitive database. Filter by condition, mutation, location, recruiting status.
- NCI Cancer Information Service (1-800-4-CANCER) — Free, and they can help match you.
- Your cancer center’s trial navigator — Most major centers have a dedicated person for this.
- AI tools — Use them to help parse your mutation profile against trial eligibility criteria. They’re not perfect, but they can surface options you’d miss in a manual search. Whatever you find still goes through your oncologist before it becomes a real option.
Key tip: Learn your mutations first (from molecular testing), then search by mutation, not just by cancer type. A trial that’s recruiting for “KRAS G12D mutant solid tumors” won’t show up if you only search “colorectal cancer.”
Also, look into AI models designed specifically for processing mutational reports. This space is evolving rapidly — so quickly that you may have access to a cutting-edge tool that your medical facility hasn’t even implemented yet.
Day 14–30: Build Your Team
Cancer isn’t a solo sport. Here’s who you need:
- Medical oncologist — Your primary cancer doctor. Manages chemo and systemic treatment.
- Surgical oncologist — If surgery is an option (even eventually), get a surgical consult early.
- Interventional radiologist — For procedures like ablation or embolization of liver mets.
- Genetic counselor — To assess hereditary risk for your family.
- Palliative care (yes, even if curative) — Palliative care isn’t hospice. It’s symptom management — pain, nausea, fatigue, mental health. Get it early.
- Your person — One friend, partner, or family member who comes to every appointment, takes notes, asks the questions you forget, and tells you to eat when you can’t think straight.
My wife devoured twenty books on cancer in two weeks while I couldn’t bring myself to open a browser. She became my research engine, my advocate, and my anchor. If you have someone like that, let them in.
What I Wish Someone Had Told Me
The emotional hit comes in waves. The day of diagnosis you are in shock. Days 3 to 5 the reality sets in. Around week two, you might feel strangely calm. Then something small triggers a collapse. This is all normal.
The system is not built to cure everyone. It is built to offer standard treatment, run standard tests, and give you standard odds. Standard is not enough when there are trials they do not tell you about, options they do not research, and possibilities they do not know exist.
Your oncologist toolbox is not the whole toolbox. He may be excellent and his tools may work. But they are not all that is out there. Research, push, and advocate — alongside your doctors, not around them. If a guy with no medical background and an internet connection can find a trial three professional teams missed, so can you.
Statistics are rearview mirrors. They tell you what happened to other people, in other years, with other treatment options. They do not predict your outcome. The field moves fast. Treatments available today did not exist when most survival statistics were generated.
You are going to be okay starting treatment without all the answers. You will not have a perfect plan on day 30. That is fine. Treatment can begin while you are still gathering information, still searching for trials, still getting second opinions. Start moving and you can course-correct as you learn.
The One Thing I Need You to Hear
When my oncologist compared my cancer to weeds in a yard that would keep coming until the whole yard was overrun, I could feel the panic hit like a runaway train. But I did not accept it.
He had to say that because that is what his statistics told him, and that is what he had in his toolbox. But he and his toolbox were not all that was out there.
I told myself: stay positive, hold on. I refused to be defined by someone else bell curve. And here I am, tumors shrinking, markers dropping, still fighting, still here.
You do not have to copy my path. Your version might look completely different: different treatment, different trial, different supplements, different sources of strength — all worked out with your own medical team. What matters is the posture: refusing to accept passivity as the only option.
The doors are there. Keep opening them.
I am Aaron, a stage 4 colorectal cancer survivor who beat 11% odds. I’m still working on a longer book version of this roadmap — more room to go deep on each piece than a blog post allows. No date yet, but the newsletter is where I’ll say when it’s ready. If this post helped, share it with someone who just got the news.
Keep reading:
- You Are Not a Statistic
- Scanxiety: How to Survive the Wait for Scan Results
- What I Actually Ate During Chemo (and Why)
I’m not a doctor — this is one patient’s experience, not medical advice. Always talk to your own oncologist or care team before changing your treatment, medications, or supplements.
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