Just diagnosed with Colorectal Cancer — what should I do first

Your First Steps After a Colorectal Cancer Diagnosis

I'm sorry you've received this diagnosis. The good news is that taking organized, thoughtful action right now can significantly impact your care. Here's what you should prioritize in these early days:

STEP 1: Build Your Support Team

Find Your "Quarterback" — someone you trust completely who will help coordinate your care. This should be:

• Someone you can talk to honestly about your fears and decisions
• A person who will be with you for the long haul (family member, close friend, or advocate)
• Someone organized who can help you understand your options
• A person with good communication skills who can talk to all your doctors

This person isn't making decisions for you—they're helping you think through them and providing emotional support. As one pancreatic cancer patient advocate noted, "A sorrow shared is a sorrow halved." You shouldn't navigate this alone.

Find a Colorectal Cancer Specialist — According to NCCN Guidelines, patients have better outcomes when treated by specialists who focus on their specific cancer type. Look for:

• An oncologist at a major academic cancer center or research hospital
• Someone current on the latest colorectal cancer treatments
• A surgeon experienced in colorectal procedures (if surgery is recommended)

Even if you receive most treatment locally, get an initial consultation at a major center to help determine your treatment direction.

STEP 2: Gather Your Medical Information

Collect and organize:

• Pathology report (describes the cancer cells)
• Imaging results (CT scans, MRI, colonoscopy findings)
• Lab work and blood tests
• Any biopsy reports

Keep detailed records — Scan these documents and create a digital folder you can easily share with your care team. This becomes invaluable as you move forward.

STEP 3: Ask About Genetic and Molecular Testing

This is critical for colorectal cancer. Ask your doctor about:

Tumor Genetic Testing — Understanding your tumor's specific mutations can open up targeted treatment options. Key tests include:

• Microsatellite Instability (MSI) or Mismatch Repair (MMR) deficiency — If present, this may make you eligible for immunotherapy options
• KRAS, BRAF, and other mutations — These help guide which chemotherapy drugs work best
• Comprehensive genomic profiling — A broader test that looks at multiple genes in your tumor

Germline Genetic Testing — This checks if you inherited cancer-risk genes (like BRCA1/BRCA2) that could affect your treatment and your family's health. Ask about this especially if you have a family history of cancer.

According to CancerPatientLab's webinar on precision medicine, "Without this knowledge, you may not realize there are additional testing or treatment options beyond the standard of care that your doctor initially recommends."

STEP 4: Understand Your Diagnosis

Ask your oncologist to explain in plain language:

1. What stage is my cancer? (Stage I-IV describes how far it has spread)
2. What is the goal of treatment? (Cure, remission, or managing symptoms?)
3. What are my treatment options? (Surgery, chemotherapy, radiation, immunotherapy, or combinations)
4. Are there clinical trials I might be eligible for? (These can offer access to newer treatments)
5. What are the side effects I should expect?

STEP 5: Check Your Insurance Coverage

Before starting treatment:

• Contact your insurance company to understand what's covered
• Ask about your deductible and out-of-pocket costs
• Find out if major academic cancer centers are in-network
• Request an oncology patient advocate from your insurance company (most major providers have them)

STEP 6: Consider Getting a Second Opinion

This is not disloyal to your doctor—it's smart medicine. According to patient advocacy resources, getting a second opinion before starting treatment is especially important because:

• It confirms your diagnosis and treatment plan
• It may reveal additional options you weren't aware of
• Some clinical trials require no prior treatment, so timing matters
• You can get second opinions at major centers quickly

Questions to Ask Your Care Team

• "What additional tests should I get to identify new treatment options?"
• "Can I get comprehensive genomic profiling of my tumor?"
• "Are there clinical trials I might qualify for?"
• "What is the risk-to-benefit ratio of the treatment you're recommending?"
• "How will we know if treatment is working?"
• "What support services are available to me and my family?"
• "Who should I call with questions between appointments?"

Important Resources

According to NCCN Guidelines and the American Cancer Society, these organizations can help:

• National Comprehensive Cancer Network (NCCN) — nccn.org (find specialists, access guidelines)
• American Cancer Society — cancer.org (information, support services)
• National Cancer Institute (NCI) — cancer.gov (clinical trials, patient information)
• Colorectal cancer advocacy groups — can connect you with specialists and support

Take Your Time (But Not Too Much)

While colorectal cancer requires timely treatment, you have time to:

• Get a second opinion
• Understand your options
• Gather your [ID removed]
• Find the right care team

You don't need to make all decisions immediately. Focus on the next step, not the entire journey.

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This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.