What should I know as a newly diagnosed CRC patient

What You Should Know as a Newly Diagnosed Colorectal Cancer Patient

I'm glad you're seeking information early in your journey. Here are the essential things to understand right now:

Start With Comprehensive Testing

According to NCCN Guidelines and ASCO recommendations, you should have several key tests done to understand your specific cancer:

• Tumor tissue analysis - This examines your cancer cells to identify important characteristics
• Genomic/molecular profiling - This identifies specific mutations (genetic changes) in your tumor that could guide treatment choices. As emphasized in the LEAF Webinar on "Self-Advocacy in the Era of Precision Medicine," you should advocate for comprehensive genomic profiling of your cancer, as this can uncover actionable mutations that personalize your treatment beyond standard options
• Staging tests - Imaging (CT, MRI) to see if cancer has spread
• Blood tests - To assess your overall health and establish a baseline

Important: Don't assume standard testing is enough. Ask your doctor: "Can I get a comprehensive genomic profile? What additional tests could identify new treatment options for my specific cancer?"

Build Your Medical Team

• Seek an oncologist experienced in colorectal cancer - ideally at a cancer center or hospital with strong cancer programs
• Consider getting a second opinion on your diagnosis and treatment plan
• Ask about access to a genetic counselor if there's any family history of cancer

Organize Your Medical Information

Following NCCN Guidelines recommendations:

• Create a medical binder or notebook with copies of all test results, pathology reports, imaging studies, and genetic testing reports
• Keep a list of your care team's contact information
• Bring this binder to every appointment—you may need it for second opinions or consultations

Ask Critical Questions About Your Treatment

According to the LEAF Webinar "Self-Advocacy in the Era of Precision Medicine," you should ask:

• "What is driving my tumor growth?" (What mutations does it have?)
• "Are there alternative treatment options besides the standard treatment?"
• "Should I consider clinical trials?" (Especially if your tumor has specific mutations)
• "Under what circumstances will you change treatment if current options aren't effective?"
• "Can I get a copy of my genomic test report?"

Understand Your Unique Cancer Profile

Not all colorectal cancers are the same. Your treatment should be personalized based on:

• Stage (how far it has spread)
• Molecular characteristics (specific mutations like KRAS, BRAF, MSI status, etc.)
• Your overall health

Consider Clinical Trials Early

As patient advocates emphasize, explore clinical trials earlier in your treatment journey—they may offer better outcomes than standard options, especially if your cancer has specific genetic characteristics.

Build Your Support System

• Enlist help from friends and family for transportation, meals, and emotional support
• Bring someone to appointments to help take notes and ask questions
• Connect with patient communities and support groups—they provide both practical and emotional support
• Ask your care team for resources and support services available to you

Key Takeaway

Your colorectal cancer is unique to you. By getting comprehensive testing, asking informed questions, and staying organized, you're taking control of your care. Don't hesitate to advocate for yourself—your medical team is there to partner with you in finding the best treatment plan for your specific situation.

Next step: Schedule a consultation with your oncologist and bring a list of questions. Ask specifically about genomic testing if it hasn't been done yet.

Is there a specific aspect of your diagnosis or treatment you'd like to understand better?