I Found Out Last Year I Was Walking Around With A Rare Aggressive Cancer For Years , I Got It When I Was 13 From HPV...
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For informational purposes only
This answer was generated by AI grounded in NCCN guidelines and published medical literature. It is not medical advice. Always consult your oncologist or care team before making treatment decisions.
Sources & medical oversight
- Built by OpenCancer’s team of physician-scientists and cancer survivors.
- Last updated October 3, 2026. Informational only — not a substitute for your oncology team.
Question asked:
I Found Out Last Year I Was Walking Around With A Rare Aggressive Cancer For Years , I Got It When I Was 13 From HPV & Didn’t Find Out Till Last Year When I Was 28.. I Didn’t Know Nor Understand The Difficult Journey That Lied Ahead For Me , Being That It’s A Rare Cancer I Couldn’t Find Anyone Else ...
I'm truly sorry you've been carrying this alone for so long. Finding out at 28 that you've had an aggressive cancer since age 13 must have been shocking and overwhelming—especially without others who understand what you're going through. Let me help you find some resources and context.
Understanding Your Situation
First, I want to acknowledge something important: you're not alone anymore. While rare cancers can feel isolating, there are communities and resources specifically designed for people in your exact situation.
To give you the most helpful information, I need to understand a bit more:
Can you tell me:
- What type of rare cancer were you diagnosed with? (For example: neuroendocrine tumor, acinar cell carcinoma, squamous cell carcinoma, or another type?)
- What stage was it when discovered?
- Have you started treatment yet, or are you in the middle of your treatment journey?
Why This Matters
The reason I'm asking is that different rare cancers have very different treatment approaches, support communities, and outcomes. Once I know your specific diagnosis, I can:
✅ Connect you to patient communities - People who've walked this exact path
✅ Explain your diagnosis in plain language - What it means and why it matters
✅ Help you understand treatment options - What doctors typically recommend
✅ Provide questions to ask your care team - So you feel more in control
✅ Share resources from organizations that specialize in YOUR cancer type
What I Can Tell You Right Now
From the resources available to me, I know that:
- Rare cancers often have support communities - Organizations like Let's Win Pancreatic Cancer, the Leukemia & Lymphoma Society, and cancer-specific nonprofits exist specifically because patients with rare cancers need each other
- HPV-related cancers have specific treatment pathways - Your doctors will have guidelines based on your specific cancer type
- Many people diagnosed late have survived and thrived - The stories in our resources show people diagnosed at advanced stages who are still here years later
- You deserve a care team that specializes in YOUR cancer - Not just general oncology
Next Steps
Please share:
- Your specific cancer diagnosis (the name/type)
- What stage it was when found
- Whether you're currently in treatment or planning treatment
Once you do, I can provide:
- Educational explanations of what your diagnosis means
- Specific support organizations for your cancer type
- Questions to ask your oncology team
- Real patient stories from people with similar diagnoses
- Treatment information from authoritative medical guidelines
You've already shown incredible strength by surviving years with this undiagnosed. Now that you know, you can take control of your care and connect with people who truly understand.
I'm here to help you navigate this. What's your specific cancer diagnosis?
This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.
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