QUESTIONS TO ASK ABOUT
RARE CANCER
Knowing what questions to ask โ and asking them clearly โ is one of the most practical tools a rare cancer patient has. These are specifically calibrated to the diagnostic and access challenges of rare cancers.
Questions About the Diagnosis
Diagnostic precision is the foundation of all rare cancer treatment decisions.
Key Questions
What is the exact histological diagnosis including subtype and grade? Has the pathology been reviewed by a specialist in this tumour type? What is the WHO classification? Has pathology changed since initial diagnosis? Is a fresh biopsy needed?
Questions About Molecular Testing
Molecular testing completeness is the most frequently missed area in rare cancer management.
โMissing a single molecular test โ NTRK fusion, MSI status, TMB โ can mean missing an effective treatment that exists today.โ
Essential Testing Questions
Has comprehensive genomic profiling (not just hotspot testing) been done? Has RNA-based fusion testing been performed for NTRK, RET, ALK, FGFR fusions? Has MSI/MMR status been tested? Has TMB been measured? Has PD-L1 been assessed? For GI tumours: has Claudin18.2 been tested?
Questions About Treatment Options
Treatment Questions
What is the standard of care for my specific tumour type โ based on evidence from my tumour or extrapolated from common cancers? Are there targeted therapies for my molecular alterations? Are there immunotherapy options? Are there clinical trials I'm eligible for? Have you consulted with a specialist in this rare cancer? Would you recommend a second opinion?
Questions About Clinical Trials
Trial-Specific Questions
Is there a trial for my tumour type and molecular profile? Is there a basket trial based on my molecular alteration? Has the trial been searched on both ClinicalTrials.gov and ChiCTR (Chinese registry)? What does eligibility depend on? What does preliminary data show? How does participation affect other treatment options?
Questions About International Access
These address the specific access dimension that CancerFax is built around.
Access-Specific Questions
Are treatments available internationally that aren't available here? Are there Chinese clinical trials for my molecular alteration? Are there therapies approved in China for my alteration that aren't available domestically? Is there specialist rare cancer expertise in China for a second opinion? Would you recommend a CancerFax case review?
Questions About Prognosis and Supportive Care
Prognosis Questions
What is the typical clinical course? What does published literature say about median OS and response rates? How does molecular profile affect prognosis? What is the goal of each option โ curative, disease control, or symptom management?
Supportive Care Questions
For functional tumours (NETs, ACC): what hormone management is needed? For sarcomas: what rehabilitation after surgery? For brain tumours: what cognitive and neurological support? What palliative care, pain management, and psychological support resources are available?
Frequently Asked Questions
About Asking the Right Questions
How CancerFax Helps
CancerFax is a specialist cancer access and patient-navigation platform. We help patients and families understand their options, organise medical records, coordinate hospital communication, and support cross-border treatment planning where appropriate.
We help collect and organise reports, scans, pathology, biomarker results, and treatment history for structured case review.
We communicate with hospitals or trial teams to assess whether a case may be suitable for further screening.
We support appointment coordination, document submission, translation, and direct communication with international departments.
For international patients, we help with practical coordination โ travel planning, hospital admission guidance, and local support.
If this option is not suitable, we help explore other relevant treatments, clinical trials, or advanced care pathways.
From inquiry through to follow-up, our coordinators provide a single point of contact for the family.
CancerFax does not guarantee treatment access, eligibility, or clinical outcome. Our role is to help patients access accurate information, structured review, and appropriate specialist pathways.
Ready to Get Answers to These Questions?
Submit your medical records for a CancerFax case review that answers the key questions about Chinese treatment access, molecular testing completeness, and clinical trial eligibility for your specific rare cancer.
This content is for informational purposes only and does not constitute medical advice. Always consult a qualified oncologist before making treatment decisions.