Navigating medical information: the patient’s guide to understanding oncological documents

Facing a cancer diagnosis brings not only a strong emotional impact but also a considerable flow of medical information. Test results, imaging reports, histopathological bulletins – all contain technical terms and data that can seem overwhelming. Understanding these documents is essential to actively participate in your own healing process.

Why is it important to understand your medical documents?

• Active involvement in decisions: When you understand the diagnosis and stage of the disease, you can discuss treatment options more informedly with your doctor.

• Reduced anxiety: The unknown can generate fear. Clarifying medical information can reduce anxiety and feelings of helplessness.

• Better communication with the medical team: If you have a knowledge base, you can ask more relevant questions and better understand the doctors’ explanations.

• Care coordination: If you consult multiple specialists, understanding your own medical history facilitates better care coordination.

Main types of oncology documents and what information they contain:

1. Histopathological bulletin (biopsy result):

   • What it is: Microscopic analysis of a tissue sample taken from the suspicious area.

   • Key information: Confirms or refutes the presence of cancer; the exact type of cancer (e.g., adenocarcinoma, squamous cell carcinoma); the tumor’s grade of differentiation (how aggressive the cells appear); presence of invasion into surrounding tissues or blood/lymphatic vessels; sometimes, specific markers (see below).

2. Immunohistochemistry (IHC) result:

   • What it is: A special technique applied to the biopsy sample to identify certain proteins (markers) on the surface or inside cancer cells.

   • Key information: Helps to more precisely classify the cancer; may indicate the presence of hormone receptors (e.g., ER, PR in breast cancer) or other markers (e.g., HER2), which are crucial for choosing targeted therapies.

3. Imaging reports (CT, MRI, PET-CT, ultrasound, X-ray):

   • What they are: Describe what is observed in the images obtained through different techniques.

   • Key information: Location and size of the primary tumor; extent of the disease to regional lymph nodes; presence of metastases (spread of cancer to other organs); response to treatment (whether the tumor has shrunk or grown). Note: these are written interpretations, not the raw images.

4. Blood tests (complete blood count, biochemistry, tumor markers):

   • What they are: Measure different components and substances in the blood.

   • Key information: Overall health status (e.g., anemia, liver and kidney function); certain tumor markers (substances produced by cancer cells or the body in response to cancer) may suggest the presence of the disease or can be used to monitor treatment response (e.g., CEA, CA 19-9, PSA). Important: tumor markers are not always specific for cancer and must be interpreted in clinical context.

5. Medical letters and discharge summaries:

   • What they are: Summaries of consultations or hospitalizations.

   • Key information: Principal and secondary diagnoses; treatments performed or recommended; evolution of health status; follow-up plan.

How can technology (especially AI) help “translate” this information?

Medical terminology can be a barrier. Artificial intelligence and other technological tools are starting to offer solutions to make this information more accessible to patients, of course, always as support for the discussion with the doctor, not as a substitute.

• Data extraction and structuring: AI systems can “read” medical documents (scanned or digital) and extract key information, presenting it in a more organized and easy-to-follow format.

• Explanation of medical terms: Certain platforms or applications can provide definitions and explanations for complex medical terms directly from the context of your documents.

• Information correlation: AI can help correlate data from different reports (e.g., how the biopsy result relates to CT findings), providing an overview.

• Generating personalized summaries: Based on uploaded documents, an advanced AI system, supervised by a doctor, can generate a summary of your case in more accessible language, highlighting the most important aspects.

• Identifying relevant questions: By analyzing the information, AI can suggest questions you might want to ask your doctor to better understand the situation.

Your role and the doctor’s role

• Don’t hesitate to ask: Your doctor is the main source of information. Ask for explanations whenever something is unclear.

• Keep a copy of all documents: Organize your medical file.

• Use technology with caution: Online tools and AI can be useful, but always verify information with your doctor. Do not self-diagnose or make treatment decisions based solely on online information.

• Write down your questions: Before consultations, prepare a list of questions you have.

Conclusion

Navigating medical information can be challenging, but it is an essential step towards better managing your health. Understanding oncology documents empowers you and gives you control. Technology, including artificial intelligence, supports this endeavor by facilitating access to information and “translating” medical language. However, open partnership and constant communication with your doctor remain the cornerstone of an informed and effective medical journey.