PATIENTS
Understanding Your Diagnosis
A cancer diagnosis can bring unfamiliar words, test results, appointments, and decisions all at once.
This guide can help you understand the basic information in your diagnosis, the people who may be part of your care team, and a few key terms you are likely to hear along the way.
1
START WITH THE BASICS
What do I need to know first?
Cancer is usually named for the part of the body where it began. Knowing the exact type of cancer, the stage, and the grade can help you and your care team make decisions about your treatment and next steps.
Key information to know:
The exact name of the cancer
Where it started
Whether it has spread
The stage, if one has been assigned
The grade, if one has been assigned
Whether additional test results are still pending
2
Understanding Stage and Grade
Stage and grade tell your care team different things about your cancer. Stage generally describes how much cancer is present and whether it has spread beyond where it began. Grade describes how abnormal the cancer cells look under a microscope and may give your care team information about how quickly the cancer could grow or behave.
Not every cancer uses the same staging or grading system, so the most important thing is understanding what your stage and grade mean for your specific diagnosis.
Stage: Where is the cancer and how much is there?
Grade: What do the cancer cells look like and how might they behave?
Questions to Ask Your Care Team
What is my stage?
What is my grade?
Has the cancer spread?
What do my stage and grade mean for my treatment?
Are there any test results still needed before my stage is final?
3
Understanding Your Pathology Report
A pathology report is one of the most important documents in a cancer diagnosis. It contains information from tissue or cells that were examined in a laboratory. Depending on your cancer and the procedure performed, the report may include the exact type of cancer, tumor size, grade, information about lymph nodes, surgical margins, biomarkers, or other characteristics that may help guide treatment.
The language can be highly technical. You are not expected to interpret the report on your own.
What to Look For :
The exact diagnosis
Cancer type
The grade, if one has been assigned
Grade
Lymph node findings, when applicable
Margins after surgery, when applicable
Biomarker or receptor results
Any results that are still pending
Ask Your Care Team :
“What are the three most important things in my pathology report that I need to understand?”
Does anything in this report affect my treatment options?
Are we waiting for any additional results?
Do I need biomarker testing or other testing based on this report?
Keep a copy of your pathology report with your other cancer records.
4
Cancer Testing
Some tests help confirm a diagnosis. Others help determine whether cancer has spread or provide information that may guide treatment.
Two types of testing you may hear about are biomarker testing and genetic testing.
Not all cancer testing answers the same question.
Biomarker Testing
Genetic Testing
Biomarker testing looks at characteristics of the cancer itself and may help your care team understand the cancer or determine whether certain treatments may be appropriate.
Genetic testing looks for inherited changes that may affect you or your biological family.
5
Your Treatment Plan
Treatment is rarely just one decision.
Your treatment plan is the recommended approach to treating your cancer. Depending on your diagnosis, it may include surgery, radiation therapy, chemotherapy, immunotherapy, hormone therapy, targeted therapy, active surveillance, or a combination of treatments. The plan may also change as your care team receives new test results or sees how your cancer responds to treatment. You do not have to memorize every treatment available. Focus on understanding why a treatment is being recommended for you.
What You Should Know
What treatment is being recommended and why?
What is the goal of the treatment?
How soon does treatment need to begin?
Are there other reasonable options?
Could biomarker or genetic test results affect the plan?
What side effects should I watch for?
How will we know if the treatment is working?
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Your Care Team
Cancer care often involves a team of specialists and support professionals. Each person plays a different role, and knowing who does what can make it easier to know where to turn when you need help.
You may have more people on your care team than you realize.
Medical Oncologist
Surgical Oncologist or Surgeon
Radiation Oncologist
Oncology Nurse
Patient Navigator or Nurse Navigator
Oncology Social Worker
Registered Dietitian
Genetic Counselor
Palliative Care Specialist
Primary Care Provider
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Keep Your Cancer Information Together
Cancer care can involve multiple appointments, specialists, reports, and test results. Keeping your information organized can make it easier to manage appointments, ask questions, share records, and communicate with your care team.
Pathology reports
Imaging reports
Lab results
Medication list
Treatment plan
Biomarker or genetic test results
Appointment notes
Insurance information
Family health history
Names and contact information for your care team
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Know Your Next Step
Before you leave an appointment, try to understand exactly what happens next.
What happens next?
When does it happen?
Who schedules it?
Do I need to do anything before then?
What symptoms should I report?
Who should I call if I have a question?
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Common Terms You May Hear
Cancer care can come with a lot of unfamiliar language. Here are a few terms you are likely to hear and what they generally mean.
Biopsy
A procedure used to remove cells or tissue so they can be examined for cancer.
Remission
A period when the signs and symptoms of cancer have decreased or disappeared.
Tumor
An abnormal growth of tissue. A tumor can be benign, meaning not cancer, or malignant, meaning cancer.
Recurrence
Cancer that returns after a period when it could no longer be detected or after treatment had ended.
Metastasis
Cancer that has spread from where it began to another part of the body.
Prognosis
A healthcare provider’s assessment of how a disease may progress and what outcomes may be expected. A prognosis is not a guarantee of what will happen.
Lymph Nodes
Give them specific jobs instead of carrying everything yourself.
Treatment Plan
The recommended approach to treating your cancer, which may include one or more types of treatment.
Biomarker
A characteristic of a cancer, such as a gene, protein, or other feature, that may provide information about the cancer or help guide treatment.
Clinical Trial
A research study involving people that evaluates new approaches to preventing, diagnosing, or treating disease.