Know Your Tumor FAQs for Patients

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Every pancreatic tumor is different. The Pancreatic Cancer Action Network strongly recommends molecular profiling of your tumor to help determine the best treatment options.

What is molecular profiling?

Molecular profiling is a scientific process that tells you the biological details of your tumor, including genetic mutations and protein changes. It is important to consider this information because a treatment that works well for one person may not work as well for someone else. Knowing the mutations in your tumor will help you and your healthcare team select treatment options – including clinical trials – that are likely to work best for you and may not have been considered otherwise. Know Your Tumor reports and treatment options are reviewed by an expert panel, providing valuable insight to help support the treatment decisions you make with your healthcare team.

How long will it be before I receive my Know Your Tumor report?

It will take approximately 30–45 days from the time Perthera receives your tissue until you receive the report. If you are not currently on treatment, you should begin treatment decided upon by you and your doctor while waiting to receive the molecular profiling report. Upon receiving the Know Your Tumor report, you and your doctor can review the molecular profiling information to guide the decision on your next treatment, if needed. If you are currently on treatment, you should continue that treatment, but also initiate the KYT process as soon as possible so that you may have the molecular profiling report available if you need to make another treatment decision.

Who is Perthera?

Perthera is a comprehensive precision medicine company that the Pancreatic Cancer Action Network partners with to help pancreatic cancer patients undergo molecular testing of their tumor. Perthera will:

  • Ask you to sign consent forms
  • Contact your doctor
  • Coordinate the tissue sample – In most cases, tissue sample is obtained for molecular profiling through either a biopsy or surgical resection
  • Coordinate the molecular profiling
  • Compile the report, including expert review
  • Be in contact with you and your doctor throughout the Know Your Tumor process to ensure that all of the necessary steps are completed

What will Know Your Tumor cost me?

The Pancreatic Cancer Action Network covers the full cost of Perthera’s services for patients enrolled in Know Your Tumor. This includes:

  • Working with doctors and patients to coordinate procedures, such as a biopsy, to obtain tumor tissue for testing
  • Sending the tissue to the laboratories for testing
  • Having a panel of pancreatic cancer experts interpret the test results
  • Providing the patient and his/her doctor with a report that gives information about the unique characteristics of the patient’s tumor and a list of treatment options for the doctor and patient to consider
  • Medical procedures – including biopsies – and molecular testing will be billed to the patient’s insurance. The patient will be responsible for any co-pay, co-insurance or insurance deductible associated with a procedure to obtain tumor tissue and for the molecular testing.

    Perthera’s patient coordinator can provide information on applying for financial assistance programs available through the molecular testing laboratories used to help reduce or eliminate the bill for molecular testing.

    Should insurance coverage issues arise, our Know Your Tumor CareLine (in partnership with the Patient Advocate Foundation) may be able to help.

What if my insurance will not cover the biomarker-based treatment on my report?

Our Know Your Tumor CareLine (in partnership with the Patient Advocate Foundation) can help you navigate insurance challenges that arise, including obstacles to getting coverage for treatment listed on your Know Your Tumor report.

What is the Patient Registry, and why am I signing up?

The Pancreatic Cancer Action Network’s Patient Registry is a global online database created to look for patterns in treatments, side effect management and diagnostics that will lead to improved treatment options and outcomes for patients. By joining this growing community and sharing your experiences – including your Know Your Tumor report – you’re giving researchers access to crucial data that will help them make discoveries that will improve treatment options and outcomes. Together, we will move pancreatic cancer research and patient care forward.

What will I have to do during the Know Your Tumor process?

You and your doctor both play an important role in this process. You will be asked to fill out consent forms, undergo a procedure to obtain a tissue sample (if one is not already available) and participate in the Patient Registry. You should let your doctor know this service is important to you. In order to receive your report as quickly as possible and ensure program completion, it is important for you and your doctor to respond to any communication from the Pancreatic Cancer Action Network and Perthera in a timely manner.


For more information about Know Your Tumor or to enroll, contact Patient Central
877-272-6226 | patientcentral@pancan.org
 


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