Two Patients Find Guidance and Hope Through Leading-Edge Know Your Tumor  Service

Home About the Pancreatic Cancer Action Network Pancreas Matters email newsletter archive Two Patients Find Guidance and Hope Through Leading-Edge Know Your Tumor  Service

KnowYourTumor-Logo-stacked-300xRobert didn’t know exactly what his oncologist meant when he recommended “Know Your Tumor.”  But soon enough, this pancreatic cancer patient found hope for a treatment better suited to his needs after he followed his doctor’s suggestion – call the Pancreatic Cancer Action Network to inquire about this new service.

When Robert made the call, Patient and Liaison Services (PALS) Associate Emily Lyons carefully explained the details of the Know Your Tumor  service and answered all of his questions.

Know Your Tumor  provides patients who meet specific criteria access to molecular profiling of their tumor. Molecular profiling gives information about the biological makeup of a tumor. To be eligible for the service, patients must have stage 4 (metastatic) pancreatic adenocarcinoma, and they must have started or be about to start treatment for their metastatic pancreatic cancer.

Know Your Tumor  is a “personalized medicine” service, meaning it looks into the unique biology of each patient’s tumor and how that may indicate the value of a specific treatment. The results from the profiling analysis are compiled into a report that includes possible treatment options, including clinical trials. The report is reviewed by a team of experts and then given to the patient and his or her doctor so they can use it to plan treatment tailored specifically to that patient. In addition, each patient’s participation in Know Your Tumor contributes to critical research that may result in promising new therapies and diagnostics for the disease.

“With his survival as his priority, Robert wanted to be crystal clear about the service’s details,” said Lyons. “For example, he learned that Know Your Tumor  is not a clinical trial and that the coordination of the necessary biopsy and tumor analyses are handled by one of our partners.”

PALS Associate Emily

PALS Associate Emily Lyons

When a patient qualifies, the PALS Associate connects him or her to our Know Your Tumor  partner Perthera, a leading personalized cancer therapy company. Perthera speaks with the treating physician, coordinates the biopsy and then sends it to the diagnostic labs for analysis. The costs for coordinating the tumor testing and the development of the report are covered by the Pancreatic Cancer Action Network. The patient’s insurance company is billed for the biopsy, the molecular tests and other related medical costs.

Once Robert felt comfortable with the details, he didn’t waste any time. He confirmed his eligibility and got his biopsy.

Robert’s report pointed to the possible value of using a drug that would target a specific mutation in his tumor. The drug was one that wouldn’t normally be prescribed for pancreatic cancer, so his oncologist hadn’t previously considered it. After Robert and his doctor reviewed the report, they chose to move forward with the new treatment.

Lyons noted, “Robert told us that he was impressed not only with the report but also with the whole process. Perthera devoted a good deal of time to speaking with Robert’s son, his caregiver, about his case.” She continued, “As a person and a patient, Robert was deeply moved by all of the attention that was given to his well-being.”

Another clear benefit of the Know Your Tumor  service is patient empowerment. Like personalized medicine services for other cancers, it can give patients specific information about their tumor that opens the door for discussion with their healthcare team about their cancer and how to treat it.

PALS Associate Anica Lamkin found that Know Your Tumor  empowered one patient – Lori – to find her “survivor” voice through the process. Going through the medical system can be intimidating, and Lamkin remarked, “Lori felt empowered by the comprehensiveness and credibility of her report, which helped her advocate for herself.”

PALS Associate Anica Lamkin

PALS Associate Anica Lamkin

“She was amazed by how smooth the entire process was and found the transition from our organization to Perthera to be simple and straightforward. Overall, she said it’s been one of the easiest parts of her cancer journey,” said Lamkin.

Patients such as Lori, who is already on a treatment regimen, are using their reports with their physicians to decide on their next round of treatment.

“Patients and their doctors are presented with information about molecular abnormalities that encourage consideration of treatment options that might not have otherwise been considered. They may also gain information that could lead them to decide against specific treatments,” said Anitra Engebretson, Director of Patient Services and Medical Relations. “Even if a patient’s report doesn’t suggest any strong relationships between a patient’s tumor and specific therapies, the participant still gains insights from another medical specialist. Plus, all Know Your Tumor  participants receive a list of clinical trials that may be suitable options.”

Know Your Tumor  is exciting for oncologists, too, because it is the first initiative to apply molecular profiling to pancreatic cancer treatment in such a patient-centric way. Doctors have been recommending this service to their patients because they trust the reports scientifically and medically, which can help them develop a more effective treatment plan for their patients.

“It’s often the case that pancreatic cancer patients are doing all they can to simply manage their disease, while physicians and loved ones are trying to manage the overall care. Everyone involved is working to keep hope alive, and the Know Your Tumor  service can help support that hope,” said Lyons.

If you are interested in learning whether you or a loved one qualifies for the Know Your Tumor  service, please call 877-272-6226, Monday – Friday, 7 a.m. – 5 p.m. PT, or email a PALS Associate at pals@pancan.org.

This story reflects the experiences of individual patients; the results of their participation in the Know Your Tumor service should not be considered typical.

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