A Road Map for Newly Diagnosed Patients with Pancreatic Cancer

This is the fourth blog from Let’s Win Pancreatic Cancer. To learn why patients with pancreatic cancer and their oncologists should investigate clinical trials immediately after diagnosis, read the third blog here.

Approximately 64,000 people in the US will be diagnosed with pancreatic cancer this year and from that moment on, each of their lives will change drastically. Hearing the words, “you have pancreatic cancer,” is shocking, devastating, emotional, and overwhelming for the patient and their loved ones. They likely won’t know what to do at first, or second, or third.

How can we help patients navigate the difficult journey that lies ahead?

Resources for the Newly Diagnosed

Let’s Win Pancreatic Cancer provides a road map of resources to help newly diagnosed patients with pancreatic cancer obtain the resources they need throughout their care journey. Helping patients orient themselves within their new normal can make a world of difference. A simple guide called, What to Do If You Are Newly Diagnosed with Pancreatic Cancer, walks patients through steps they can follow as they start treatment and move forward. Providers and patients alike can be confident that the information found on the Let’s Win portal is accurate, reliable, and up to date as all of it is medically vetted by experts within the field. Further, all our information is available in English and Spanish.

Let’s Win wants to provide every patient with information that is accessible and easy to understand, enabling them to make decisions about their treatment with confidence. A walk through the three main steps of Let’s Win’s guide for newly diagnosed pancreatic cancer patients will make this clear.

Step One: After Diagnosis

Knowledge is power. This includes recommendations such as:

● Gathering information: Absorbing information about a diagnosis can be overwhelming when patients are in their provider's office. Let’s Win provides an introduction to pancreatic cancer basics that is simple to understand and accessible anywhere at any time. There is also an extensive glossary of terms related to pancreatic cancer that clarifies the complicated terminology that patients will hear throughout the course of their treatment.

● Considering clinical trials: Let’s Win partners with EmergingMed to provide a customized tool that helps patients find clinical trials. A trial could change the course of a patient’s treatment.

● Finding and using resources: This is what Let’s Win is all about! Whether it is symptoms, treatment options, disease management, or research, Let’s Win has it all in one place so that patients or their loved ones can access information whenever and wherever they need it. More importantly, we reassure everyone that each patient is a statistic of 1.

Step Two: Beginning Treatment

Patient needs shift rapidly during treatment and it may be difficult for them to keep up.

● Organization: Being organized is easier said than done. Best practices gathered from cancer survivors and other experts, such as keeping a record of all questions, notes, and results in one notebook, can help make a patient’s journey manageable.

● Developing support systems: Let’s Win believes that support groups provide an emotional lift. Patients and loved ones can learn about the resources available and find fellow patients through the Pancreatic Cancer Connections community, along with other sources such as the Facebook communities.

Step Three: Helping Patients Care for Themselves

Patients need support from other sources to manage side effects as well as the mental and emotional strain of treatment. The resources on Let’s Win help patients walk through options such as:

● Exploring hospital support: Many cancer centers and programs have integrative oncology programs that treat the whole person. This type of integrative cancer care adds complementary therapies such as acupuncture, massage, yoga, and meditation, along with traditional medicine.

● Taking care of nutritional health: Both the disease and its treatment can make maintaining a healthy weight challenging. Finding a nutritionist and/or understanding the whys and hows of pancreatic enzyme replacement therapy can result in a significant improvement in quality of life and treatment outcomes.

A Simple Path to Follow

While this road map cannot take the place of the medical guidance healthcare providers give patients throughout their journey, it can provide them and their loved ones with a simple path to follow, while giving them access to critical resources and connecting them with a community of hope. Better outcomes are the end goal for everyone. Thus, Let’s Win wants to help patients and their providers at every step of the way.