Checklist For Newly Diagnosed Patients

As overwhelming as a pancreatic cancer diagnosis can be, it is important to act quickly and put a treatment plan into place. While it is important to identify the right treatment team, do not delay. Treatment should ideally begin within one month after you receive your diagnosis. 

The Lustgarten Foundation is committed to helping you fight this disease and we have developed the checklist below for immediate steps that you and your loved ones should take upon receiving this diagnosis.

Understand your disease.

Staging cancer is a standardized way to classify a tumor based on its size, whether it has spread and where it has spread. The stage of your pancreatic cancer impacts treatment. 

Get genetic testing.

According to guidelines from the National Comprehensive Cancer Network, all pancreatic cancer patients should undergo genetic or germline testing for inherited genetic mutations, regardless of family history. Under these new recommendations, this testing should be done by your physician and should be covered by insurance. This blood or saliva testing can have implications for family members and can guide your pancreatic cancer treatment program. 

There are also companies like Color Genomics or Myriad Genetics that can do the testing. Additionally, the Invitae Detect Hereditary Pancreatic Cancer genetic testing program provides no-charge genetic testing and counseling to patients with pancreatic cancer.

Ask about tumor testing.

Tumor testing, also known as somatic testing, is still in the early stages of being studied. Ask your doctor about having your tumor tested for genetic mutations, which in some instances can help identify additional therapy programs.

Seek opinions from experts.

Get two opinions and make sure one is from a large academic institution that specializes in treating pancreatic cancer. Learn more about identifying a treatment doctor and facility here.  

Know your healthcare team.

Treating pancreatic cancer requires an interdisciplinary approach that includes your oncologist and other specialists who will be involved in your care. Continue to see other doctors who are involved in your overall care, such as your internist.

Contact your insurance company.

Thoroughly understand your health insurance policy. Know what services are covered and what your out-of-pocket obligation will be per calendar year. Request a case manager to help you optimize your benefits and navigate the intricacies of your policy.

Get organized.

Record your questions in a notebook and bring it with you to all doctors’ appointments. Use it to keep track of test results and appointment dates. Write down the contact numbers of all your doctors in one place or save them in your cell phone. Know the number to call if you have a problem or concern after hours or on a weekend.

Develop a support system.

Have someone accompany you to oncology appointments for support and clarification of the proposed plan of care.

Delegate responsibilities.

Enlist the help of family members, friends, and neighbors who can help with errands or chores, meal preparation and driving.

Control what you can.

Closely monitor your nutrition, physical activity, and pain level and provide feedback to your healthcare team. Utilize complementary therapy such as Reiki therapy, yoga, meditation, acupuncture and pet therapy.

Initiate goals of care.

Incorporate the palliative care team to help you control your symptoms and have a better quality of life. Proper symptom management will help you stay on your treatment plan. Palliative care doesn’t mean you are giving up.

Take care of your emotional health.

Maintain daily routines and continue to partake in activities you enjoy as much as possible. If needed, seek out supportive services such as counselors, social workers and support groups.

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