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PubMed This is a summary of 21 peer-reviewed journal articles Updated
Medical Oncology

Starting Your Journey: Understanding Your Diagnosis

At a Glance

After an exocrine pancreatic cancer diagnosis, doctors identify the tumor type, determine whether surgery may be possible, check genetic and overall health factors, and coordinate treatment with a multidisciplinary team that also supports digestion, nutrition, symptoms, and quality of life.

Receiving a diagnosis of pancreatic cancer is often a profound shock. Because early symptoms are frequently subtle or mimic common digestive issues, many people are diagnosed only after the disease has progressed [1]. It is normal to feel overwhelmed, but your first step is to orient yourself within a complex medical landscape. Understanding the type of cancer you have and the team you need is essential for moving forward with a clear plan.

Defining the Disease: Exocrine Pancreatic Carcinoma

The pancreas contains two main types of cells: exocrine cells, which produce enzymes to help you digest food, and endocrine cells, which produce hormones like insulin to regulate blood sugar. About 95% of all pancreatic cancers start in the exocrine cells [2].

  • Pancreatic Ductal Adenocarcinoma (PDAC): This is the most common form, accounting for approximately 85% to 90% of cases [2][1]. It typically begins in the lining of the ducts that carry digestive enzymes out of the pancreas.
  • Pancreatic Acinar Cell Carcinoma (PACC): This is a much rarer form, representing only about 1% to 2% of cases [3]. PACC is biologically different from PDAC; it often forms larger, well-defined masses and may be associated with “lipase hypersecretion syndrome,” which can cause skin lesions or joint pain due to the excess enzymes the tumor releases [3][4].
  • Mixed Tumors: Occasionally, a tumor may contain a mix of both ductal and acinar cells [5].

How the Disease Works

Pancreatic cancer is biologically aggressive because of how it interacts with the body. Most PDAC cases are driven by a mutation in the KRAS gene, which acts like a “broken switch” that stays in the “on” position, telling cells to grow and divide uncontrollably [6].

As the cancer grows, it creates a dense, scarred environment around itself called the stroma. This stroma is not just “filler”; it is a complex shield of fibrous tissue and non-cancerous cells that can block blood flow and prevent chemotherapy drugs from easily reaching the tumor [7][8]. This “scirrhous” (hard or scarred) nature is why PDAC often looks like an ill-defined mass on imaging and why it can be difficult to treat [5].

Your Multidisciplinary Care Team

Because this disease affects your digestion, nutrition, and overall strength, no single doctor can manage it alone. Current medical guidelines strongly recommend a multidisciplinary team (MDT)—a group of specialists who meet to review your scans and pathology to create a single, coordinated plan [9][10].

Specialist Primary Role in Your Care
Medical Oncologist Manages chemotherapy and other systemic treatments; coordinates clinical trials and molecular testing [11].
Pancreatic Surgeon Evaluates if the tumor can be safely removed (resectability) and performs the surgery if appropriate [12].
Gastroenterologist Uses specialized scopes (EUS or ERCP) to take biopsies or place stents (small tubes) to open blocked bile ducts [11][13].
Oncology Dietitian Manages weight loss and prescribes Pancreatic Enzyme Replacement Therapy (PERT) to help you digest food [14].
Radiologist Expertly interprets CT or MRI scans to determine exactly where the tumor touches major blood vessels [15].
Palliative Care Focuses on managing pain, fatigue, and nausea to improve your quality of life from the very beginning [16][17].

Immediate Orientation Steps

In the first days after diagnosis, your team will focus on three critical “pillars” to determine the best path forward:

  1. Anatomic Staging: Using high-quality “pancreas-protocol” CT scans to see if the tumor is resectable (removable by surgery), borderline resectable (touching vessels but potentially removable after shrinking it), or locally advanced (wrapping around major vessels) [11][18].
  2. Biological Assessment: Testing your blood for CA 19-9 (a tumor marker) and performing genetic testing [11]. Guidelines now recommend germline testing (checking for inherited mutations like BRCA1/2) for everyone diagnosed with PDAC, as this can sometimes change which chemotherapy works best [19][20]. Note: A biopsy is not always required before upfront surgery if a tumor is clearly resectable on imaging, but it is required before starting systemic therapy.
  3. Clinical Fitness: Assessing your performance status—your ability to perform daily activities. This helps your doctors decide if you are strong enough for intensive treatments or if supportive care should be the primary focus [16].

If you are experiencing significant weight loss, oily stools, or bloating, ask your team about starting pancreatic enzymes immediately. These supplements replace the enzymes your pancreas is no longer producing, which is essential for maintaining the strength needed for treatment [14][21].

Common questions in this guide

What kinds of exocrine pancreatic cancer are there?
Exocrine pancreatic cancer begins in the pancreas cells that make digestive enzymes. Most cases are pancreatic ductal adenocarcinoma, or PDAC, while acinar cell carcinoma and mixed tumors are less common; pathology and imaging help identify the subtype.
What do resectable, borderline resectable, and locally advanced mean?
These terms describe whether a tumor can be safely removed based mainly on its relationship to major blood vessels. Resectable tumors may be removed with surgery, borderline tumors may become removable after treatment, and locally advanced tumors involve vessels in a way that usually prevents surgery at first.
Is a biopsy always needed before pancreatic cancer treatment?
A biopsy is not always needed before surgery when high-quality imaging shows a clearly resectable tumor. Tissue confirmation is required before starting chemotherapy or other systemic treatment, so your team will recommend the safest sequence for your situation.
Why is inherited genetic testing recommended after a PDAC diagnosis?
Germline testing looks for inherited gene changes, including changes in BRCA1 or BRCA2. For people with PDAC, the result can help doctors choose treatment and can show whether relatives should discuss genetic testing with a professional.
Could pancreatic enzymes help with weight loss or oily stools?
Weight loss, oily stools, and bloating can happen when the pancreas is not supplying enough digestive enzymes. Pancreatic enzyme replacement therapy, or PERT, replaces those enzymes and may improve digestion and nutrition; ask your doctor or dietitian whether it is appropriate and how to take it.
Who should be involved in my pancreatic cancer care?
A multidisciplinary team may include a medical oncologist, pancreatic surgeon, gastroenterologist, radiologist, oncology dietitian, and palliative care clinician. These specialists review scans and pathology together, coordinate treatment, and address symptoms, nutrition, and quality of life; a nurse navigator may help organize visits.
What tests usually help doctors plan treatment after diagnosis?
Initial planning usually includes a pancreas-protocol CT scan, the CA 19-9 blood test, genetic testing, and an assessment of your ability to perform daily activities. The team combines these results with the tumor subtype and imaging findings to determine resectability and choose a treatment plan.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What specific subtype of pancreatic cancer do I have—PDAC, acinar cell carcinoma, or a mixed type?
  2. 2.Who are the members of my multidisciplinary care team, and has my case already been reviewed by a tumor board?
  3. 3.Based on my imaging, is my cancer classified as resectable, borderline resectable, or locally advanced?
  4. 4.Should I start Pancreatic Enzyme Replacement Therapy (PERT) immediately to help with weight and digestion?
  5. 5.What were the results of my germline genetic testing, and should my family members be tested?
  6. 6.Is there a nurse navigator who can help coordinate my appointments between the surgeon, oncologist, and dietitian?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (21)
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    Pancreatic Ductal Adenocarcinoma and Its Variants: Pearls and Perils.

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This page provides educational information about an exocrine pancreatic cancer diagnosis, staging, and care planning; it does not replace medical advice. Discuss your subtype, test results, and treatment options with your pancreatic cancer team.

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