What to do next when you’ve been diagnosed with pancreatic cancer

doctor delivering news of pancreatic cancer diagnosis stock image

A pancreatic cancer diagnosis can be overwhelming for patients, but there is a way forward. Though you might be feeling intimidated, it is important to remember that you are still in control of your cancer journey. This article contains a general guide for immediate steps you can take to help yourself feel like you’re back in the driver’s seat. Everyone’s story and process may be slightly different, but if you feel that you need guidance, we hope this points you in the right direction.

This may feel like a lot to remember, but feel free to bookmark or print this page out. We also recommend enlisting the help of friends and family to help you work on these steps.

Step One: Get to Know Pancreatic Cancer 

When facing cancer, it helps to understand what you are looking at. Cancer in general is a disease where abnormal cells in the body divide uncontrollably, which can hurt and kill body tissue. When you have pancreatic cancer, this means that those abnormal cells form in the pancreas. 

But what exactly does the pancreas do? According to the National Cancer Institute, the pancreas is a gland that is part of your digestive tract. It’s a six-inch gland that sits between the stomach and the spine, and its main job in the body is to help with the breakdown of nutrients. The pancreas makes juices that help us digest food and secretes hormones that help control blood sugar levels and store the energy the body gets from food. 

You may hear your doctor describe the location or type of cells within the pancreas when discussing your diagnosis. The pancreas itself is shaped like a sideways pear; the widest end of the pancreas is the head, the middle section is known as the body, and the narrowest end of the pancreas is called the tail. The National Cancer Institute states that the pancreas has two main types of cells, however, about 95% of the time, pancreatic cancer begins in the exocrine cells, which are the parts of the pancreas that make the digestive juices. 

You will also likely have received a stage number along with your diagnosis. Stages are simply markers of how much the cancer has grown and spread within the body. Likely, you will receive a stage number between one and four, with one being the beginning stage. 

Your doctor may also categorize your cancer by their treatment plan. There are five overarching categories of cancer. According to the National Cancer Institute, if you have resectable pancreatic cancer, the tumor(s) can be removed by surgery because they have not yet grown into important blood vessels. Borderline resectable pancreatic cancer, however, has grown into a major blood vessel or other important tissue or organs. Surgery is still an option, however, it is highly risky and may not completely remove the cancerous cells. 

If you have locally advanced pancreatic cancer, the cancerous cells have grown too close or into important blood vessels and/or lymph nodes (a small collection of cells that fight infections), so surgery is not currently a possibility – although in some cases, cancer can recede due to treatments which could then potentially make the tumor(s) resectable. Metastatic pancreatic cancer is a form of cancer that has grown into other organs and therefore cannot be removed by surgery. Lastly, recurrent pancreatic cancer is a form of cancer that has returned after treatment, whether it is in the pancreas or other parts of the body. 

Step Two: Learn the Treatment Options

When you are diagnosed with pancreatic cancer, you have several options for treatment, and you may receive many different types of treatment throughout your diagnosis. The terms neoadjuvant and adjuvant are both phrases that indicate when a person is receiving treatments. Neoadjuvant is the term used to talk about treatment before surgery and adjuvant is used for treatments after surgery. You will most likely receive both neoadjuvant and adjuvant treatments throughout your pancreatic cancer diagnosis. 

One of the most common treatments pancreatic cancer patients receive is surgery. The most widely used surgery for combatting pancreatic cancer is the Whipple procedure, which is intended to rid the patient of cancer by removing the head of the pancreas, gallbladder, a part of the stomach, a part of the small intestine, and the bile duct, according to the National Cancer Institute. Patients can qualify for the Whipple if their cancer has not yet spread outside the pancreas, so most patients who receive this treatment are likely resectable pancreatic cancer patients.  

A patient can also receive a distal pancreatectomy, in which the body and tail of the pancreas are removed. Patients can also undergo a total pancreatectomy, where the whole pancreas, a part of the stomach and small intestine, the common bile duct, gallbladder, spleen, and certain lymph nodes are removed. 

If the cancer has spread to the point where it cannot be removed, typically doctors suggest palliative surgeries, which are intended to relieve symptoms and improve the patient’s quality of life, according to the National Cancer Institute. The most common types of palliative surgeries for pancreatic cancer patients include biliary and gastric bypasses and endoscopic stent placement.

Patients can also go through chemotherapy and radiation therapy treatments. Many will do both at the same time. Chemotherapy is a cancer treatment that uses drugs to stop cancerous cell growth, either by killing the cells in the tumor or stopping them from dividing. Radiation therapy attacks the cancer cells with high-energy X-rays. You can also receive targeted therapies, which use drugs to attack specific cancerous genes, tissues, or proteins to prevent growth and stop cell division.    

For more information on different types of treatments that are available to pancreatic cancer patients, please visit the American Cancer Society’s web page on treatment options.  

Step Three: Do Some More Tests

Though you may be sick of tests, there are a few more you need to make sure you complete before proceeding with treatment. You should first get a genetic test done to identify if you have a genetic predisposition to cancer. Though there is no definitive genetic factor that contributes to pancreatic cancer, there is evidence that the BRCA-2 gene mutation does impact your chances of developing pancreatic cancer, and it is heritable, meaning that it can be passed down. For more information, please visit our blog on the gene mutation with Amy Moy.

You should also look into tumor testing. There are two types of tumor testing, but both work to assess the genetic makeup of the tumor in order to create a better treatment plan for the patient. Germline testing refers to a type of DNA test that looks for inherited gene mutations present from birth, in all body cells. Somatic testing is another type of DNA test that assesses genetic material from the tumor itself to see if there are any variants present within the cells. Both tests have their pros and cons, so please consult your doctor before moving forward with either testing option.

Ask your doctor how you can receive these tests and which ones would be most beneficial for you.  

Step Four: Get a Second Opinion 

Like most major life decisions, you’ll probably want a second opinion. According to a study published in the National Library of Medicine, pancreatic cancer patients should seek treatment within six weeks of diagnosis, so you do have some time to get another professional opinion. The American Cancer Society recommends that if you do decide to get a second opinion, be sure to bring a friend or family member to all doctor’s appointments who can write things down, especially if you are feeling anxious or worried. 

You can ask your current doctor for a recommendation of where to get a second opinion. Make sure before you go to get a second opinion that you have a copy of all important medical records. The American Cancer Society suggests that you have a personal copy and additional copies of the following: 

  • If you have had a biopsy, a copy of your pathology reports. 
  • If you had surgery, a copy of your operative report AND pathology reports 
  • If you were hospitalized due to your pancreatic cancer diagnosis, a copy of the discharge summary 
  • A summary of your doctor’s current treatment plan or the plan they gave you as an option
  • A list of all your medications, their doses, and when you take them

For more information about how to go about getting a second opinion, please go to the American Cancer Society’s article on the subject. 

Step Five: Seek out the Experts

Once you have a second opinion, you need to begin to assemble your healthcare team. Each patient’s team is a little different. The American Cancer Society states that many different medical professionals will be needed throughout your pancreatic cancer journey, and you should never be afraid to ask a question about their position, or qualifications. 

You will most likely want to seek out, or speak to doctors that focus on pancreatic cancer and its treatments, along with professionals who specialize in the pancreas and digestive tract. You also will likely seek out medical care for health problems related to pancreatic cancer, and enlist the help of a coordinator for patient care, such as a case manager, who manages all aspects of the patient’s care. 

You and your primary doctor will have to establish what type of care, and therefore what type of professionals you need to enlist to manage your treatments, together. 

Step Six: Develop a Personal Plan

Pancreatic cancer is more than just treatments and doctors’ appointments. The most important thing you can do for your health is to create a personal plan to help you manage your day-to-day life, expectations, and emotions. 

Enlisting the help of loved ones, friends, and family is the first step in the process of creating a personal plan. You are going to need others in your corner when going through a pancreatic cancer diagnosis. 

Once you have found a good support system, it’s time to think about how you are going to manage your goals, expectations, and priorities while going through treatment. The American Cancer Society suggests that you sit down with your support system and identify what are your top concerns at the moment. They suggest only picking two or three to work on at a time so you don’t get overwhelmed. These challenges can be anything: goals for your personal life, symptoms you want to treat, questions you need answered, etc. 

The next step is to brainstorm possible solutions for each challenge, working with your loved ones to come up with a plan that works for you. Afterward, think about additional concerns that might come up when tackling these challenges. This helps you manage your expectations and prepare you for the next steps. They offer the example of a patient wanting to get more active, but running into bad weather. Having contingency plans or other workarounds will help you feel more confident about achieving your goals. 

Lastly, once you have put into practice whatever solutions you find to your current challenges, go back and see what else you want to tackle. The American Cancer Society recommends revisiting your list about every couple of weeks to keep yourself moving. 

Lastly, it’s time to find ways to take care of your emotional health. Having a plan will help you feel at ease, but going through a pancreatic cancer diagnosis can present constant stress. The  National Cancer Institute suggests patients and their families can help alleviate their worries by trying to be as informed as possible about pancreatic cancer. If this idea is too overwhelming to consider, it might be helpful to focus on relaxing pastimes or hobbies. 

If you are experiencing severe emotional distress, seeking professional help is your best option for coping with your cancer diagnosis

If you or a loved one is experiencing feelings of helplessness, anxiety, sadness, anger, or any other distressing negative emotions, please contact your doctor to discuss options for care. You do not have to face this alone. If you or a loved one are facing a mental or emotional health crisis, you can dial 988 in the U.S. for emergency mental health support. But if you need counseling, we strongly recommend talking to your Primary Care Physician and getting a referral for mental health services. It can make a tremendous difference to face this difficult journey with the help of a professional.

How Project Purple Can Help

If you need financial assistance, Project Purple can help provide some relief through our Patient Financial Aid program. We assist with medical and everyday living expenses so patients can focus on the fight. 

For patients’ comfort and convenience, we also provide nutrition assistance in the form of delicious pre-cooked meals for patients and their families. This program is currently available to pancreatic cancer patients living in MA, NH, RI, CT, VT, ME, NY, NJ, or PA. You can click here to learn more about it.

We also have a podcast and blog that details the stories of other patients and survivors. No one should have to feel alone as they go through a pancreatic cancer diagnosis. Remember, you are worthy of help, compassion, and grace.

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