Diagnosed with Pancreatic Cancer:10 Tips on How to Get The Most From Your Doctor
by Dr. C.H. Weaver M.D. 8/2020
What is the pancreas and pancreatic cancer?
The pancreas is a gland located deep in the abdomen. It is surrounded by the stomach, small intestine, liver and spleen. The pancreas has two main functions. One function is called the exocrine function. This involves the production of enzymes that help in digestion. The second function of the pancreas is the endocrine function, which involves the production of hormones, including insulin and glucagon. Islet cells within the pancreas produce and secrete insulin and glucagon into the bloodstream. These hormones work together to maintain the proper level of sugar in the blood. When cells in the pancreas grow out of control, a tumor develops. In most cases of pancreatic cancer, the cells that line the pancreatic duct are involved. This type of pancreatic cancer is an exocrine tumor known as adenocarcinoma. A less common type of pancreatic tumor begins in the islet cells of the pancreas and is known as an endocrine or islet cell tumor.
What are the symptoms of pancreatic cancer?
The symptoms of pancreatic cancer are vague and may include back or abdominal pain, digestive issues or unexplained weight loss. These symptoms may also indicate a number of other conditions. The symptom that often triggers a pancreatic cancer diagnosis is jaundice, which is yellowing of the skin and eyes. Jaundice is caused by the buildup of a substance called bilirubin in the blood. In the case of pancreatic cancer, jaundice may occur if a tumor on the head of the pancreas obstructs the bile duct, causing this buildup of bilirubin.
Who is at risk for pancreatic cancer?
Recent research studies indicate that 30 percent of pancreatic cancer cases are linked to smoking and another 10 percent are said to have a hereditary (or familial) link. We also know that the incidence among African Americans is 50-90 percent higher than any other ethnic group in the United States. And, there is an even greater risk of pancreatic cancer among Ashkenazi Jews. Some of the other risk factors scientists are currently studying include: diabetes, chronic and hereditary pancreatitis (inflammation of the pancreas), obesity, physical activity, and diet.
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1) Choose Your Doctor Carefully
Surgeons, medical oncologists and radiation oncologists are the primary doctors involved with pancreatic cancer and often work in collaboration. Pick your primary oncologist carefully, rely on people you trust including nurses and other health care professionals who make help with recommendations. Make sure your doctor is someone you feel comfortable interacting with and shares your goals. It’s also important he/she has a specific interest in pancreatic cancer and has access to clinical trials.
2) Be Your Own Advocate
Inform yourself about multiple myeloma before you see your doctor. Make sure you understand your stage, range of treatment options, and role of precision medicine. All treatment is discussed based on stage and testing for precision medicines. You can begin to learn about pancreatic cancer here or receive a helpful newsletter.
An on line community can be a great resource to help find a doctor as well as to share information and learn about treatment choices with other individuals in your situation. CancerConnect will link you to pancreatic cancer patients being treated at leading cancer centers.
4) Bring written questions to your visit
A doctor’s visit is stressful, it is much easier to bring a list of written questions to ensure they all get answered and none are forgotten. Bring someone with you to take notes or consider using a recorder so you can listen and engage your doctor carefully. Being able to “replay the conversation is very helpful.
5) Be organized
It’s not unusual for patients to be treated by multiple doctors. To stay on top of the treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information.
6) Make sure you understand the treatment outcomes.
Your doctor should be able to tell you what you chance of survival/cure is if you elect to receive no treatment then explain how each proposed treatment improves upon that outcome. If you don’t know the expected outcome of no treatment vs the proposed treatment how can you possibly decide what to do?
7) Ask about the role of precision medicine
Unlike traditional chemotherapy, which attacks any cell in the body that is rapidly dividing, precision cancer medicine aims to target specific genetic alterations that allow cancer cells to grow. Pancreatic cancer often results from abnormal genes or gene regulation. The strategy of precision cancer medicine is to define abnormalities at the most basic genetic level. These abnormalities in the DNA are called genomic alterations and they are responsible for driving cancer cell growth. Once the abnormality is identified, genomic tests are created to measure the specific genes in pancreatic cancer that are abnormal or are not working properly. By identifying the genomic changes and knowing which genes are altered in a patient, cancer drugs that specifically attack that gene (or the later consequences of that gene) can be used to precisely target the cancer and avoid affecting healthy cells.
8) Ask about clinical trials
Ongoing research is being conducted to find new treatments for pancreatic cancer. When new treatments are discovered, they must be developed in humans. By learning about clinical trials you can identify opportunities that advance the treatment of pancreatic cancer and possibly benefit your personal prognosis.
9) Strongly consider a second opinion.
The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the best treatment. Getting a second opinion will help you understand ALL available treatment options, and provide reassurance to you and your family that you are receiving the most appropriate therapy.
10) Make sure you have an overall care coordinator
Everyone needs a single point of contact is responsible for your overall care. This can be your oncologist, your primary care doctor, or a specialized nurse navigator. Without a “quarterback” the potential for miscommunication, and frustration is considerable. Make sure you have one primary contact that is your advocate!
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