Intro to FAQ’s
Our FAQ’s are designed to give you a better understanding and grasp of what pancreatic cancer is and how to navigate the medical world associated with it. The following guide contains general questions and information from numerous sources but is not an exhaustive compilation of all the information out there. Please note that the information provided is condensed and a simple overview of what we found to be most helpful it is not completely comprehensive. Because cancer is not fully understood by the medical community, information about cancer is generally hotly contested and challenged. As such, the information presented is constantly changing as new research and treatments become available. The FAQ guide is intended to be used as a starting point in your search for information about pancreatic cancer and is not meant to be a prescription or be all end all list. Links are provided in the text to other websites that have much more information and we encourage you to seek extra information from those sites. All information presented is intended for educational purposes only and does not replace the advice of a medical professional.
1. What does my pancreas do and how does cancer affect its functioning?
The pancreas is a small glandular organ that lies between the stomach and the spine in the abdomen. Because of it’s location deep in the abdomen, tumors are not easily detected when a doctor checks other organs during routine physicals. Most people know little about their pancreas until there is a problem with it.
The anatomy of the pancreas is important when understanding the pancreas, because the two different cell types have very different functions . The Islets of Langerhans are the cells within the tissue of the pancreas (endocrine cells). The other type of cell is the Acinar cell (exocrine cells) connected to the pancreatic duct that runs from the pancreas into the small intestine. The pancreas serves two main purposes. The first is that the Islet of Langerhans cells secrete hormones that aid the body in managing blood sugar levels (the endocrine function). The second is that the Acinar cells produce enzymes that help to digest food (the exocrine function).
Cancer in the Pancreas
Cancer as a general term is used to describe the uncontrolled growth of a certain type of cell. The most common type of pancreatic cancer is called Adenocarcinoma. It accounts for more than 75% of all pancreatic cancer. Adenocarcinoma is the uncontrolled growth of pancreatic cells that create masses of glandular tissue. They can grow large enough to spread into other parts of the body through the liver or lymphatic system. Cancer in the pancreas may cause it to produce too much insulin causing symptoms of dizziness, weakness, muscles spasms, diarrhea or chills.
More info can be found at:
Johns Hopkins – Basic Overview
Download the NCI Booklet “What You Need To Know About Cancer of the Pancreas”
Download the University of Michigan Patient Handbook
2. How do doctors diagnose Pancreatic Cancer?
With all diagnosis, the medical professional is looking for clues to narrow down the list of what might be ailing the patient. In the case of Adenocarcinomas, doctors look for clusters of signs and symptoms before initiating further tests. The following is a list of the possible signs and symptoms that may be present in Adenocarcinoma:
- Jaundice (yellowing of the skin and/or eyes)
- Abdominal or Back Pain
- Weight loss and poor appetite
- Digestive problems
- Gallbladder enlargement
- Blood clots or fatty tissue abnormalities
- High blood sugar
Once the doctor sees the pattern in symptoms, they will order laboratory tests. Labs will often show high bilirubin levels (bile pigment found in the serum) and elevated liver function enzymes. The next step is to order a computed tomography (CT) scan of the pancreas and area around it in your abdomen. The CT scan shows the doctor a detailed cross-section of the pancreas and cancer. It can be used to diagnose, treat and stage the cancer. The final step of diagnosis is retrieving a piece of the actual cancerous tumor. This is usually done in a procedure called a biopsy. A biopsy is a procedure where a needle is inserted through the skin and into the effected area of the pancreas to retrieve a piece if the tumor. They then take it to a pathologist whose job it is to look under a microscope and diagnose what type of cancer it is.
More info about this topic can be found :
3. What is cancer staging and how to doctors determine my cancer’s stage?
Staging describes the severity of a person’s cancer based on the size and/or extent (reach) of the original (primary) tumor and whether or not cancer has spread in the body. Staging is important for several reasons. Staging helps the doctor plan the appropriate treatment, estimate a person’s prognosis, and identify clinical trials that may be a suitable treatment option for that patient.
The stages of pancreatic cancer are:
- Stage I. Cancer is confined to the pancreas.
- Stage II. Cancer has spread beyond the pancreas to nearby tissues and organs and may have spread to the lymph nodes.
- Stage III. Cancer has spread beyond the pancreas to the major blood vessels around the pancreas and may have spread to the lymph nodes.
- Stage IV. Cancer has spread to distant sites beyond the pancreas, such as the liver, lungs and the lining that surrounds your abdominal organs (peritoneum).
When staging the doctor looks at the diagnostic tests, labs and images described above. They piece together all of that information to form a complete picture of the extent of cancer in the body.
More info about this topic can be found :
4. What are the common treatment options for pancreatic cancer?
Surgical Removal of the Tumor
Most curative surgery is designed to treat cancers at the head of the pancreas. Because these cancers are near the bile duct, some of them cause jaundice and are found early enough to be removed. Pancreaticoduodenectomy (Whipple procedure) is the most common operation to remove a cancer of the exocrine pancreas and it is also sometimes used to treat cancers of the endocrine pancreas. It removes the head of the pancreas and sometimes the body of the pancreas as well. Part of the stomach, small intestine, and lymph nodes near the pancreas are also removed. The gallbladder and part of the common bile duct are removed and the remaining bile duct is attached to the small intestine so that bile from the liver can continue to enter the small intestine. This procedure requires a very high skill level of the surgeon. Prognosis for patients will be much better if they use a surgeon who has done many of these procedures and it is performed at a hospital where the Whipple procedure is a common surgery.
Radiation
Radiation therapy uses high-energy rays directed at a tumor. This therapy damages the cancer cells and stops them from growing and dividing. It may be used before or after surgery to shrink the tumor alone or with chemotherapy for patients with inoperable tumors. Side effects can include: fatigue, skin becomes red, tender, itchy, nausea, vomiting, diarrhea, digestion problems. Usually subside when treatment ceases.
Chemotherapy
Chemotherapy (chemo) uses anti-cancer drugs injected into a vein or given by mouth. These drugs enter the bloodstream and reach all areas of the body, making this treatment potentially useful for cancers that have metastasized (spread) beyond the organ they started in. Common short-term side effects might include nausea, vomiting, loss of appetite, hair loss, mouth sores and diarrhea.
For some patients whose tumors cannot be removed surgically, chemotherapy and radiation therapy are sometimes given together to reduce the size of the tumor. The response of patients to treatment is frequently monitored using CAT scans or blood markers. However, for most patients whose tumors cannot be removed by surgery, chemotherapy alone is the recommended treatment.
End Stage Treatment
For patients with advanced pancreatic cancer who cannot have their tumors removed surgically, the focus of treatment involves symptom prevention and control. Surgery can be used to relieve intestinal blockage or to perform nerve blocks for pain. Radiation therapy can be used to relieve painful disease sites. Chemotherapy can be used to reduce the rate of tumor growth and to prolong survival.
More info about this topic can be found :
5. What kind of alternative and adjunct treatments are available?
Some complementary health approaches, such as acupuncture, massage therapy, mindfulness-based stress reduction, and yoga, may help people manage cancer symptoms or the side effects of treatment. However, some approaches may interfere with conventional cancer treatment or have other risks. People who have been diagnosed with cancer should consult their health care providers before using any complementary health approach.
- There is substantial evidence that acupuncture can help to manage treatment-related nausea and vomiting in cancer patients. There is not enough evidence to judge whether acupuncture is effective in relieving cancer pain or other symptoms such as treatment-related hot flashes. Complications from acupuncture are rare, as long as the acupuncturist uses sterile needles and proper procedures. Chemotherapy and radiation therapy weaken the body’s immune system, so it is especially important for acupuncturists to follow strict clean-needle procedures when treating cancer patients.
- Recent studies suggest that the herb ginger may help to control nausea related to cancer chemotherapy when used in addition to conventional anti-nausea medication.
- Studies suggest that massage therapy may help to relieve symptoms experienced by people with cancer, such as pain, nausea, anxiety, and depression. However, investigators have been unable to reach definite conclusions about the effects of massage therapy because of the limited amount of rigorous research in this field. People with cancer should consult their health care providers before having massage therapy to find out if any special precautions are needed. The massage therapist should not use deep or intense pressure without the health care providers’ approval and may need to avoid certain sites, such as areas directly over a tumor or those where the skin is sensitive following radiation therapy.
- There is evidence that mindfulness-based stress reduction, a type of meditation training, can help cancer patients relieve anxiety, stress, fatigue, and general mood and sleep disturbances, thus improving their quality of life. Most participants in mindfulness studies have been patients with early-stage cancer, primarily breast cancer, so the evidence favoring mindfulness training is strongest for this group of patients.
- Preliminary evidence indicates that yoga may help to improve anxiety, depression, distress, and stress in people with cancer. It also may help to lessen fatigue in breast cancer patients and survivors. However, only a small number of yoga studies in cancer patients have been completed, and some of the research has not been of the highest quality. Because yoga involves physical activities, it is important for people with cancer to talk with their health care providers in advance to find out whether any aspects of yoga might be unsafe for them.
- Various studies suggest possible benefits of hypnosis, relaxation therapies, and biofeedback to help patients manage cancer symptoms and treatment side effects.
- A 2008 review of the research literature on herbal supplements and cancer concluded that although several herbs have shown promise for managing side effects and symptoms such as nausea and vomiting, pain, fatigue, and insomnia, the scientific evidence is limited, and many clinical trials have not been well designed. Use of herbs for managing symptoms also raises concerns about potential negative interactions with conventional cancer treatments.
More info about this topic can be found :
National Center for Complementary and Alternative Medicine
Office of Cancer Complementary and Alternative Medicine
6. What are the other types of Pancratic Cancer?
Islet Cell Tumors
Tumors of the endocrine pancreas are uncommon. As a group, they are known as pancreatic neuroendocrine tumors (NETs), or sometimes as islet cell tumors. Islet cell tumors can be benign or malignant. Benign tumors are called pancreatic neuroendocrine tumors, while malignant tumors are called pancreatic neuroendocrine cancers or carcinomas. Malignant and benign tumors can look very similar under the microscope, so it isn’t always clear at the time of diagnosis whether or not a NET is cancer. Sometimes the diagnosis only becomes clear when the tumor has spread outside of the pancreas. Pancreatic neuroendocrine cancers make up less than 4% of all pancreatic cancers diagnosed. Treatment and prognosis depend on the specific tumor type and the stage (extent) of the tumor but the prognosis is generally better than that of pancreatic exocrine cancers. The most common types of pancreatic endocrine tumors are gastrinomas and insulinomas. The other types occur very rarely.
More info about this topic can be found :
7. What are clinical trials and should I participate?
New medications and treatments for pancreatic cancer must be shown to be safe and effective before doctors can prescribe them to patients. Through pancreatic cancer clinical trials, researchers test the effects of new drugs on a group of volunteers with pancreatic cancer. Following a strict protocol and using carefully controlled conditions, researchers evaluate the investigational drugs under development and measure the ability of the new drug to treat pancreatic cancer, its safety, and any possible side effects.
Some patients with pancreatic cancer are reluctant to take part in clinical trials for fear of getting no treatment at all. However, many trials offer patients the most effective therapy available for the condition or treatments that are being evaluated for future use. The drugs being tested may be even more effective than the current pancreatic cancer treatment. The specifics of a particular clinical trial should be discussed with your doctor.
The following web sites offer information and services to help you find a pancreatic cancer clinical trial that is right for you.
This web site, developed by the nonprofit Coalition of Cancer Cooperative Groups, is an unbiased cancer clinical trial matching and navigation service enabling patients to search for cancer trials based on disease and location.
This web site lists industry-sponsored clinical trials that are actively recruiting patients.
This web site offers up-to-date information for locating federally and privately supported clinical trials for cancer.
8. How do I find a doctor that is right for me?
How to Find a Doctor/Surgeon
When choosing a doctor it is important to make sure you are informed. Doctors that specialize in the treatment of cancer are called oncologists. There are many ways to find an oncologist to fit your needs. If you are covered by insurance you may want to ask your primary care physician to refer you to a pancreatic cancer specialist. They will know who is in the network and who has the specialty to help you.
Another way to locate a physician is to look online. The American Medical Association (AMA) DoctorFinder database provides basic information on licensed physicians in the United States. Users can search for physicians by name or by medical specialty. The American Society of Clinical Oncology (ASCO) provides an online list of doctors who are members of ASCO. The member database has the names and affiliations of nearly 30,000 oncologists worldwide. It can be searched by doctor’s name, institution, location, oncology specialty, and/or type of board certification.
After you have found an oncologist, they may suggest surgery as an option for treatment. You can find the surgeon in much the same way as you found the doctor, either by referral or by looking them up on the internet.
The American College of Surgeons (ACS) membership database is an online list of surgeons who are members of the ACS. The list can be searched by doctor’s name, geographic location, or medical specialty. The ACS can also be contacted by telephone at 1–800–621–4111.
How to Choose the Right One for You
When choosing a physician or surgeon it is important that they have the qualities you need and want in a caregiver. This is a big decision and you should meet with multiple doctors/surgeons until you find one that is right for you. It is important to ask yourself:
- Does the doctor have the education, training, and experience to meet my needs?
- Does the doctor use the hospital that I have chosen?
- Does the doctor listen to me and treat me with respect?
- Does the doctor explain things clearly and encourage me to ask questions?
- What are the doctor’s office hours?
- Who covers for the doctor when he or she is unavailable? Will that person have access to my medical records?
- How long does it take to get an appointment with the doctor?
- Is the surgeon board certified?
- Has the surgeon been evaluated by a national professional association of surgeons, such as the ACS?
- At which treatment facility or facilities does the surgeon practice?
- How often does the surgeon perform the type of surgery I need?
- How many of these procedures has the surgeon performed? What was the success rate?
The Second Opinion
Many patients find a perfect oncologist receive a diagnosis and treatment plan, and then are surprised to hear the oncologist recommend getting a second opinion. The second opinion in the world of oncology is an essential part of care. Most oncologists will be able to refer you to another doctor for the second opinion. They do this to get more input on the diagnosis and to include more ideas on treatment options. The doctor who gives the second opinion can confirm or suggest modifications to your doctor’s proposed treatment plan, provide reassurance that you have explored all of your options, and answer any questions you may have.
9. How do I find a treatment facility that is right for me?
Choosing a treatment facility is another important consideration for getting the best medical care possible. Although you may not be able to choose which hospital treats you in an emergency, you can choose a facility for scheduled and ongoing care. If you have already found a doctor for your cancer treatment, you may need to choose a facility based on where your doctor practices. Your doctor may be able to recommend a facility that provides quality care to meet your needs. You may wish to ask the following questions when considering a treatment facility:
- Has the facility had experience and success in treating my condition?
- Has the facility been rated by state, consumer, or other groups for its quality of care?
- How does the facility check on and work to improve its quality of care?
- Has the facility been approved by a nationally recognized accrediting body, such as the ACS Commission on Cancer and/or The Joint Commission?
- Does the facility explain patients’ rights and responsibilities? Are copies of this information available to patients?
- Does the treatment facility offer support services, such as social workers and resources, to help me find financial assistance if I need it?
- Is the facility conveniently located?
10. What are the common symptoms and how do I treat them?
Pain
Pain in the abdomen or back can be a major problem for people with pancreatic cancer, especially the exocrine type. Treatment is available to help relieve this pain. If you are having any pain, please be sure to tell your doctor or nurse right away. Pain is easier to treat if the treatment is started when you first have it. You and your doctor or nurse can talk about the best ways to treat your pain. A pain specialist can also help develop a treatment plan.
There are proven ways to relieve pain from pancreatic cancer. For most patients, treatment with morphine or other similar drugs (opiates) will reduce the pain considerably. Many people are reluctant to take these drugs because they fear becoming addicted, but studies have shown that the risk of this is low if the patient takes the drug for pain as directed by the doctor.
Pain medicines work best when they are given regularly on a schedule. They do not work as well if they are only used when the pain becomes severe. Several long-acting forms of morphine and other opioid agents can be taken in pill form and only need be given once or twice a day. There is even a long acting form of the drug fentanyl that is applied as a patch every 3 days.
Gastrointestinal Symptoms
Nausea and Vomiting: It is very common to feel nauseous, either because of the cancer itself or from treatment. Causes of nausea and sickness are: the tumor blocking the bile duct or pressing on the duodenum (the top part of the small intestines)is obstructing digestion, the tumor is causing inflammation in the pancreas or jaundice, the cancer is affecting how well the liver works, and chemotherapy or other drugs. The first thing to do is to talk to your specialist nurse or doctor about your symptoms to identify the cause(s) of your nausea in order to find the most appropriate drug treatment for you. They may also suggest non-drug alternatives you can try to relieve your symptoms. The key aim is to prevent you feeling nauseous and help you to continue to feel well. You might find it useful to keep a diary of when you feel nauseous, such as before or after chemotherapy or when you eat. This can also help you to see if any anti-sickness drugs are working.
Diarrhea: Diarrhea results when the nutrients in food are not absorbed properly. When this occurs, stool can become loose, watery, oily and foul-smelling. Pancreatic enzymes are responsible for digesting fatty foods. If a tumor blocks the pancreatic duct, insufficient pancreatic juices in the intestines can lead to poor absorption and diarrhea, as the undigested food passes quickly through the digestive tract. If this happens, stool may float due to the higher fat content, appear bulky, greasy, and unusually pale. To treat and prevent severe diarrhea, avoid caffeine, alcohol, dairy, fat, fiber, orange juice, prune juice, and spicy foods, avoid laxatives and stool softeners, eat small, frequent meals, and ask your doctor which foods are best to eat when you have diarrhea, eat foods that are easy for the stomach to digest including bananas, rice, applesauce, and toast, drink plenty of water and other clear liquids to prevent dehydration, ask your doctor about changing the schedule or dose of chemotherapy if the diarrhea is caused by the treatment and is severe, and ask your doctor about antidiarrheal medications. Imodium is often used to treat diarrhea caused by some types of chemotherapy.
Nutrition and Weight Loss
Weight loss can be a common problem for patients with pancreatic cancer. You may see your appetite decrease or feel bloated or ‘gassy’ after eating. It may be hard to eat normally because foods taste different to you. You may have times when you feel nauseated, or have constipation or diarrhea. These are some common reasons that you may not feel hungry and lose weight. Cancer can also cause changes in your body that affect your metabolism and will contribute to weight loss. Many patients do not make enough of the digestive juices needed to digest food properly; this can cause diarrhea and additional weight loss. For all of these reasons, weight loss is common in patients with pancreatic cancer. Weight loss can be a common problem for patients with pancreatic cancer. The overall goal during treatment should be to keep a stable weight. Weight will be monitored closely throughout your treatment. Talk to your medical team about your symptoms. There are medications available to reduce or treat any pain, nausea, constipation or digestion problems you may be experiencing. Your doctor can order these for you. Also, nutrition specialists are available that can offer suggestions and guidance, and will prepare a dietary plan during treatment.
Fatigue
The fatigue that comes with cancer is different from the fatigue of daily life. Everyday, normal fatigue usually doesn’t last long and most often gets better with rest. Cancer-related fatigue is worse and it causes more distress. It’s not the tired feeling people remember having before they had cancer. Some people describe it as feeling weak, listless, drained, or “washed out.” Some may feel too tired to eat, walk to the bathroom, or even use the TV remote. It can be hard to think, as well as move your body. Rest does not make it go away, and just a little activity can make you feel exhausted. For some people, this kind of fatigue can cause even more distress than pain, nausea, vomiting, or depression. To combat fatigue, conserve your energy, distract yourself from focusing on the fatigue, engage in relaxing activities, reduce your stress, exercise, seek nutrition counseling, improve sleep, and ask about medicine.
11. Where can I find support?
People who take part in support groups believe that they can live healthier, happier lives if they spend time relating to others. They say that when they have emotional support, it is easier to deal with their health and social problems. Some claim that the bonds formed between members of support groups help them feel stronger. They further claim that sharing feelings and experiences within support groups can reduce stress, fear, and anxiety and help to promote healing. Evidence suggests that support groups can improve quality of life for people with cancer.
Below is a list of support group finders, websites, and online chat forums:
12. Where can I find information on hospice and end of life issues?
Hospice care focuses on all aspects of a patient’s life and well-being: physical, social, emotional, and spiritual. There is no age restriction; anyone in the late stages of life is eligible for hospice services. While specific hospice services around the world differ in the amenities they provide, most include a hospice interdisciplinary team, or IDT, that includes the patient’s physician, a hospice doctor, a case manager, registered nurses and licensed practical nurses, a counselor, a dietician, therapist, pharmacologist, social workers, a minister, and various trained volunteers.
More info about this topic can be found :
National Cancer Institute: Hospice Care
Hospice Association of America
National Hospice and Palliative Care Organization
International Association for Hospice and Palliative Care
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