Cancer of the Pancreas Screening Study (CAPS)

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Cancer of the Pancreas Screening Study (CAPS)

Early detection offers one of the best hopes for a cure. Unfortunately, there are no proven effective early detection tests currently available. We have therefore assembled a team at Hopkins whose focus is to develop and test new approaches to the early detection of pancreatic cancer and its precursors.

Pancreatic Cancer Early Detection team at Johns Hopkins brings together experts in gastroenterology, pathology, radiology, surgery and genetics using advances in genetic research and diagnostic technologies to create a multidisciplinary early detection research program. Much of the team's efforts are focused on individuals and families who have an elevated lifetime risk of developing pancreatic cancer.

Pancreas cancer is an aggressive disease that is difficult to treat, often because it is not detected until it has reached an advanced stage or spread throughout the body. Early detection screening aims to catch the early precancerous lesions and small pancreatic cancers that often present without symptoms with the goal of our research is to develop new approaches to detect and treat the disease when it is operable and before it has spread systemically.

Pancreatic cancer screening, mostly as a part of an ongoing research study, is offered for individuals who have a high risk of developing pancreatic cancer based on their family history, genetic predispositions and certain diagnoses.

Pancreas Surveillance

Pancreatic cancer screening is not appropriate for everyone, individuals without risk factors should not consider pancreas surveillance. However, participating in a research screening program may be appropriate for people who have certain risk factors, including family history and certain genetic syndromes that increase susceptibility to pancreas cancer. Surveillance is may also be clinically recommended in other instances such as new diagnoses of a pancreas cyst or lesion. If you are looking to learn more about following pancreatic cysts please follow the link to our Multidisciplinary Pancreatic Cyst Program.

At this point no early detection test has been shown to decrease incidence of pancreatic cancer related deaths. However, many experts believe that individuals should undergo regular early detection tests to survey their pancreas when they have a relative risk of developing pancreatic cancer greater than fivefold of the risk in the general population. Regular surveillance uses medical imaging and endoscopic techniques to detect precancerous lesions or early pancreatic cancer that can be surgically removed.

Our physicians work with each person considering pancreatic cancer screening to evaluate your risk factors and develop a screening plan appropriate to you. The list below can help you identify if you would benefit from a clinical evaluation.

Family History ▼

Pancreatic cancers sometimes run in families, patients who have a family history of pancreatic cancer are more likely to develop this disease. If you have a family history of pancreatic cancer you should consider early detection tests based on the following guidelines if:

You have more than one first degree relative (parents, siblings or children) who have developed pancreatic cancer.
You have first degree relatives (parents, siblings or children) who developed pancreas cancer before the age of 50.
One of your first degree relatives has developed pancreatic cancer and at least one of your second or third degree relatives has developed pancreatic cancer (i.e. One parent and one uncle, or a sibling and a cousin).
More than two of your second degree relatives (aunts, uncles, nieces and nephews) have developed pancreatic cancer.
You have three or more relatives of any relation who have developed pancreatic cancer

Genetic Variations ▼

People who have a history of any of the following genetic variations and syndromes should consider pancreas cancer screening in a research setting.

Individuals who have the BRCA1, BRCA2 or PALB2 mutation and have at least one relative affected by pancreatic cancer may wish to consider pancreas screening. These mutations are associated with a history of breast and/or ovarian cancer and are more common amongst people of Ashkenazi Jewish descent.
People with Peutz-Jeghers syndrome associated with STK11 gene mutations may wish to begin pancreas cancer screening at age 40 regardless of their family history.
Familial Atypical Mole Melanoma (FAMMM) occurs in families with histories of melanoma. This is associated with inherited mutations in the CDKN2A/p16 gene. Individuals with FAMMM and a mutation in CDKN2A who have at least one relative affected by pancreatic cancer may wish to consider pancreas cancer screening.
Individuals who have hereditary pancreatitis are at a higher risk for developing pancreatic cancer. Hereditary pancreatitis is associated with episodes of pancreatitis starting at an early age. The chronic inflammation caused by pancreatitis and mutations in the PRSS1 gene associated with hereditary pancreatitis are both risk factors that increase pancreatic cancer risk. Individuals with hereditary pancreatitis and known PRSS1 should be screened for pancreatic cancer starting at age 40.
Hereditary nonpolyposis colorectal cancer syndrome (HNPCC) or Lynch syndrome is a genetic syndrome affecting mismatch repair genes that increases the risk for colon, endometrial, stomach, ovarian and pancreas cancers. Individuals with Lynch syndrome who have at least one family member affected by pancreatic cancer may wish to consider screening for pancreatic cancer.
Ataxia-telangiectasia syndrome caused by mutations in ATM gene who have at least one should be screened for pancreatic cancer (ATM) mutation carriers who have at least one family member affected by pancreas cancer may wish to consider screening

What kind of pancreas screening tests are available? ▼

Screening is usually performed in a research setting. This allows the team to define the best techniques for screening, and who would benefit most from screening. Most commonly it involves a combination of EUS, MRI and CT scans at regular intervals.

At The Johns Hopkins Hospital you will meet with one of our physicians before beginning screening to discuss your risk and develop a plan appropriate to you. Our team of radiologists, gastroenterologists, endoscopists, surgeons, pathologists and genetic counselors work together to create screening plans and make recommendations to individuals and family members. Genetic testing and genetic counseling are an optional part of pancreatic screening that may help some individuals understand their risk factors.

EUS - considered one of the most accurate tools for detection of small lesions that are not visible by CT scan. During an Endoscopic Ultrasound (EUS), is procedure a doctor passes an endoscope with an ultrasound probe attached to it through the patient's mouth and into the stomach where we are able to scan the pancreas. EUS also does not involve ionizing radiation, it produces images of the pancreas through the stomach using ultrasound waves bounce off internal organs.
Fine needle aspirates can also be used in EUS to make certain diagnoses.
MRI - Imaging that uses strong magnetic fields to provide detailed pictures of internal organs.
Secretin, a synthetic version of a hormone that stimulates your pancreas to produce juice is sometimes used in MRI, both to evaluate the function of your pancreas and to collect pancreatic juice secretions that may have diagnostic or research purposes.
CT - uses a combination of x-rays and computer technology to produce horizontal images, often called slices, of the body. Computed Tomography (CT) scans of the pancreas provide detailed images of the organ. You may want to ask your doctor about the amount of radiation used in a CT scan and the risks related to your particular situations.

Scheduling Pancreas Surveillance

Our team of experts is dedicated to helping patients navigate their questions about pancreas surveillance. Drs. Goggins and Canto are widely recognized as authorities in the field of pancreatic cancer screening, and have been working together to evaluate the utility of pancreatic screening for approximately 15 years. If you would like to schedule an appointment to participate in our research, and to begin pancreas screening please contact Dr. Michael Goggins office at 410-502-5612 or Dr. Marcia Canto at 410-614-5388 for information.

Research

The Pancreatic Cancer Early Detection Lab at the Sol Goldman Pancreatic Cancer Research center focuses on the primary goal of discovering the next breakthroughs in pancreatic cancer early detection. This lab puts together many techniques with a focus on genetics and evaluating the effectiveness of emerging detection methods including the utility of biomarkers in diagnosing early pancreatic cancer. We study both the genes that increase pancreatic cancer risk and the genetic changes that take place in pancreas tumors and precancerous lesions. Our team looks at different aspects of changes in pancreatic cancer, such as the methylation of certain genes and the activity of enzymes like telomerase that are involved in the development of tumors to understand what genetic signatures or proteins could be used to identify early pancreatic cancer.

Participating in the CAPS Research Study

Cancer of the Pancreas Screening (CAPS):

The Cancer of the Pancreas Screening Study (CAPS) is a research program developed to evaluate the effectiveness of early detection screening in high risk individuals of pancreatic cancer, and to progress the discovery of new biomarkers to improve early detection. Our research team can help you understand more about participating in our research if you are interested.

The lead study coordinator and research nurse, Hilary Cosby (R.N., C.G.R.N.) assists with scheduling of pancreas screening including gastroenterology consultation, scheduling of EUS, MRI, CT and incorporating optional genetic counseling into your visits.

To answer questions or schedule participation in the CAPS Research Study please contact Hilary Cosby at 410-502-2893.

An inherited genetic variation in DNA that you are born with

Third Degree Relatives - First cousins, great-aunts and uncles

Second Degree Relatives - Aunts, uncles, grandparents, nieces and nephews

First Degree relatives - Blood relatives in your immediate family: parents, children, and siblings

Also known as a pancreatoduodenectomy, the Whipple procedure is the surgery typically performed to remove cancers of the head of the pancreas (the part of the pancreas on the right side of your body). It typically involves the surgical removal of the head of the pancreas, a portion of the duodenum and a portion of the bile ducts.

This is an experimental type of treatment. It is a medication made of killed or weakened cells, organisms or manufactured materials, which is used to boost the body's immune system. Ideally, this will allow the body to fight and kill the cancer cells more effectively. Vaccines include whole killed cancer cells or specific proteins from the cancer.

Unable to be surgically removed. This usually means that the cancer has spread beyond the areas that can be removed surgically.

The part of the pancreas that bends backwards, hooking around two very important blood vessels, the superior mesenteric artery and vein. The word "uncinate" comes from the word uncus which means "hook."

A painless procedure in which high frequency sound waves are used to generate pictures of the inside of the body. An ultrasound devise can be placed at the end of a scope, and the scope inserted into the duodenum, providing very detailed pictures of the pancreas. This is called "endoscopic ultrasound."

This term simply refers to a "mass" or neoplasm. For example, a collection of pus is a tumor. This is a general term that can refer to either benign or malignant growths.

A clot within the blood vessels. It may occlude (block) the vessel or may be attached to the wall of the vessel without blocking the blood flow.

An inflammation of the veins accompanied by thrombus formation. It is sometimes referred to as Trousseau's sign.

The long thin part of gland in the left part of abdomen, near the spleen.

A slender hollow tube inserted into the body to relieve a blockage. For example, pancreas cancers often grow into the bile duct as the bile duct passes through the pancreas. This can block the flow of bile and cause the patient to become jaundiced. In these cases the flow of bile can be reestablished by placing a stent into the bile duct, through the area of blockage.

Excessive amounts of fat in the stool. Sometimes this can appear as an oil slick on top of the toilet water after the patient has had a bowel movement. It can be a sign that the pancreas isn't functioning well.

A classification system that is used to describe the extent of disease. Clinicians use it to predict the likely survival of a patient.

A flat, scale-like cell. Although most pancreatic cancers look like ducts under the microscope, a small fraction look like squamous cells.

A maroon colored, rounded organ in the upper left part of the abdomen, near the tail of the pancreas. This organ is part of your immune system and filters the lymph and blood in your body. It is often removed during the distal pancreatectomy surgical procedure.

A long (20 foot) tube that stretches from the stomach to the large intestine. It helps absorb nutrients from food as the food is transported to the large intestine. There are three sections: the duodenum, the jejunum and the ileum. Due to its proximity to the pancreas, the duodenum is the section of the small intestine most often affected by pancreatic cancer.

An infection of the blood. This can be life-threatening and is often treated with antibiotics.

A malignant tumor that looks like connective tissues (bone, cartilage, muscle)under the microscope. Sarcomas are extremely rare in the pancreas.

Able to be removed surgically. Usually this means that the cancer is confined to areas typically removed surgically.

The use of high-energy waves similar to x-rays to treat a cancer. Radiation therapy is usually used to treat a local area of disease and often is given in combination with chemotherapy.

A thick ring of muscle (a sphincter) between the stomach and duodenum. This sphincter helps control the release of the stomach contents into the small intestine.

A forecast for the probable outcome of a disease based on the experience of large numbers of other patients with similar stage disease. Importantly, making a prognosis is not an exact science. Some patients with poor prognosis beat the odds and live longer than anyone would have predicted. Steve Dunn's Cancer Guide has an excellent article on statistics and prognoses and stories of other cancer patients.

A cancer in the organ where it started in. A primary cancer of the pancreas is one that started in the pancreas as opposed to a cancer that started somewhere else and only later spread to the pancreas.

The biochemical study of plants; concerned with the identification, biosynthesis, metabolism of chemical constituents of plants; especially in regards to natural products.

Around the ampulla of Vater in the duodenum. The peri-ampullary region is comprised of 4 structures; the ampulla, the duodenum, the bile duct and the head of the pancreas. It is sometimes difficult to tell which structure a tumor originated in. In such cases the diagnosis will be a peri-ampullary tumor.

A medical doctor specially trained to study disease processes. Pathologists make the microscopic diagnosis that is used to establish the diagnosis of cancer.

A term used to describe certain tumors which grow in finger-like projections. Pathologists use this term to describe some precancerous lesions in the pancreas (intraductal papillary mucinous neoplasm).

Any treatment that reduces the severity of a disease or its symptoms. Palliative care is often a part of the treatment plan for patients with advanced pancreatic cancer.

An oblong organ located between the stomach and the spine. The pancreas secretes enzymes needed for the digestion of food and it produces hormones such as insulin and glucagon which help control blood sugar.

A surgically created opening in an organ that can also be referred to as an anastamosis. Sometimes when surgeons remove a segment of bowel they create an ostomy to allow for the bowel contents to exit the body.

A medical doctor who specializes in the treatment of tumors. Oncologists often treat patients with pancreatic cancer with chemotherapy.

An abnormal new growth of tissue that grows more rapidly than normal cells and will continue to grow if not treated. These growths will compete with normal cells for nutrients. This is a general term that can refer to benign or malignant growths. It is a synonym for the word tumor.

Chemotherapy and radiation therapy that is given to patients before surgery. Some centers feel that the use of neoadjuvant therapy improves local and regional control of disease and that it may make more patients surgical candidates.

The thin section of the pancreas between the head and the body of the gland.

An alteration in the DNA of a cell. Think of it as a typographically error in the DNA code.

A cancer that has spread from one organ to another. Pancreas cancer most frequently metastasizes to the liver. In general, cancers that have metastasized are generally not treated surgically, but instead are treated with chemotherapy and/or radiation therapy.

A cancer that has the potential of invading nearby tissues, spreading to other organs (metastasizing) and possibly leading to the patient's death.

A painless method for visualizing internal organs. A tube-like machine with a powerful magnet generates images of the inside of the body. It does not involve the use of Xrays.

Normal, round, raisin to grape-sized collections of lymphocytes (white blood cells) found throughout the body. Lymph nodes are connected to each other by lymphatic vessels. They normally help fight infection, but also are one of the first sites to which cancers spread. In general, the spread of cancer to lymph nodes portends a worse prognosis for the patient. There are exceptions to this.

A primary pancreatic cancer that has spread to regional lymph nodes and/or resectable (removable) tissues. Removable tissues include some lymph nodes and parts of the duodenum and stomach that are routinely removed in some surgical treatments for pancreatic cancer.

The largest organ in the body, located in the right upper part of the abdomen. It performs many life-maintaining functions including the production of bile. The liver detoxifies the blood of drugs, alcohol and other harmful chemicals. It processes nutrients absorbed by the intestine and stores essential nutrients, vitamins and minerals. Bilirubin is a chemical produced when old or damaged blood cells breakdown. The liver chemically process the bilirubin so that it can dissolve in water and be excreted through the urine. When this process is disrupted, jaundice can develop.

A technique that surgeons can use to visualize and even biopsy (take tissue samples of) organs inside of the abdomen without making large incisions. Very small incisions are made in the belly and small tubes (called trocars) are then inserted. Gas is pumped in through one of the tubes to create enough space to work in. The surgeon inserts a small camera through one of the tubes and examines the lining and contents of the abdominal cavity by looking at the projected image on the television screen. With specially designed laparascopic instruments, biopsies and fluid samples can be taken for examination. Some surgeons feel that this technique can help "stage" a patient less invasively than with open surgery.

Yellowing of the skin or yellowing of the whites of the eyes caused by the accumulation of bile pigments (usually due to an obstruction of the bile ducts).

A hormone produced by the endocrine cells of the islets of Langerhans cells of the pancreas. Insulin acts to lower blood sugar levels.

A term used to indicate that cancerous cells are present in the duct but have not yet invaded deeper tissues.

The widest part of the pancreas. It is found in the right part of abdomen, nestled in the curve of the duodenum, which forms an impression in the side of the pancreas.

A hormone produced by the endocrine (islets of Langerhans) cells of the pancreas. When blood sugar levels are low, glucagon acts to raise blood sugar levels.

Gemzar is the trade name for the chemotherapy drug gemcitabine. It is frequently used to treat pancreatic cancer. It has been shown, in controlled clinical trials, to improve quality of life.

A green pear-shaped organ located on the right side of the abdomen just under the liver. The gallbladder is essentially a reservoir for holding bile.

A chemotherapeutic drug commonly used to treat pancreatic cancer.

The exocrine cells (acinar cells) of the pancreas produce and transport chemicals that will exit the body through the digestive system.

The chemicals that the exocrine cells produce are called enzymes. They are secreted in the duodenum where they assist in the digestion of food.

A test used to visualize and examine the pancreas and bile ducts. A tube is inserted through a patient's nose (or throat), down through the esophagus and stomach then into the small intestine (duodenum). There, a small probe is inserted into the ampulla of Vater. A dye is injected through the probe and into the pancreatic and bile ducts. X-rays are then taken to visualize the pancreatic and bile ducts. these ducts can be seen as white structures (this is because the injected dye is opaque). Because pancreas cancers often block the pancreatic and/or bile ducts, this technique can be useful in establishing a diagnosis of pancreas cancer.

A chemical that causes a reaction in other substances, in this case as a part of the digestive process.

A medical doctor who specializes in the treatment of hormonal abnormalities.

These are specialized cells that produce hormones released into the bloodstream. For example, the islets of Langerhans are endocrine cells in the pancreas that produce the hormone insulin. This hormone helps control blood sugar(glucose) levels.

Some rare tumors of the pancreas, the endocrine (Islet Cell) tumors, can produce these same hormones. It is very important that these rare tumors be properly diagnosed because it will determine the treatment and prognosis.

Surgical removal of a structure or part of a structure. For example, pancreatectomy is the surgical removal of the pancreas (or a portion of it).

The first portion of the small intestine. It is about 1 foot long. It is the part of the intestinal track that comes after the stomach.

A small anatomic structure. This is essentially a tube that carries various bodily fluids. The pancreatic duct runs the full length of the pancreas and drains into the duodenum.

The chemical in every cell that carries genetic information.

A dome shaped muscle that separates the lungs and heart from the abdomen. This muscle assists in breathing.

The disease in which the body is unable to appropriately control blood sugar (glucose) levels. This may be caused by failure of the pancreas to produce adequate amounts of insulin.

A fluid filled sac. Some tumors of the pancreas, including the serous cystadenomas and intraductal papillary mucinous neoplasms, form cysts. Cysts have a distinct appearance in CT scans. They are important to recognize because the treatment of cystic tumors can differ from that for solid tumors.

A dye, taken by mouth or injected, that is sometimes used during x-ray examinations to highlight areas that otherwise might not be seen.

A way to image internal organs. A series of x-ray pictures taken by a machine that encircles the body like a giant tube. Computers are then used to generate cross-sectional images of the inside of the body.

The treatment of a cancer by chemicals. For pancreatic cancer these include: Gemzar (Gemcitabine), 5-flurouracil, leukovorin, taxol, and others.

A small, flexible tube inserted into the body to inject or suck out fluids.

A cancer-causing chemical. Cigarette smoke contains a number of carcinogens.

A malignant tumor. It has the potential of invading into the adjacent tissues, spreading to other organs and may eventually lead to the patient's death.

A dramatic weight loss and general wasting that occurs during chronic disease.

A blood marker for pancreas cancer. It is not a good screening test for diagnosing possible pancreas cancers in individuals without symptoms. Instead, it can be useful in following the progress of patients known to have a cancer by measuring how their cancer is responding to treatment.

The middle part of the pancreas between the neck and the tail. The superior mesenteric blood vessels run behind this part of the gland.

The removal and microscopic examination of a small tissue sample.

A duct that carries bile from the liver to the intestine. This term may refer to the hepatic, cystic or common bile duct.

A green fluid produced by the liver that helps digest fats. It is transported from the liver to the duodenum by the bile duct. When the flow of bile is blocked, patients may become jaundiced (yellow skinned).

Tumors which are non-cancerous. These generally grow slowly and do not invade adjacent organs or spread (metastasize) beyond the pancreas.

The collection of excess amounts of fluid in the abdominal cavity (belly). It often is a sign that the cancer has spread to either the liver or to the portal vein that goes to the liver, or that the cancer involves the internal lining of the abdomen. If normal liver function is affected, a complex set of biochemical checks and balances is disrupted and abnormal amounts of fluid are retained.

The large artery that carries oxygen-rich blood from the heart. From the heart it arches backwards and descends into the abdomen where it gives off many branches to supply the organs. The superior mesenteric artery is a major branch of the aorta that can be involved by pancreatic cancer.

A radiographic technique used to visualize blood vessels. A contrast medium (a dye) is usually injected into the vessels to make them appear white on the x-rays.

A condition marked by a diminished apetite and aversion to food. Often results in physical signs of wasting.

A condition characterized by a deficiency in red blood cells. This can lead to fatigue among other symptoms.

A surgical joining of two hollow structures. It is similar to attaching two ends of a garden hose. For example, a gastrojejunostomy is a surgical procedure that connects the stomach and the jejunum (small intestine.)

This widening of the pancreatic duct as it reaches the duodenum is an landmark for physicians. It is where the bile duct and pancreatic duct join before draining into the duodenum (small intestine). Tumors in the head of the pancreas may squeeze this duct partially or completely closed. This can lead to problems with digestion and jaundice.

Chemotherapy given to patients after their cancers have been surgically removed. It is a secondary treatment given to supplement surgical treatment. (see Neoadjuvant chemotherapy which is chemotherapy given before surgery)

A benign (non-cancerous) tumor made up of cells that form glands (collections of cells surrounding an empty space).

The form of cancer that most people are talking about when they refer to "cancer of the pancreas." These tumors account for 75% of all pancreas cancers.

Microscopically, adenocarcinomas form glands. These tumors can grow large enough to invade nerves which can cause back pain. They also frequently spread (metastasize) to the liver or lymph nodes. If this happens the tumor may be considered unresectable.

A pus-filled cavity. Usually caused by an infection.

The portion of the body between the diaphragm and the pelvis.