Allied Health Professionals

OPCS Publication LIst

Frequently Asked Questions

I have a strong family history of pancreas cancer and I am worried about my risk. Are there any preventive measures I can take?

To date, standard screening recommendations for pancreas cancer do not exist. One of our research studies is looking at the effectiveness of various imaging techniques at being able to detect early stage pancreas growths or pre-cancerous lesions in high risk individuals. To learn more about this screening study, please visit the research section. In the meantime, please discuss your family history of cancer and possible screening options with your family doctor.

I've heard that pancreas cancer is rare. If that is true, what are the odds that I would have two relatives who both passed away from this disease?

Pancreas cancer is not as common as other types of cancer such as breast, colon or lung. In addition, most cases of pancreas cancer are likely random, or sporadic in nature. It is possible that two individuals in a family could both have pancreas cancer as a random occurrence. There may also be common environmental or lifestyle risk factors that may increase the risk for this cancer type in some families. However, it is possible that in some families, there is a hereditary predisposition, or genetic change, that can run in the family, and cause an increased risk for pancreas cancer.

Genetic studies are ongoing to try to identify the gene(s) involved in hereditary pancreatic cancer. If you would like more information regarding this research please visit the research section of this site.

Does smoking increase my risk for pancreas cancer?

Research consistently shows that cigarette smoking is a major risk factor of developing pancreatic cancer. For individuals who have a family history of pancreatic cancer, smoking further increases the risk for this disease compared to non-smokers. More studies are needed to look at the effects of second-hand smoke.

What other factors are associated with an increased risk for pancreas cancer?

More studies are needed to understand the environmental or lifestyle factors that increase the risk for pancreas cancer. In general, increased physical activity and a diet that is high in fibre, fruits and vegetables, and low in fat and meat consumption is recommended.  Please see our current and previous newsletters for more information.

Pancreatic Cancer Research Studies

A.  Ontario Pancreas Cancer Study

Since 2003, the Ontario Pancreas Cancer Study (OPCS) has aimed to identify genetic, environmental, and lifestyle causes of pancreatic adenocarcinoma, the most common type of pancreas cancer. Results from this study will help us understand risk factors, patterns of inheritance, and discover possible genetic and biochemical markers of pancreas cancer. We are also interested in evaluating pancreas cancer screening techniques with the hope that, in the future, this disease may be detected at an early stage. As of February 2015, over 1800 people have enrolled in the study.

The study identifies and contacts newly diagnosed patients with pancreas cancer. We identify patients from pathology reports transmitted routinely to the Ontario Cancer Registry and we will contact these patients with the permission of their physician. Only patients who have had a biopsy or another surgical procedure will have a pathology report available.  We also recruit patients directly from the Wallace McCain Centre for Pancreatic Cancer clinic at the Princess Margaret Cancer Centre. We invite patients from all over Ontario to participate. We recruit patients with any family history of cancer, although some patients may have no other cases of cancer in their family.

The first stage of the OPCS involves obtaining information about family history, cancer treatment, and personal history/lifestyle from a questionnaire package that is mailed to participants. The second stage of the study involves collecting blood (or saliva), medical records, and any available tissue samples from previous biopsies or surgeries. These samples are used to investigate potential sources of genetic risk of pancreas cancer. Genetic counselling is available to every participant. If there is a family history of cancer, genetic counsellors provide information and make referrals for further genetic assessment and possibly genetic testing when appropriate.

The OPCS team greatly appreciates the participation of everyone involved. If you have any questions or would like to be involved with our research, please contact us at fgicr@mtsinai.on.ca. You can also call our toll free number at 1-877-586-5112 and leave a message. We are happy to answer your questions.

B. Genetic Study for Pancreatic Cancer

Our Registry is collaborating with several other pancreatic cancer registries in North America on a genetic study called PACGENE (Pancreatic Cancer Genetic Epidemiology). The goal of this study is to learn about the causes of pancreatic cancer — both genetic and environmental. So far, our centre has enrolled approximately 600 families across Canada for this research and study recruitment continues. Funding for the PACGENE Consortium has been received through a grant from the National Cancer Institute.

Which families are eligible to participate?

Any family with two or more biologically-related individuals with pancreatic adenocarcinoma is welcome to contact our registry. We recruit families where the cases of pancreatic cancer are living and/or deceased.

What does participation involve?

We ask details about the family history of cancer. We obtain the medical records (where possible) for each diagnosis of cancer in the family. We are interested in enrolling people with cancer as well as their healthy relatives.

All participants are asked to complete a questionnaire asking about lifestyle and various environmental risk factors. We also ask participants to provide a blood or saliva sample and/or a tissue sample (from previous surgical procedures) for genetic studies. The most helpful samples for genetic studies are from relatives who have the disease.

All participants have an opportunity to speak with a genetic counsellor about their family history and the details of the research. Participation in this study does not require a trip to Toronto.

Who do I contact to participate?

Please e-mail fgicr@mtsinai.on.ca or call toll free at 1-877-586-5112 and leave us a message. 

C.  Pancreatic Cancer Screening Study – *enrollment is currently closed*

As with other types of cancers, early detection is associated with a better outcome. Unfortunately, the majority of pancreas cancer cases are diagnosed at late stages. This is mainly because the symptoms, if any, are non-specific. Different groups have been researching various screening tools for detecting early stage pancreatic cancer, but unfortunately, there are no proven clinical screening recommendations available at this time.

Our pancreatic cancer screening study began in 2003. The original objective was to determine the effectiveness of abdominal ultrasound and magnetic resonance imaging (MRI) for early detection of the most common type of pancreatic cancer (adenocarcinoma) in high risk individuals. In 2009, we discontinued the use of abdominal ultrasound based on our findings that it did not detect potentially important pancreas lesions (abnormal changes) that were identified on MRI.

Recent publications on pancreatic cancer screening have indicated that contrast enhanced MRI is more effective at identifying and evaluating pancreatic cancer lesions than non-contrast enhanced MRI. As a result, we modified our protocol again in 2011 and began investigating the effectiveness of contrast enhanced MRI on a sub-group of high risk individuals.  The new protocol restricted the number of participants to the 60 highest-risk individuals (under age 75) already enrolled in our screening program.  These individuals are from Familial Pancreatic Cancer (FPC) families (two or more biologically-related individuals with pancreatic adenocarcinoma) with at least one first-degree relative (parent, child, or sibling) with pancreatic adenocarcinoma, or they have a BRCA2 mutation and at least one first-degree relative with pancreatic cancer.  Participants are asked to return every 6 months for scans. The contrast-MRI scan is performed at Princess Margaret Cancer Centre in Toronto. Participants in this study must be residents of Ontario.

It is hoped that this study will shed light on better techniques that could be used to detect pancreatic tumours at the earliest possible stage.  We have not identified any significant pancreatic (or other) lesions since we began using contrast enhanced MRI. For more information about the pancreas cancer screening study, please e-mail fgicr@mtsinai.on.ca or call toll free at 1-877-586-5112 and leave a message.

A generous donation was made by Pancreatic Cancer Canada to the Princess Margaret Hospital Foundation to support our continued research in the early detection of pancreatic cancer. For more information about the Pancreatic Cancer Canada foundation, please go to www.pancreaticcancercanada.ca.

Is Pancreatic Cancer Inherited?

The majority of pancreas cancer cases are not associated with hereditary factors. Most cases are sporadic, meaning that there is not a specific known risk factor and its occurrence is not always predictable.

In some families, we may see pancreas cancer among relatives who have been diagnosed with other types of cancer such as breast, ovarian, melanoma, or colorectal cancer. Depending on the family history, these combinations of cancers can sometimes be associated with known hereditary forms of cancer for which genetic testing may be available.

In some families, we see a clustering of pancreas cancer. More than one diagnosis of pancreas cancer in a family can occur just by chance. Studies indicate that, in some families, there is likely to be a hereditary form of pancreas cancer. Our team is involved in finding new genes that cause hereditary pancreatic cancer.

If you are concerned about your family history, please discuss this with your physician who can refer you to a cancer genetics centre in your area for more information.

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