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Last Updated: Dec 12, 2008 - 4:54:39 PM |
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From the PANCAN Symposium in Minneapolis, Jan King, Angela Faas, Chris Sieberg, Juanita Bader & Deb Kurovski and seated, Ray Gensley and Maria Hawkins
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Pancreatic cancer is one of the few cancers for which survival has not improved substantially over the past 30 years. It is the 4th leading cause of cancer related death. This year, approximately 37,680 Americans will be diagnosed with pancreatic cancer. Statistically, 75% of them (28,260 people) will die within a year of their diagnosis. Within five years, only 5% will still be alive – a mere 1,884 people – and most of these will have a recurrence and eventually succumb to the disease.
PANCAN (Pancreatic Cancer Action Network), based in El Segundo, CA, is a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. They also give patients and caregivers personalized and reliable information they need to make informed decisions. PANCAN also helps individuals and communities across the country work together to raise awareness about pancreatic cancer and the funds to find a cure. You can learn more about PANCAN at http://www.pancan.org/.
I learned about PANCAN after the death of my mother, Jean Gensley. She passed away on May 8, 2007 about five weeks after being diagnosed with pancreatic cancer. Until I attended the PANCAN Symposium on September 12 in Minneapolis, Minnesota along with my Dad, 4 of my sisters and Deb Kurovski of Victor (who also lost her mom to pancreatic cancer) I did not know that there are two types of pancreatic cancer. I thought that pancreatic cancer was pancreatic cancer. One type of pancreatic cancer is called Islet cell carcinoma which is cancer of the neuroendocrine cells and the other is called metastatic adenocarcinoma which is a more aggressive & faster growing cancer. The latter is what my mother had.
If I had known about PANCAN and their PALS (Patient and Liaison Services) program I would have been more informed about pancreatic cancer. PALS provides a free, personal free call-in support that helps pancreatic cancer patients and their families take control of their health care. Using this program a patient can learn about available treatment options as well as clinical trials available before beginning treatment. It will help you locate a pancreatic cancer specialist with the experience you need. All services are provided free of charge.
Clinical trials are available depending on certain requirements or goals set by the person or persons doing the study. If you are interested in finding a clinical trial you can go to www.pancan.org, www.cancer.gov, www.trialcheck.org, www.cancer.umn.edu or by talking to your Dr.
When a patient with pancreatic cancer has side effects Jeannine Mills, MS. RD, LD of Dartmouth Hitchcock Medical Center suggests side effect management through diet and nutrition. Medical nutrition therapy goals are to prevent or reverse poor nutrition, maintain dose and schedule of cancer treatments, manage symptoms, maintain or improve weight and strength and to maximize the quality of life.
Gloria M. Petersen, PH.D. of the Mayo Clinic in Rochester, Minnesota discussed genetics & why they study families with pancreatic cancer. Family history is of interest, especially cancer in two or more close relatives (on same side of the family), multiple primary tumors, early age at diagnosis, bilateral or multiple rare cancers as well as evidence of genetic transmission from parent to child. Risk factors for pancreatic cancer include age, race, smoking, obesity, diabetes, chronic pancreatitis and family history (genes or shared environments). Most of my family members are currently enrolled in one of Gloria Petersen’s studies at Mayo Clinic.
Family history is one way to identify who is at risk and decide if genetic counseling would be a good idea as to whether or not you need checkups more often. Chromosomes, DNA and genes are important. If DNA is available from the person who has pancreatic cancer it can be used to see which gene had a mutation.
Shari Baldinger, MS, CGC of the Virginia Piper Cancer Institute says hereditary cancer accounts for only a small portion of all cancer. Your risk depends on the number of first- degree relatives affected. If you have one first degree relative affected by your risk for pancreatic cancer for close relatives is 2-5 times the general population risk. If you have at least one first degree relative and are a smoker you have 19-20 times the general population risk. At least one first degree relative and never a smoker is 6-7 times the general population risk.
You can help your doctor collect appropriate family history details. Know the type of primary cancer(s) in each relative and their age of the onset of the disease in each relative. Cancer status in 1st, 2nd and 3rd degree relatives, cancer in both sides of the family, ethnic background on both sides and other medical or environmental findings such as benign tumors, congenital abnormalities, pancreatitis, diabetes, smoking, etc. can all be helpful to your doctor. Family history is the key to risk assessment and determining who's at high risk and who would benefit from genetic testing. Family history collection tools include www.nsgc.org & www.hhs.gov/familyhistory/. Reasons for a genetic consultation are to learn about personal risk for cancer, children's risk for cancer, family risk for cancer & risks for cancer if you have a "cancer gene" or if recommended by your doctor.
Get involved with PANCAN at www.pancan.org. They provide so much information at no cost to you. You can also check out PANCAN's social networking websites: myspace.com/stoppancreaticcancer and youtube.com/stoppancreaticcancer.
My hope for this article is that more attention is brought to light about pancreatic cancer and how important it is to fund research so that a cure can be found.
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