The pancreatic cancer diagnoses and treatment of public figures such as actor Patrick Swayze, Supreme Court Justice Ruth Bader Ginsburg, and Carnegie Mellon University professor Randy Pausch has raised the profile of one of the deadliest forms of cancer and the need for more research.
In February, Swayze challenged the government in an article he published in the Washington Post titled Im Battling Cancer. How About Some Help, Congress? In the article, Swayze pleaded for Congress to vote for the maximum funding for cancer and disease research in the American Recovery and Reinvestment Act of 2009. Early last year, Pausch, who died from the disease in July, testified before Congress about the need for more research funding.
This is a disease where we dont have a lot of advocates, because they dont live very long, Pausch said in an online narrative about his appearance before Congress.
Pauschs plight received worldwide attention after his final lecture at Carnegie Mellon was viewed online by millions worldwide and was later turned into a book.
Swayze and Pauschs words and the pleas of many others did not go unheeded. Congress passed an act that includes $8.5 billion for the National Institutes of Health to study serious diseases, including cancer. And in his recent address to Congress, President Obama said he wanted scientists to find a cure for cancer in our time.
Pancreatic cancer has such a poor prognosis because its cells are highly resistant to treatment. Only about 4% of patients diagnosed with pancreatic cancer live more than five years. In addition, mortality rates have changed little over the past 20 years, according to the National Cancer Institute. Researchers are hoping the current media attention to pancreatic cancer and the new funding from the stimulus package will build on a flicker of hope that is being kindled.Supreme Court Justice Ruth Bader Ginsburg
For pancreatic patients, now there is some hope, says Rosalind Walker, RN, BSN, senior study coordinator at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University in Baltimore. We havent found a cure yet [for metastatic disease], but we can give them a longer and better quality of life with new treatment regimens.
Tumors Not an Easy Mark
The poor survival rate seen in pancreatic cancer is caused in part by its cells resistance to treatment and the difficulty in detecting tumors in their early, most curable stages. Pancreatic cancer tumors are not easy to palpate during physical exams, and patients often have no symptoms until the disease has metastasized to other organs.
We are not in the preventive era yet, Walker says.
Also, no reliable screening tests are available because existing blood tests are not sensitive enough to pick up the disease in its early stages. The carcinoembryonic antigen and CA 19-9 tests can detect pancreatic tumor markers but are not always accurate. They are generally used to help monitor treatment and remission for diagnosed disease. In addition, abdominal CT scan, which can pick up some, but not all, early pancreatic cancers, is not feasible as a routine mass screening tool.
Ultrasound testing is a potential screening test that would be safer and more economically practical than routine abdominal CT scan. Endoscopic ultrasound, in which a probe is passed into the esophagus, is more accurate than abdominal ultrasound, but the invasive procedure is not feasible for mass screening. It is useful in the diagnostic process in suspected cases.
Despite this, Walker says the oncology team at the Sidney Kimmel Comprehensive Cancer Center is beginning to see more patients earlier in their disease process than ever before. She says this is due in part to improved imaging technologies and healthcare providers making a definitive diagnosis of symptoms and following up on risk factors, such as family history.
About 10% of pancreatic cancer cases may be linked to heredity, according to the American Cancer Society. People who may have a high risk of inherited gene mutations that increase the chance of developing pancreatic cancer can undergo genetic testing. Other risk factors for pancreatic cancer include smoking, chronic pancreatitis, diabetes, cirrhosis of the liver, and heavy alcohol use.
Currently, many cases of early pancreatic cancer are found incidentally through surgery or testing for other conditions. For example, Justice Bader Ginsburgs stage 1 pancreatic tumor was discovered early during testing for colorectal cancer.
When symptoms do appear, they are generally related to the growth of a pancreatic cancer tumor. As it grows, the tumor interferes with digestive processes resulting in vague symptoms that include diarrhea, nausea, vomiting, poor appetite, and weight loss. Patients with pancreatic cancer also may develop hyperglycemia and deep venous thromboses. A tumor that grows on the head of the pancreas near the common bile duct can compress the duct in its early stages and result in an enlarged gallbladder and jaundice with pruritis.
One of the most vague symptoms is itching, usually on the back, abdomen, and arms, says Carol Clegg, RN, MS, MeD, APN, NP-C, an adult nurse practitioner in the department of surgical oncology at the University of Texas M.D. Anderson Cancer Center in Houston.
Itching and jaundice may indicate an early tumor growing on the head of the pancreas, but if a tumor is growing in the tail of the pancreas, jaundice and itching may not occur. These tumors often are not found until they have grown to 5 to 6 centimeters, Clegg says.
By that time, its metastasized to the liver, she says, adding that when a tumor has metastasized, pancreatic cancer is generally terminal.Carnegie Mellon professor Randy Pausch (1960-2008)
Cure Versus Palliative Care
The only curative treatment for pancreatic cancer is surgery, which is often combined with radiation therapy and/or chemotherapy to prevent microscopic cancer cells from metastasizing. Unfortunately, only about 5% of case of pancreatic cancer are truly resectable, according to the ACS.
The most common surgery is the Whipple procedure (pancreaticoduodenectomy). This complex surgery includes removal of the head and sometimes the body of the pancreas, as well as part of the stomach, small intestine, gall bladder and common bile duct, and local lymph nodes. The procedure requires an extended recovery period.
The Whipple procedure has the potential for many complications, says Phuong Huynh, RN, BSN, clinical nurse coordinator, GI oncology, and nurse lead coordinator for the Pancreas Cancer Specialty Clinic, a part of the Seattle Cancer Care Alliance in Washington. But we also have had patients in their 70s who had that procedure and are doing excellent.
In fact, 76-year-old Ginsburg returned to work in less than three weeks after her surgery for pancreatic cancer.
Radiation and chemotherapy also are used to slow the growth of the tumor, relieve symptoms, and extend life. Gemcitabine (Gemzar) is the chemotherapy drug used most often to treat pancreatic cancer.
Many treatments have been tried for this disease over the years, says Denise ODea, RN, APRN-BC, OCN, an NP at St. Vincents Comprehensive Cancer Center in New York. What we have seen is improvements in symptoms, quality of life, and disease-free survival [periods of remission], but overall patients are still dying in the same amount of time.Jeff Ross, Sacramento, Calif.
Research in the Works
The good news is that numerous new pancreatic cancer clinical trials, many studying drug regimens, are now unfolding. For example, researchers at St. Vincents are opening a neoadjuvant study that will study long-term survival of patients who receive chemotherapy before and after surgical resection, among other outcomes.
The Fred Hutchinson Cancer Research Center is studying neoadjuvant chemoradiotherapy, as well as safety and effectiveness of a vaccine drug. The vaccine causes an immune response that targets pancreatic cancer cells.
Several clinical trials have been conducted at Johns Hopkins to evaluate the effectiveness of a pancreatic cancer vaccine. Researchers at Anderson Cancer Center are studying the effectiveness in screening people at high genetic/familial risk for pancreatic cancer using endoscopic ultrasonography, CT, and MRI/MRCP.
In the meantime, nurses in many settings may care for patients with pancreatic cancer who are living with a bleak prognosis. ODea says its vital to encourage good nutrition in these patients and refer them to a nutritionist. She also says to encourage patients to talk about their symptoms, especially pain, so they can be effectively addressed.
Good pain control is key in ensuring patients can eat, work, sleep, and live as comfortably as possible.
For more information on how celebrity cases are bringing new attention to pancreatic cancer, see the ONS Connect editorial Use Celebrities to Start the Conversation About Cancer at http://onsconnect.epubxpress.com/link/conn/2009/mar/4?s=0
Loyola Pancreatic Cancer CareMarilyn Parker, RN
Every week, new patients arrive at Loyolas Cardinal Bernardin Cancer Center in Maywood, Ill., for pancreatic cancer treatment. Some will be able to undergo pancreatic surgery, and some will not. Those who are able to have surgery, such as a resection or Whipple procedure, are considered lucky because they have a better chance at survival.
Its kind of a devastating diagnosis, says Marilyn Parker, RN, BSN, multidisciplinary coordinator at the center. The most important thing I do is to be available for them.
Parker cares for patients who are able to undergo resection. She meets with each patient at the clinic before surgery and explains what he or she should expect during surgery at the hospital. Directly after surgery, hospital nurses care for the patients before they are sent back to the clinic for follow up with Parker.
Patients appreciate any optimism you can give them, Parker says. When they hear its resectable, its so wonderful.
Nutrition plays a large part in each patients post-op care. After a resection, patients lose the ability to make digestive enzymes and their food intake may decrease because of changes in taste, problems with gastric emptying, and poor appetite.
Parker remembers one patient who was losing a lot of weight. After talking with the patient, Parker learned she was not taking digestive enzymes because she couldnt afford the prescription. So Parker gave the patient prescription samples from the drug companies, and her condition improved.