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Giving Pancreatic Cancer its Due

I didn't plan to write about pancreatic cancer today. But sometimes a topic demands your attention.

A reader commenting on my Friday blog about my reckoning with mortality by reading obituaries noted that pancreatic cancer, the 4th-leading cause of cancer death in the U.S., doesn't attract anywhere near as much attention or funding as higher-profile diseases such as breast cancer.


Dr. Ronald Davis (Courtesy of the American Medical Association)
The same reader pointed out to me that November is National Pancreatic Cancer Month. Moments after reading that comment, I received a press release announcing that Ronald Davis, immediate past president of the American Medical Association, had died -- of pancreatic cancer. He was 52.

I've written about pancreatic cancer before; I've known a couple of people who have died (and died way too young) of the disease. Heck, if even the head of one of the nation's leading physician's associations can't dodge this disease, it must be bad.

The facts are grim: Though this cancer is relatively rare, expected to strike about 37,680 people in the U.S. this year, almost all who get it will die within five years of diagnosis. (For an inspiring introduction to a handful of survivors, check out this New York Times feature.)

It's a baffling disease: Nobody knows what causes it, its symptoms are vague, and we don't have a means of detecting it early; largely because the pancreas is buried deep in the abdomen and is a tricky organ to perform surgery on, we lack effective treatments. Chemo may buy time but rarely cures this cancer.

There are glimmers of hope. For instance, researchers have just discovered a weakness in pancreatic cancer cells that might be exploited to help inhibit their proliferation.

Pancreatic cancer needs attention: As professor-turned-pancreatic cancer-patient Randy Pausch, who died in July at age 47, ruefully noted, there aren't celebrity spokespeople for the disease because so few survive long enough to take on that role.

So maybe we could all do our part.

Learn more about pancreatic cancer at this Johns Hopkins University site; Johns Hopkins is a leader in the field of research into this disease. Visit the Pancreatic Cancer Action Network site for information about helping victims and their families and about how to advocate for further research.

As many experts have noted, we've tackled other seemingly intractable diseases. Maybe pancreatic cancer can come next.

Do you have experience with pancreatic cancer? Where would you channel research dollars: prevention? early detection? improving treatments?

By Jennifer LaRue Huget  |  November 10, 2008; 7:00 AM ET
Categories:  Cancer  
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Comments

My sister died of pancreatic cancer six years ago at age 52, less than five months after being diagnosed. Thank you for bringing this to people's attention and helping to raise public awareness about this terrible disease. As far as I can tell, the prognosis for victims is not any less grim than it was six years ago.

Posted by: pvernezze | November 10, 2008 8:56 AM | Report abuse

Thank you, Jennifer, for your quick response. I posted that request on Friday. My father died of pancreatic cancer in February, 1990, only two months after diagnosis. Life expectancy is 3 to 6 months after diagnosis for the average PC patient. He was 68 at the time. He had never been sick in his life unless you count a twisted knee when he was getting into his truck for work. PanCAN did not exist then. There were no advocacy groups to raise awareness. In the past few years I've done volunteer work with PanCAN, attending health fairs, passing out literature, answering questions the best I can. Every one in our local 'Team Hope' has lost someone to PC. At every fair I've met people who have lost someone close to PC or knows someone going through treatment now. It's hard to give them false hope when we all know chances of survival are slim. There is also an advocacy group based in Long Island called the Lustgarten Foundation. They're very active in organizing fundraising walks in major cities. I'm trying to get them to organize one on Washington, DC.

Wear purple in November -- it's PanCAN's chosen color. Other famous people who died of PC: Michael Landon, Donna Reed, Jack Benny, Henry Mancini, Marcello Mastriani, Anna Magnani (hope I'm spelling them right), Luciano Pavarotti, Juliet Prowse, Vince Edwards (Ben Casey TV star), Oona O'Neill Chaplin, Brock Peters, Alan Bates. Obviously wealth and fame doesn't keep you alive after PC gets its hooks into you.

Posted by: Baltimore11 | November 10, 2008 9:30 AM | Report abuse

Reader pvernezze is right on target about progress in this cancer (pancreatic ductal adenocarcinoma, PDAC). SEER data from 1985 to 2000 show a slight upward drift in 5-year survival from 3.5% to a little under 5%, but still very lethal, even despite the introduction of a new drug (gemcitabine). This year in the US there will be around 37,680 new diagnoses, and an estimated 34,290 will die from it. My boss was just coming out of a victorious tennis match at age 58 when his partner noticed jaundiced eyes, and recommended an immediate checkup. Despite surgery (Whipple procedure) and vigourous chemo which brought him into temporary remission, he died 18 months after diagnosis. Very sad, little hope :)

Posted by: vox_populi | November 10, 2008 10:13 AM | Report abuse

My father died of pancreatic cancer, in 1998, age 70. He died two months after diagnosis, almost to the day. We barely had time to say goodbye to him. No one should have to receive a diagnosis with such a grim prognosis, but over 30 thousand a year do, as your article points out. Yes, it is a rare cancer, but few are more deadly. More research into is needed. One spokesperson for this disease has been Jimmy Carter, not because he has had the disease, or survived it. But almost all in his family have died from it. Clearly there is also a genetic component for some with the disease.

Posted by: sarahbonnie1 | November 10, 2008 10:33 AM | Report abuse

After our father was diagnosed with pancreatic cancer, we had exactly 29 days left with him. I would channel research dollars to prevention and early detection. We know little about how this lethal cancer operates. It seems to me that we should figure out the how and why before we work on improving treatments that won't cure the disease anyway.

Posted by: cubeangel | November 10, 2008 12:05 PM | Report abuse

Likewise, when My Father was diagnosed with Pancreatic Cancer, two months.

However, the writing was on the wall!

Type 2 Diabetes, in a person no Family History of diabetes had!

Then, what appeared to be Hepatitis-for four months!

But, all said and done, there really was not much that could have been done!

One note though;

Saccharin! The Weight Watcher's group highly promoted, and my Father used-a LOT!
In the Mid Eighties, I'd SWEAR they were linking Sweet n Low to Pancreatic Cancer-And then the whole Study seemed to "Disappear"! :-(

Posted by: SAINT---The | November 10, 2008 12:48 PM | Report abuse

I don't know that much about pancreatic cancer, so I could be off here, but isn't most of the reason pancreatic cancer so lethal is that it's not usually detected (b/c no symptoms) until it's late stage? I would improve early detection for this reason. If it's caught in stage 1 or 2, isn't it as easily treated as any other cancer ('easy' being relative)? My thoughts to everyone who is battling this or has a friend or family member battling it.

Posted by: blahblah6b | November 10, 2008 1:25 PM | Report abuse

Links between Saccharin consumption and pancreatic cancer have been studied extensively and rejected. Smoking has been found to be linked to the incidence of pancreatic cancer, however.

Posted by: sarahbonnie1 | November 10, 2008 1:34 PM | Report abuse

Both my parents died of pancreatic cancer. My father died in 1969 at 53, only 3 weeks after being hospitalized for inability to keep food down. The cancer was diagnosed in the autopsy.

At the time, we blamed the cancer on the potent chemicals (including pesticides) my father handled as an agronamist. Doctors have since told me that may be a good guess.

My mother died in 2002 at 86. She died a month after being diagnosed. Secondary chemical exposure? (She washed Dad's work clothes.)

My brother and I joke that we know how we'll die...

Posted by: rlguenther | November 10, 2008 1:59 PM | Report abuse

I don't think they've pinned down any one common cause. PC can strike anyone. Cause can be genetic, environmental, whatever. My father was a big coffee drinker, with milk and sugar, no saccarhine -- carried a thermos of it with him all the time. He was a home builder and farmer who worked outside a lot, not around chemicals. Diabetes is not in the family; he didn't drink alcohol. How he developed it has been a big puzzle to us. However, I think having diabetes and PC in the family can be a big factor. President Carter, as mentioned by another poster, lost his father and three siblings to PC. Another mentioned it is often misdiagnosed until it's too late to do anything. Early syptoms are vague and can be ignored as a minor digestive upset or aching back. But some who have been caught in time and had the Whipple procedure died anyway.

PC is an equal opportunity disease. It strikes black, white, Asian, gay, straight, celibate, Christian, Jew, Buddhist, male, female, rich and poor. The only common denominator is the pancreas. If you have one you're a candidate for PC.

Posted by: Baltimore11 | November 10, 2008 2:25 PM | Report abuse

Anyone who has been touched by this disease knows what a terrible killer and quickly is does so. In may case, I lost my mother to it and we need much better screening methods -- I have 4 syblings so are we at higher risk? Is there any proactive way to stem its onset? So many questions need to be answered. Since people with the disease rarely survive, we need to have survivors of the relatives of these victims to work for more research. Patrick Swayze, looks like he will be the next high profile victim of the horrible disease.

One good website is www.curepc.org, which the Cablevision Corporation has been providing free air time to help The Lustgarten Foundation.

Posted by: TOB21 | November 10, 2008 3:12 PM | Report abuse

Science has yet to find a cause or causes for pancreatic cancer, but as is true for a number of cancers, there are some risk factors that are known or strongly suspected. Smoking is one.

rlguenther - with both parent's death caused by pancreatic cancer, I do hope you and your brother are screened for it. Georgetown Univ. has a program.. I do not know if you are local.

Posted by: sarahbonnie1 | November 10, 2008 3:13 PM | Report abuse

As a 6 and 1/2 year survivor; pancreatic cancer was the last thing I thought I had to worry about. At 42, I was well below the radar as a non-smoker, etc.

However, you will find that many individuals get PC who don't fit the profile.

Fortunately, for me - I had painless jaundice and all the doctors I saw kept looking beyond the simple story of possible gallstones for something else. It wasn't until I met with Dr. John Cameron at JHH were the full story unfolded. 4 weeks later was on his table for the whipple.

It was stage 1 pancreatic cancer. Following surgery I had 5 weeks of radiation and chemo. Still am disease free today.

Since, then, I've seen a number of other patients with pancreatic cancer pass on. I can't tell you why I got lucky and they didn't. I can't promise that with the same treatments - someone else will get lucky too.

This is why we so need more funding. This disease shows no pity or mercy to the patients and the families. It does not respond well to traditional chemos. Surgery is not an option for way too many patients. But too many people don't even know about it until it happens to them or someone they love. Even in medical circles, it's been hard to change perceptions.

Thank you for helping to shed some light. As a volunteer for PanCAN we are trying to change that story for everyone out there. But we need everyone's help to write a different ending.

If you would like to help - go to www.pancan.org. We have a chapter in DC and we are always looking for help.

Eileen (Alexandria, VA)

Posted by: meoconnell81 | November 10, 2008 3:13 PM | Report abuse

THANK YOU! Thank you so much for writing this!

I have not read all of the comments yet but I did see one suggesting that PC needs to be caught early -- yes that would be nice if only there were a screening test like a mammogram or PSA! There are NO tests available (therein lies the problem!) to detect this disease - part of that is due to funding and part is due to where the pancreas is located in the body - very hard to get to.

I lost my mom 2 years ago to this dreadful disease. She was a young, vibrant and life loving person and this disease robbed her of her life.

There is currently a bill in congress HR 7045 - it would be helpful if people wrote their representatives asking for help to get this passed. If they go to www.pancan.org and click volunteer there are easy one or two click ways to do this!

As far as where the money should go - I think that finding a chemo combo that will work to prolong life - make this a chronic disease vs death sentence would be the first line and then early detection.
Thanks again!

Posted by: MichelleH123 | November 10, 2008 4:17 PM | Report abuse

Wasn't Patrick Swayze diagnosed with the disease a while back? If there ever was a spokeman that EVERYONE would recognize it would be him.

Posted by: virgin12 | November 10, 2008 5:17 PM | Report abuse

My father died of pancreatic cancer in 1997. It is a HORRID disease. I encourage everyone to check out the pancreatic cancer research being done at Johns Hopkins Hospital. And then write a check to support this very hopeful and worthwhile project. Thanks again to all of the dedicated people at Johns Hopkins who are working tirelessly to stem the tide of pancreatic cancer!

Posted by: momE1 | November 10, 2008 6:48 PM | Report abuse

HI,
My heart goes out to all those who are or have loved ones suffering from pancreatic cancer. I am a caregiver for an idividual suffering from renal cell cancer which is also rare. It just breaks my heart that these rare cancers have no superstar advocates. I really would like to get to the author of this article and encourage her to also"wake up" the readership and health care " regarding this cancer. We are seeking support groups and counseling in an area quite distant from any major metro area and can find none. We travel to Johns Hopkins for appointments and treatment.

Posted by: Jems1 | November 10, 2008 7:42 PM | Report abuse

My husband died on January 3, 2007, 15 months after being diagnosed with pancreatic cancer. He was 61. He had not smoked since he was 26, he was a captain on sightseeing boats, and he hated the taste of artificial sweeteners. He did drink to excess on a regular basis -- and the best I can figure is that he had undiagnosed pancreatitis for quite some time. This is another possible cause.

If it were my choice, I would suggest increasing funding for research into a definitive diagnosis, and also an education program for doctors who might be called on to diagnose PC. There is a blood marker that becomes elevated with PC; however, it also becomes elevated with gastritis, and even sometimes in pregnancy. My husband had an ERCP at our local hospital -- the doctor there thought he had an impacted gall stone. It wasn't until his films were sent to Boston (with him in an ambulance right behind them) that PC was first discussed.

He lived 15 months with some pretty intensive, experimental chemo -- Gemcitabine, Xeloda, Tarceva, and a few more I can't remember off hand. More accurate chemo would be my next wish. Even Gemcitabine is not effective in all patients, and that's the only one targeted specifically to PC. Hopefully we'll get better funding someday. I keep raising money for research, and reminding my friends and family to do so, also.

Don't forget the Lustgarten Foundation -- they fund independent research into PC. More avenues are always better.

Posted by: PegiF | November 10, 2008 8:23 PM | Report abuse

Thank you for drawing attention to pancreatic cancer. I lost my 59-year-old husband to the disease after an 18-month battle. He was a research scientist who ironically researched cancer. Something he felt strongly about that could perhaps help many other pancreatic cancer patients was Johns Hopkins Rapid Tissue donation program. You're right, pancreatic cancer patients don't live a long time and the pancreas is difficult to reach for biopsy and surgery. Yet my husband believed that tissue databanks could provide scientists with a wealth of information. By agreeing to a rapid tissue donation at his death, he contributed to Hopkins ongoing research in identifying the different types of pancreatic cancer with the goal of finding more effective treatments. One small thing perhaps, but with the potential to create a big glimmer of hope for others.

Posted by: swampcollie | November 11, 2008 8:07 AM | Report abuse

Among other famous people who died of this awful disease: Bill Hicks, one of America's greatest comedians. And he was only 33.

Posted by: levbronstein | November 11, 2008 5:02 PM | Report abuse

As scientists explore viable diagnostic tests for pancreatic cancer, we also need to research improved treatments.

But the quest for a cure depends on much more than increased funding of pancreatic cancer research. People in general must become acutely aware of the need for increased participation in cancer clinical trials.

If you or a loved one has been diagnosed with pancreatic cancer, I encourage you to absolutely, positively explore every option to enroll in a clinical trial at an academic cancer research institution. In the Washington/Baltimore region, contact Lombardi Cancer Center at Georgetown or Johns Hopkins. Also, be sure to visit www.clinicaltrials.gov. Insist that your primary care giver not only keep the door open to a clinical trial, but help you pursue it.

You or your loved one, if eligible for a trial, will receive the highest quality care, and at the same time be contributing toward advances against this killing disease.

I know firsthand because my 44 year-old brother Will was diagnosed at stage IV five years ago, was given the usual 3-4 months life expectancy, yet lived 11 months thanks to novel regimens he received in a clinical trial at Georgetown.

You should not expect a cure, or even extension of life. But you can do more than hope. You've got nothing to lose by pushing hard and joining an appropriate clinical trial.

Posted by: beatlemaniacs | November 12, 2008 8:45 AM | Report abuse

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