Earlier this year, Carnegie Mellon professor Randy Pausch spoke to a Congressional committee about funding for pancreatic cancer, the disease that eventually took his life this summer. “We don’t have advocates for this disease,” he said, “because they don’t live long enough.”
Nearly 34,000 people a year learn they have the deadly disease. In today’s Patient Voices feature by my colleague Karen Barrow, six of them share their stories of living with pancreatic cancer. A seventh voice belongs to a sister who lost her brother to the disease.
You’ll meet Sandra Balkman Martin, 50, a retired teacher and eight-year survivor of the disease. And there’s Dr. Ron Davis, immediate past president of the American Medical Association, who recently discovered he has late-stage cancer. And there’s Carolynn Kiel, 66, of Laguna Woods, Calif., who lost her mother and sister to pancreatic cancer and who recently learned that she, too, has the disease.
Listen to their stories and others in the Voices of Pancreatic Cancer.
From 1 to 25 of 83 Comments
Oh this one hit home. My mother was diagnosed with pancreatic cancer after several months of suffering with abdominal pain. Unfortunately, by the time she was diagnosed the cancer had metastasized to the omentum and liver and she passed within 3 months. This disease devastated my family and we desperately need to find a means of early detection. I’ve recently read that stem cells may have alot to do with several cancers, including pancreatic. I pray we find a cure for cancer sooner rather than later and that we come to realize stem cell therapy may be the answer. Blessings on all these people and I wish them the best and pray for their survival.
— Marguerite, NYCIt is a tragedy that pancreatic cancer is such a devastating disease. However, we need to all band together and make Cancer a National Priority. We need to demand more money for research and collaborative research.
— Mike CraycraftPerhaps I should apologize for politicizing this issue, but I think we need a bit of politicization to correct our insanely skewed national priorities. 34,000 will learn they have pancreatic cancer, and our funding allocation for these devastating diseases is shameful compared to our current budgeting.
I have multiple myeloma. The amount of money we spend during *five* *hours* in Iraq would more than double the annual federal research investment in my disease.
Yes I will be voting for change, and change I can believe in!
— Brad GartonI lost my mom to pancreatic cancer in April. She fought the disease for over four years. She was always a fighter–a beautiful, brilliant ,and strong woman. Pancreatic cancer was not kind to her, or to the family. Nobody should have to live or die that way.
— Adam, DCMy best friend was recently diagnosed with the disease. One would think that early detection would be critical, but his, like so many others, was misdiagnosed from the start…the early symptoms are common to many other more common diseases.
And now, his has grown to over 8 centimeters and has spread to the liver, kidneys and lymphatic system. This once bear of a man (6′3″, 250 pounds) weighs 130 pounds, and can bearly walk. His life expectancy is measured in days.
My best wishes go out to everyone touched by this terrible disease and I look forward to any progress made in defeating it.
— Jason B.Such a tough Cancer….
— Greg Shinehttp://www.143mimi.com
My father, Robert A. Kuehne, died of pancreatic cancer Dec. 18 1984 at the Albert B. Chandler medical center in Lexington Kentucky. He was repeatedly misdiagnosed by several “doctors”. He was told he was malingering, getting old, drank to much, just had ulcers, had ordinary back pain, etc. Finally a doctor did a barium x-ray and confirmed that he indeed had an ulcer. He was sent home on a strict diet of bland food. In fact, the cancer had perforated the stomach. I saw him in October, and he looked like a concentration camp survivor, but I had never seen anybody die of cancer, so I didn’t know what to make of it. He finally diagnosed himself, a few days before Thanksgiving, when he started urinating blood.
He suffered terribly. Medicine dismissed his condition, and his suffering. At the end the doctors went into heroic mode. They did two useless operations, and he died hooked up to tubes and electronics.
Two of my sisters, I, and his wife was there when he died. I don’t think any of us can forgive the criminal “medical” treatment he got from the time of his first complaint in April until his death at noon Dec. 18, 1984. After he died, I looked up pancreatic cancer in our 1956 Colliers Encyclopedia. It should have been easy for a real doctor to catch. The back pain, nausea, loss of energy, myriad digestive problems, weight loss. Obviously I’m still angry, not that he got cancer and died, but about the misdiagnoses, the humiliation from arrogant doctors, the physical and emotional suffering he endured.
— John KuehneMy heart goes out to all of you that have lost loved ones to this terrible form of cancer & in fact to any type of cancer & those of you who are fighting cancer now. I agree that we need to have someone in the white house who will give more funding towards cancer research and help us to go forward, not backward, in finding a cure for this horrific disease.
— Marguerite, NYCThis is a terrible, heart breaking disease. The pancreas is buried deep, and often does not present with symptoms until it is too late for cure. One should maintain a good attitude, but understand those who succumb to this and other overwhelming illnesses are not “weak” or that they did not fight hard enough. Sometimes these conditions are like a train comming at you on a train track. All the stregnth and will in the world cannot stop it. In healthcare often the goal is to put the patient in the best position to heal, then if you believe in God it is in his or her hands.
— J. Ellis, MDI lost my mother to pancreatic cancer 8 years ago…. she died within 6 weeks of diagnosis. However, she had been complaining to her doctor about abdominal pain for almost a year… because she had a history of GI problems, he did not take her seriously enough to order a scan. She finally took herself to the ER where they discovered the mass in her pancreas. After a biopsy, which to my mind, further hastened the metastasis, she took to her bed and never got up.
My mother , a young 78 years, was a vital, active, energetic woman who would have lived for many years had not this devastating disease taken her life. I still grieve for her and the way the end of her life unfolded.
— Chris B.My concerns for early diagnosis and treatment of most cancers seem to reach closed ears.
— NurseTerryWhen I had my first routine colonoscopy I received a bill from the Endoscopy Center that did the procedure. I was told that because the exam was done to screen for any problems, the bill would not be paid by the insurance company ( I had Blue Shield PPO-private pay). Even though the MD found a couple of polyps, removed them and sent them on to pathology, it was still considered a routine screening. Ergo, no payment.
So, if you don’t have any complaints, but follow the MD orders to have a routine screening, be prepared to pay.
I even wrote Katie Couric, to no avail, regarding her push for colonoscopy and the fact that screenings are not covered.
How many of us will continue to have “screenings” because it is suggested by the MD. Most people cannot afford it.
I believe most if not all all cancers can be found by screenings. I just don’t believe that most people are willing to pay privately for screening and will wait until it is too late.
Pancreatic cancer is very hard to physically deal with. I know from personal experience. I am sorry for your pain.
http://www.caringisnotenough.net
Thank you, NurseTerry. My father died on pancreatic cancer in 1963, at 49 years old, leaving a wife and 4 young children behind. It doesn’t seem that in the last 45 years much progress has been made. Without this being seen as a slap at our neighbours, I am just so grateful to be a Canadian where making decisions based on the ability to pay for a procedure is never an issue. Our system is far from perfect but families caught in the terrible grip of pancreatic cancer don’t need the additional anxiety of cost being part of that stress.
— Joe BlowI lost my dad to pancreatic cancer nine years ago. Today is his birthday. My dad was a big man with a big voice, a huge presence in any room. Many friends said that he seemed indestructible. Like other families, we learned that he had pancreatic cancer after it had metastasized. He lived for six more weeks. We had wonderful Hospice care for him so that he could stay at home, and he died at home. Eating was very difficult for him, so I made him hot chocolate, which he loved. The last six weeks were really tough, but my dad made the most of the time he had left and said his goodbyes.
— Robin R.I lost my father to pancreatic cancer two years ago. After returning from a business trip, he experienced stomach pains and went to a doctor. He was diagnosed with pancreatic cancer and the diasese progressed at an alarming rate. He passed away 17 days later. My father, who worked out five times a week and religiously went to the doctor, never showed any outward symptoms until the stomach pains that sent him to the doctor just prior to his diagnosis. Its been two years now but my mother, brother and I all desperately miss him. At his death, we all reeled at how fact all of this happened - since then, we have sadly learned that with pancreatic cancer this often happens to patients. It is critical to lobby Congress to provide more funding for cancer research and more funds for pancreatic cancer research. Not to long ago, colon cancer was a death sentence. My hope is that pancreatic cancer will follow in its footsteps.
— Emily AtwoodIn memory of my friend Rosemary Andrukaitis who fought with her intellligence, humor, incredible determination and her physical being to beat her pancreatic cancer. She believed research is the answer and was willing to participate in any study to further a cure.
— Evelyn SchellerThis is such a dreadful disease and my heart goes out to those who have lost a loved one to pancreatic cancer.
— KimThe Pancreatic Cancer Action Network (www.pancan.org) is a great resource. The stories told here are very hopeful and I give my best to all of them.
My wonderful husband was diagnosed with this dread disease six weeks ago. Although the tumor was in the head of pancreas it had metastasized in his liver ruling out surgery as an option. We are fighting back with chemo and PRAYER, hoping for the best but planning for the worst. So far so good. Last weekend we danced at our son’s wedding!
— Dian WestThis summer I worked as a chaplain intern at a large hospital, where I was called on twice to spend time with patients later in the day after they had each received diagnoses of pancreatic cancer. The two patients reacted in quite different ways, which required me to be “present” for them in different ways. These two instances were only a week and a half apart for me, but I consider the time I got to spend with these two women among the greatest honors I’ve had in my life. This post brought it all back to me, and these individuals and their families, along with the other posters and their families, will most definitely be in my prayers.
— John C.Thank you for these strong and brave voices giving me hope to keep fighting. I too was diagnosed with pancreatic cancer in February, had the whipple, and having been undergoing chemo and radiation. In addition, I have been participating in a clinical trial to test a vaccine against pancreatic cancer cells. My brother died not two years ago from this terrible cancer so this disease is just too close to our family. Each day I have with my partner and my children is a blessing.
— Lucia NunezIn fond memory of George Wanamaker, who died of this scourge, far too young, in January 1981, age 52, Remembered and still missed by his many friends at the US Department of Agriculture.
— Judy G from Fairfax VAWe lost our father to this cancer 23 years ago, and it still pains us. He was only 53 years old. The last few months of his life was awful - full of pain. As my mother later said, “we wouldn’t let a dog die that way.”
Although I appreciate the attitude of the survivors, I don’t think the attitude makes a significant difference in surviving. This kind of thinking is a disservice to those who died.
A 5% remission rate is a lot better than it used to be but is still fairly deadly.
— Catherine BeachThis is a tragic and painful disease. The most reprehensible fact within this issue is that there are cures for all cancers that are not being shared. Hospitals and Insurance Companies can make millions “trying to find a cure”. Such a stupendous and disgusting lie….There are cures and selfish money hungry business people do not care about pain and suffering.
— Nicci BensonI lost my mother earlier this year to pancreatic/gall bladder cancer. This deadly disease has devastated our family. In a few short weeks my mother went from being a strong out going healthy woman to spending her final days in a hospital bed. Luckily she was not alone when she passed, our entire family was with her when the time came for her to leave our world. What struck me about this disease was the speed and lack of treatment to cure or at least prolong her life. It was difficult to understand that further treatment would have been useless and most likely caused her more harm than good. My mother loved her family more than anything in this world, she would not have wished anymore pain and suffering than necessary. I am glad I read this column today, it has given me the strength to do something proactive to help other families avoid the same fate. I love you Mom!!
— LuisI lost my father to pancreatic cancer Sept. 16 2007. His birthday was Aug.9th and he turned 53. On Aug.16th he was diagnosed with the cancer. I can’t believe what a whirl wind it all was, but I’m thankful that it was short because of how he suffered. My dad was a strong, amazing man, who was capable of anything. It just doesn’t compute sometimes and he is greatly missed. I do hope for a cure, however if you haven’t been directly affected by this or any other cancer, a cure is not priority(not until it’s you or someone you love deeply) Unfortunately, that’s the reality for most.
— Molly youngMy mother learned my father had PC, and was told he’d have 3-6 mo. I coached her I had a friend gone two weeks from diagnosis. My father made it two more months. It was tumultuous and traumatic going through all the gyrations with doctors, nurses, in-home care (shut down and changed to hospice), family trying to adjust and prepare while we watched my father drift off into a morphine daze.
My heart goes out to all who are caught unaware, both the patients and their families.
It is most likely my father’s mother died from PC back in ‘76 (she was 76, and it was written off as a heart attack), and by the time my father had it 25 years later, med science had made no significant improvements in survivor rates. I look ahead and wonder where things will be 20 years from now, when I may be facing that devil (hoping it waits at least that long). Based on results, I have to prepare for the possibility that treatment then may be no different than treatment today……..and hope for something better.
— Gene Lambird