There is an early detection blood test product coming to the market soon. A swedish company Immunovia has 96% accuracy of finding PC in stage 1.
They will start out of pocket sales next year. Exact date will be depending on CLIA accreditations.
22
I am grateful for the details in this article. My husband’s mom died from PC within a short time after her diagnosis. At 56 my husband has no symptoms and is in relatively good health. However nothing I have read or researched before mentioned a link to melanoma in the family. His family does have a history of melanoma so I am going to encourage him to have the DNA testing so he could take advantage of early interventions and possibly baseline MRI given family history and the fact that we have pretty good insurance and an HSA that would cover the $250. I am glad I stayed up til the wee hours to find and read this information.
23
My father died of pancreatic cancer. Even though I was an RN with a Master's, oncology was not my specialty. From diagnosis of Metastatic Cancer of unknown origin to death was 2-1/2 months. I took off work to be home with him. He went from walking and doing all ADLs unassisted to a wheelchair within a month. A month later he was bedfast. A few months before his diagnosis, he was riding ATVs on rugged terrain and cutting logs with his chainsaw. We not only experienced the agony of watching a beloved patriarch suffer immeasurably and be reduced to helplessness, but we felt absolute shock at the speed at which the disease took such a vital man. We had no idea. For such an horrific disease to be the third leading cause of cancer death is testimony that our society may not be as advanced as we think it is. Surely the richest society on earth can find in its budget ways to vigorously fund more research to combat this illness and other terminal diseases.
32
You may remember Steve Jobs, who is a father of Apple, died of the pancreatic cancer. He was told that he was lucky to remove the cancer because it was located where it is easy to get rid of by a surgery. However, the cancer had transferred to other organs quietly. That's the most troublesome point. The pancreatic cancer grows really quietly and affects other organs without notice. We don't feel it until it has grown into higher stage of cancer. As a medical student, I'm interested in the pancreatic cancer, which has a lot of things undiscovered . I hope from the bottom of my heart that we should keep investing science that pushes the boundaries of human knowledge.
28
@shin
I have limited information but I believe that Steve Jobs' tumor was a Pancreatic Neuroendocrine Tumor or PNET that originated in the pancreas endocrine tissue that produces hormones. The more common types of pancreatic tumors are exocrine adenocarcinomas.
This is likely beyond the scope of this article, but I would ask the author if the germline mutation tests suggested, such as BRCA, detect risk for PNETS or only for adenocarcinomas. Is there a different screening process for people who have neuroendocrine tumors in their family or personal health history, be they pancreatic or bronchial, or lung?
Thank you.
16
@shin
Steve Jobs waited nine months after diagnosis to have surgery. Instead, he used alternative treatments, AMA, and when they failed, he finally agreed to surgery. Too late for him. I hope others do not follow his example.
2
Ugh. This opinion piece illustrates the sometimes vast chasm between clinical work and scientific research. The math for early screening and pancreatic cancer just doesn’t hold up. Most people are going to be scanned by CT, not MRI (trust me when I say an abdominal + pelvic MRI takes a long time), which is going to end up causing cancers given the large number of people who would be screened. And the sheer cost would be enormous.
Me: 9-year lucky duck pancreatic adenocarcinona survivor and epidemiologist.
20
@skeptic I've had two abdominal CT scans in the last ten years, am I going to get cancer because I had these CT scans? The last one was to r/o pancreatic pathology when I was having stomach pains for over a month after I got my booster shot. Everything was fine and the pains later resolved.
4
@Apprehensive Two CAT scans done for necessary reasons would not significantly or measurably increase your risk for cancer whatsoever. The point that @skeptic was making is that scans done for screening purposes alone may cause harm, since a screening program for a cancer such as pancreatic cancer would require scans in a large number of people who do not have the cancer, for the program to be effective. He is correct in that there would be less harm if MRIs were able to be used for screening, but there would likely be a large increase CT scans if screening for pancreatic cancer were widespread. I would not worry about the two appropriate-sounding scans that you had performed.
1
I found this article promising because pancreatic cancer discussion has been infrequent. My dad died at the age of 67 from pancreatic cancer and was told he probably had 3-6 months to live. He lived 6 months. No cancers are pretty, but this is a particularly grueling cancer. My dad opted not to have treatment. He didn’t see the point, and in retrospect, that was a brave choice, to spend the time with his family, instead. In a scan for another issue, I was found to have nodules on my pancreas a few years ago. I saw a specialist and he said a biopsy was a 50/50 choice, I could opt to have it or not. I decided to have it and he agreed, it was a good idea given my family history. The test results were benign. Last year I had genetic testing and since there is little cancer in my family, that was good news for me, which is not to say I may never have it. I have an MRI every few years to check if there is further growth of these nodules. I think it is worthwhile, particularly because this is a silent cancer. I welcome research into this field and further articles and discussion.
25
I read this article and the comments avidly but with a heavy heart. We lost my sister-in-law to this in Aug. 2017 11 months after diagnosis. To be honest, she made terrible decisions about her treatment, including having surgery by a general surgeon at the hospital where she worked as a C.N.A rather than going someplace like M.D. Anderson to receive treatment by a specialist, which her insurance would have covered. and where she almost certainly would have been advised to do chemo before resection.
But as to screening tests, can the doctors here comment as to the possibility of elevated liver enzymes (as detected in bloodwork during illness such as flu, or routine comprehensive metabolic panels as one commenter mentioned) having potential as an early clue???
11
My mother died of pancreatic cancer in 2009 less than four months after diagnosis. There was no way that she could have surgery with the illness found so late. Her only risk factor was smoking which she had quit 25 years before her diagnosis. I'm glad you learned their ways for my siblings and I to be screened early. Ok
7
I lost my mother to pancreatic cancer July 3rd a year ago. She was an otherwise vibrant, active woman. The following month, my 26 year old son was diagnosed with melanoma, thanks to his mom pointing out a suspicious looking growth on his right cheek. After his MOHS procedure, he now has a 5" scar on his face, but he has his life, and a lifetime of melanoma check ups ahead.
Reading this article has prompted me to pursue a DNA test to see where I stand in the pancreatic cancer lottery. I would never have known there was a correlation between melanoma and pancreatic cancer.
18
https://www.nytimes.com/2019/03/19/business/monsanto-roundup-cancer.html?action=click&module=Latest&pgtype=Homepage
Monsanto's Round-Up causing cancer?
10
I wonder if the day will come when those individuals with a genetically significant pancreatic cancer risk will be given the option to have their native pancreas removed and live with an insulin pump and exocrine hormone replacement.
7
Not a single mention of costs. We're told 9% of patients are alive after 5 years. We're not told what their quality of life is after those surgeries and chemotherapy, nor how much the whole thing costs.
Sorry to say, these are necessary discussions. Especially if the patient is elderly with several co-morbid conditions.
16
@drdeanster Only in America, where we can find so much money to please the wealthiest and most powerful, yet we have to be stingy when it comes to treating the sick.
6
If we do move toward some sort of universal health care, I wonder what will happen to unfinished battles like this one against pancreatic cancer. My wife is fighting ovarian cancer, another disease with low survival rates. Will Congress and its lobbyists want to invest in fighting these high-cost medical challenges? It seems that Congress never seems to have enough money to pay for things like these.
24
@Charles Tiege There's enough money, it just needs to be re-directed. Spending billions on a 'wall' vs. health care makes no sense to me.
44
Never give up. There is hope for pancreatic cancer to stop being an automatic death sentence.
PANCAN (Pancreatic Cancer Action Network)
My sister (63, white) is in a trial at UTSW and is 1.5 year into the program. Her trial director is Dr. Muhammad Beg at the Harold C. Simmons Comprehensive Cancer Center.
We have met many pancreatic cancer survivors, some with four years, a few going on to ten.
All recommend being involved with their team of doctors. To ask questions. To participate in support programs. And most importantly, strive to maintain a positive attitude.
Open your heart to possibilities.
37
My uncle was BRCA1 positive. He learned that after being diagnosed with breast cancer at around 70 years of age. He was diagnosed with prostate cancer a few years later. With subsequent yearly screening because of the two BRCA1-related cancers, his pancreatic cancer was detected in its early stages. He survived the surgery and did very well. He died when he was 97 years old, but not from cancer.
57
@Elizabeth
Thanks..I'm brca 2. What type of screening did he get for pancreatic.
John
6
I'll admit it: the clickbait title got me: my mother died of pancreatic cancer this year, after only 18 days with a diagnosis, and I wanted to learn more. While I'm glad to have learned about potential genetic markers, I found this article missing in some of the common symptoms that can be overlooked by doctors and by patients who may all too easily dismiss these as "just aging." My mother was only a smoker, with no family history of pancreatic cancer, no diabetes, no obesity; what she had were, in hindsight, symptoms she should have discussed with her doctor, or that her doctor might have looked into further. This could have been a more useful article in being more rounded in its recommendations re: early detection.
19
@Susan I am sorry you tragically lost your mother to this disease. Here the author is advising the public "who are at risk" (and their medical community) to more actively pursue currently available and overlooked ways to achieve true "early detection" in a more beneficial time frame than relying on the advent of symptoms as the alert. Hence, a discussion of common symptoms, though informational, are not directly relevant to his position. See:
"Most of those who do not get help until symptoms arise are unable to have lifesaving surgery. Without surgical resection, there is little hope of long-term survival."
11
@Susan mind telling us what her symptoms were that were seen as "just aging"?
14
@Jolie: for her it included a number of things: extreme tiredness, gradual weight loss, increasing abdominal pain, gradual loss of appetite. In hindsight we as family acknowledge that we observed these and had made some comments about them ourselves, but dismissed it because of her age and because she was incredible active. She eventually spoke up because the pain was disrupting both wake and sleep, and was accompanied by nausea and sensitivity to smells.
12
There is a line that is crossed in which intense preventive medicine strips us of our humanity and treats us like an automobile. I suppose we all have our own idea as to where exactly that line is, but for me, what is described in this article, the line has been crossed. I am 67 years old and I recognize that living is not risk free so it doesn't bother me that I may one day die of cancer. I refuse to let the medical industry, and the NY Times for that matter, instill the fear of dying into me to the point that I become dependent upon the industry simply for peace of mind.
22
@Scott Werden
I have two automobiles, each a classic, and over 30 years old. They continue to appreciate in value although parts are becoming rare and more expensive. One manufacturer licensed companies to reproduce exact replicas of the originals, reasoning that they should capitalize on the affection owners have for this auto rather than leave their valued customers at the mercy of hoarders and scalpers. Periodically each car goes through a diagnostic checkup so that maintenance can be done on wear parts. Today the diagnosis was a failing resistor in the airbag circuit; replaced at the part cost of $7 and $40 labor. Yet, had we (my mechanic and I) not discovered the flaw the airbags might not deploy as designed, killing me or a beloved passenger. Another intermediate result could be $1000+ to replace the airbag. These maintenance costs are vastly cheaper than monthly car payments, even as both cars continue to appreciate. Each event described here is an analogy to healthcare.
Intense preventive medicine is"crossing the line" from humanity to automobile? We should be so lucky.
15
@Scott Werden - "strips us of our humanity..." Yes, I agree. 37 years ago my father was diagnosed with pancreatic cancer after having 'minor' ongoing complaints. Our first alarm was when he showed up at a family celebration poorly shaven - never by our fastidious father, not wanting to eat and leaving early. He took an ambulance ride that evening and died less than 3 weeks later. He decided, along with his doctors support that he was not willing or interested in going through any degree of treatment based upon the prognosis. Our family was devastated but we have always thanked him for having the fortitude to make that choice. BTW, Being Mortal by Atul Gwande is an excellent book to read on that issue - as well as others. More recently, a friend of mine was diagnosed based on a jaundiced pallor. Her tumor had blocked bile flow very early and she had surgery and it has been 11 years ago for her. Paying attention to ones health has its benefits.
20
With respect to Dr. Simeone, she says herself that half of her patients do not have an identifiable risk factor. Even among those diagnosed with pancreatic cancer, only 15% have a recognizable germ line mutation. The vast majority of people who smoke, drink or are obese will not develop pancreatic cancer. Getting a CT scan in all of those will probably cause more radiation-induced cancers than lives saved by early detection.
17
STUDIES ARE NEEDED TO Determine how much it costs each year for the medical treatment of those with pancreatic cancer, then a cost/benefit analysis of how much screenings would cost along with an increased cure rate. About 1 in 10 people with pancreatic cancer carry a BRACA gene. If they can be identified early, they can be monitored and treated early. Not to mention the cost savings for repeated scans and end of life hospitalizations, as not everyone chooses to enter into a hospice program.
4
My mom was diagnosed with pancreatic cancer at the age of 75: upon telling my personal physician of this occurrence he immediately asked/stated "and she died at 70 what? I told him she died at the age of 90 which is true and the cause of her death was not pancreatic cancer. The cancer was completely wiped out: however she became insulin dependent (needle injections) for which she could go numerous days in a row without her bloodsugar being a problem. The symptoms she experienced were sharp pains in her side and countless hospital stays until the diagnosis became apparent.
24
I wonder how many who get services at the writer's clinic are not insured and unable to pay very much. Perhaps there is some funding that applies, but I'm sure most of her patients are insured or on Medicare/Medicaid. I am glad we continue to make medical progress. But it is absurd that, as it is widely reported, if we had a health plan for all, it would bankrupt us. Like so many other issues (immigration, education, money in politics, gun policies and others) there is a complete disconnect between progress we make and the lack accessibility to that progress by many people. Not a majority of people, but a substantial minority--perhaps 25--40%. "Freedom and justice for all" has to include economic justice, or there is no freedom for many. We are lucky this has not yet led to an organized rebellion by those left behind by our economy and by our justice system. This has to be more substantially addressed if we are to be truly "America the Beautiful." Freedom and justice for all.
19
a celebrity's cancer diagnosis raised the awareness and concern about the survival and early detection. to quote Ruth Bader Ginsberg to emphasize the early detection is unjustifiable and misguided information. she was a post-colon cancer survivor and early detection of her pancreatic cancer was one of lucky occurrence as a result of the common recommended diagnostic procedure after cancer. routine screening with an elaborate test such as a CT scan or MRI is not a cup of soup to consider. it is a waste of resource and added anxiety to the scores of people with the false diagnosis. the author failed to mention what was the reason Ginsberg went through the routine CT scan. she was a cancer survivor and most medical profession agree CT scan is one of a necessary test in this situation. let's not bankrupt this country by creating fear and paranoia with wasting of resources.
19
Thank you for an interesting and informative article meant to start the dialog and information with the public.
I will say that my mother, brother and aunt all died of lung cancer (2 smoked till death, one had quit 20 years earlier but was a sheet metal worker and wore no mask). My mother and aunt (my mom's sister), declined all treatment except for antibiotics when recurring pneumonia occurred. My brother had full on chemo and radiation. My mother lived 4yrs 6 months after her diagnosis from an xray, my aunt lived 2.6 years after her diagnosis from an xray also, My brother lived 2 years after diagnosis. My mother basically died because her tumor grew very large, my aunt - not sure but she had continual pneumonia/bronchitis, her kidneys failed and she had trouble breathing a week before she died. My brother experienced excrutiating pain, unbearable, non stopping, horrible pain (I sat with him for hours) my mother and aunt had little to no pain. All 3 had non-small cell lung cancer as diagnosed by a physician - but my brother was the only one to have a biopsy. My brother had quit smoking 20 years before his diagnosis, my mom and aunt smoked until they died. My brother died at 58, my aunt at 71 and my mom at 72. When I get lung cancer, if I do as I quit smoking 31 years ago, but it's every present in my mind, I will refuse all treatment. The agony of my brother's death versus my mom and aunt was palatable, it was horrendous. So to my mind, early detection is the only cure.
30
@KT B I am so sorry for your losses. I've watched several loved ones suffer horribly before dying of this wretched disease, and I too know the fear of being next in line. I wish you all the best.
13
@Roberta thank you Roberta. I realize my post was all about lung cancer, but my point was CANCER cannot be cured unless detected early. Again thank you so much for your words.
11
No discussion of risks of pancreatic cancer related to carcinogens in our environment in this discussion. Our rural agricultural area is a bulls eye for pancreatic cancer and many others as well as , ALS, MS and other neurologic problems. We are in a valley surrounded by mining, Bt corn everywhere thus Roundup contamination is ubiquitous. Before Roundup there was Atrizine, 2,4 D, agent orange, etc. sprayed on crops when we were told by the extension agents and companies who produced the poisons, that they were benign to humans. Then there was DDT sprayed from planes on everyone one spring day. We had no bugs that summer, no birds or fish in the brook either.
This history and even current practices, seems to be a non starter for discussion these days.
46
@Peggy Conroy
Thank you for bringing up this very important point and describing this terrifying history of environmental abuses. The toxic effects of these chemicals should be a major consideration of epidemiological and public health research. and we should stop recklessly approving new chemicals and then waiting decades for the damage to show.
15
@Peggy Conroy
I agree totally. My father died of pancreatic cancer in the early 1980’s. He was 63. I am convinced his time
fighting 3 wars in Southeast Asia is to blame...particularly
serving in VietNam in 1966-67. Agent orange.
Now I live in rural Maryland where chemicals are routinely
sprayed on crops twice yearly. It is truly disheartening how
our society ignores so much happening around them. Round-up is sprayed in our dog park routinely and nobody seems concerned. Wake up people!
to worry.
22
.
Thanks doc -- plain language & helpful info like maintaining a healthy life style :
no cigs, booze, excess body fat. Exercise would prob be helpful I would think
.
10
Wow. Nine percent, even with early detection.
11
No offense to Dr. Simeone, after working in health care for 43 years, I've found that "early detection" is the favorite marketing phrase in the Medical Industrial Complex. It preys on people's fears and hopes that their cancer can be caught early and cured. And it generates billions.
Do you know what "early detection" of cancer means in the majority of cases? It means more years of anxiety, costly and painful treatments, little quality of life, and a blurb next to your name in the obituary about the "courageous fight" that the deceased fought. To no avail.
After reading this, to all those out there who erroneously will claim that "early detection saved my life" I say this: You would have lived as well or better not knowing. Your cancer or disease wasn't going to kill you. A great retrospective study would be to autopsy every person 80 years of age or older and see if they had a tumor growing in them that went undiagnosed before they died of something else.
That's the beauty of "early detection." It fills the waiting rooms and the coffers. And it doesn't save anyone who has pancreatic cancer.
41
@judgeroybean While lead time bias does indeed explain some of the apparent life extension we see with early detection it would be grossly misleading to claim that it explains all or even most of it.
Lead time bias (the apparent increased survival that is the result of earlier detection but not increased longevity) is a well known issue and something that is measured and corrected for when studies are done to determine the effectiveness of any effort to evaluate early detection techniques. Early detection does not always result in better outcomes but it does a large disservice to patients and would put millions of patients at risk to conclude that early detection as currently practiced is not a crucial live saving and life extending tool.
21
@judgeroybean
Or early detection means that you receive treatment and go on to live. You may have had years of experience in health care, but you seem to have missed the reality of many who have survived the same cancers that have killed relatives.
19
@judgeroybean
Or early detection can provide hospice care when primary (fatal) dx refused to provide it for five years.
3
Ok, there is a First: Know my risks and DNA testing. Where are Second and Third? Buried is drinking, diet and diabetes. Maybe my poor comprehension skills, but something this important needs some better organization and editing.
3
@AEB "Risk factors we can control include smoking, drinking, obesity and Type 2 diabetes, which doubles the risk."
3
.
@Victor, Ha! I just copied that from the article.
.
"...doubles the risk..."
.
1
Sorry but by the time people are diagnosed it's too late to. do much of anything but keep the patient comfortable.
11
@Sherry Moser steiker
Not true and I speak from experience.
What a ridiculously cheery article.
I am a pancreatic survivor of 1 year with two clean CT scans under my belt. An astute urgent care doctor, whom I had gone to see because I was inordinately tired after what I thought was the flu, ordered bloodwork which revealed ridiculously high liver levels. Fast forward to the next day in the ER, I was diagnosed with a mass on the head of the pancreas that turned out to be cancer. I was a lucky person and had outstandingly successful Whipple surgery. Although an unfortunate Stage 3 diagnosis, I did very well through chemo and thank God am still here to tell about this. To quote my oncologist and surgeon, "Nothing I did or could have done would have prevented this." The ONLY early detection I would think has any relevance - tuning in to your body and getting something checked out. There is NO family history of any pancreatic cancer and there would have been absolutely no reason for me to undergo a battery of any kind of early detection tests. I don't really think this article is helpful.
52
@Elizabeth Janes. You are lucky. Be grateful for that, not smug, and don’t criticize this doctor for telling people that these affordable germ line tests can help.
29
@Elizabeth Janes,
God bless you! Kindly could you also tell the readers if your genes, diet, weight and life style put you at risk for this dreaded disease? And also it will be helpful to know your age. It seems certain age group is more at risk than others. Thanks very much!
5
@anonymous
I am 62 years old, live a wonderful, healthy lifestyle - do not smoke, do not drink, pretty normal weight-wise, give or take 10ish pounds. I live in a large suburb of Detroit and had access to absolutely top notch medical care and doctors who are exceedingly experienced. As I said in my post, my doctors ABSOLUTELY insisted on telling me that nothing in my life caused this horrifying disease. Today, I am super healthy, super happy and live an even more grateful life. It's been a brutal road with an incredibly long surgical recovery. The Whipple is a HUGE operation and takes a toll, but, I made it through very well. I lost a lot of weight and food still isn't too delicious although I eat anything I want and have relatively few issues. I am still dealing with some side strange effects of chemo. I did not have radiation. I think that if anything I could help anyone with about this whole experience it would be that trust in your doctors is absolutely key. I WAS lucky to have incredible doctors in my corner who are always accessible to me. If you don't love docs and don't trust them, find others that you do. I am sure that some of the information in this NYT article is helpful, however, in my experience, for me and my family, particularly, I do not feel that all the available tests and the negative effects that so many can cause are worth it.
15
Despite this rather optimistic viewpoint from an oncologist at the end of the diagnostic and therapeutic funnel (and who has many tools and therapies at her ready disposal which the average oncologist and patient won't have for years, if ever), pancreatic CA is still the one whose description in any article in the literature almost always starts with words like "dismal".
Most patients in the real world, as the doctor well knows, are diagnosed with pancreatic CA only when symptoms occur: and by then most have locoregional or widespread metastasis.
This cancer is grouped under the rubric "silent cancer" for a good reason.
37
My husband died from advanced localized pancreatic cancer exactly 10 months after the diagnosis. He opted for 2 aggressive grueling forms of chemo, followed by 5 weeks of daily radiation treatments, which caused major problems in surrounding tissue weeks later, as most radiation does. My point is that his predicted life span was the same, 5-10 months, whether he had all the treatments or none of them.
81
Thank you for your post, @marywho.
Your final sentence contains hard won wisdom.
I am sorry for your loss and for what you both went through during treatments.
8
Dr. Simeone - I fail to see how screening and genetic testing are indicated at this point in terms of the knowledge available to treat this condition, let alone the quality of the outcome should one be treated. Many specialists want older individuals like myself to have follow up screenings for a wide range of conditions that might/might not turn into cancer. At my age, I'm not interested in spending thousands of dollars of taxpayer dollars (I have Medicare) and worry and fret getting CAT scans and so forth all the time.
Where is the voice of reason in all of this?
34
@Ellen, because if you haven't seen it up close, Pancreatic CA is a horrible way to die. And, it hits younger people. And, the surgery is curative when caught early. (retired ICU RN)
23
@Ellen. Not everyone is as old and ready to die as you are and a test that costs less than $300 is good to know about.
32
@Sacajawea
I am not "ready to die", as you state. I just am not interested in living a medicalized life. See Barbara Ehrenreich's latest book on the subject.
3
Pancreatic cancer has been the bane of my family having killed my mother at 55, my oldest brother at 40, and my middle brother at 59. I have a 1 1/2 centimeter cyst on my pancreas that has been checked for the last 15 years with MRIs and it thankfully has not grown. My and my brothers blood has been in a study at the University of Toronto as they felt that our family history was unique but nothing has come of it. So my fingers are crossed and I appreciate every day of health that I have. My children will have to start getting checked when they reach the age of 40. Hoping they take after my father who lived til 93.
72
My husband, a physician, died from pancreatic cancer. In retrospect I believe he had a symptom which preceded diagnosis by several weeks, namely that his hands, warm to my touch for half a century, became cold. Neither of us attached any significance to this change at the time. Now I wonder if it was an early warning sign. If so, public awareness might lead to earlier detection.
24
@Susannah Marks
Unfortunately, those kinds of symptoms, or “early warning signs,” are still early signs of advanced cancer, and not signs of early treatable disease. There is a difference. The only way currently to cure this disease is to find it long before it advances, usually found on CT or MR when looking for something else. Having practiced for 45+ years, I have seen a lot of CT’s and MR’s ordered because the radiologist thought he/she may have seen something abnormal while looking at a study ordered for another issue, resulting in a series of tests with lots of expense and radiation for naught. With this disease symptoms = advanced disease.
This research looking for early detection is great, and needed, but the methods discussed should not be applied to the general population at this time. The article does not belong in the lay press.
48
@James Lo Dolce, MD. Why should an article about a simple blood test that costs less than $300 not be in the lay press? It’s not like expensive prescription drugs like some doctors get paid to proscribe. If ALL blood tests were affordable there would be more early detections of cancer.
22
@Sacajawea Its not the cost that's the issue. Its the additional tests and treatment that may have significant side effects. This looks promising but they need more data to show that the benefits outweigh the risks and that patients screened this way actually live longer.
8
No place in the article does Dr. Simeone present the most important information:
Data demonstrating that early detection increases survival rate, after accounting for lead time bias. She refers to the surgery as "life saving", but presents zero evidence that it is. It is very frustrating to read an article like this that is so shoddily argued. Perhaps early detection does save lives -- but my skepticism radar is activated when no clear evidence supporting that conclusion is presented.
45
Dr. Simeone's "we have found that 15 percent had a germ line mutation that probably contributed to their risk of developing the disease" should be interpreted with a grain of salt.
Her data says that of all pancreatic cancer patients, she finds a germ-line mutation 15% of the time. However, that's not the question to ask.
The question to report is, of all people without cancer, how many present the germ line mutation now, and of those, how many develop pancreatic cancer?
While the 15% finding is interesting and might show some correlation, it certainly does not answer much about prevention.
42
Interesting information and some hope for a devastating illness but the evidence form the two studies linked in this story are insufficient to support a recommendation for routine testing and screening even in high risk individuals. Before making recommendations for screening in otherwise healthy individuals we need evidence that screening actually reduces all cause mortality compared to an unscreened group.
Some of these patients had borderline pathology and underwent major surgery. If this approach had been performed in a larger group its probable that there would have been some adverse outcomes.
While the results are promising It's unclear from the existing research if screening and treatment result in better long term outcomes compared to a group that was not screened. More research should be done before making recommendations.
18
@Dr. M
Thank you for making this point. Early detection is a noble goal that unfortunately often has too many bad consequences. Finding "incidentalomas" and other minor growths that would never have made themselves known and "curing" them distorts statistics and instills unnecessary fear. The human condition is mortality.
17
@Dr. M
How are we going to know if we can come up with screening results " even with high risk " cases especially with with high risk IF we do not screen ?
What would rather have better screening tests , that may lead to earlier detection or late stage detection?
@HB I am not suggesting that these effort be abandoned. What I am saying is that this approach needs to be studied properly before it is recommended as a regular screening protocol. We don't know if this approach would extend life or shorten it based on the current data. This looks very promising but early detection doesn't always lead to better outcomes. It can but it can also have no effect , or in some cases result in worse outcomes. Let me give you an example.
Let's say we have a cancer for which the available treatments are only moderately effective even for early stage disease but are associated with significant morbidity and mortality. If you screen patients you will find more early disease but perhaps also some cases that are borderline and for which the progression to aggressive disease may be unclear. Some of these patients will be referred for aggressive treatment and subject to the associated side effects and risk.
Again, I am not saying screening is bad. Current screening approaches for colon cancer and cervical cancer have proven highly effective. I am only saying that we need good evidence that the benefits for any particular screening protocol outweigh the risks before we make any screening recommendations that may affect millions of people.
8
The real truth is that pancreatic screening ( DNA test and CT /MRI scan) can't save lives. That is why doctors don't recommend CR or MRI to find early cancer for pancreas, brain, liver, stomach or else, no matter how much money you can afford. Every medical procedure could have substantial harms with benefit. You can't have coins that have one side only.
25
A lot of people don't have $250 laying around to pay for a test, let alone one which has only a 15% positive rate for what "probably" contributes to the risk of developing the disease. Financial inequality strikes again.
16
Although many people don’t have $250 laying around for a germ line test, it is relatively inexpensive. My lab charges about $1200 for a normal blood test.
3
@Sacajawea you are debating the wrong subject then. time to get back to the real issue: affordable universal healthcare. What needs to be shrunk is the exploitive fees of doctors, labs, big pharma, insurance companies etc
14
@Eucerin
In this instance, if you don't have the 'huge' $250, it doesn't matter anyway.
So now 'financial inequality' means those who have 250 bucks in the bank....
I had that in high school in 1965.
6
Gastroenterologist here. This is misleading:
"Most of those who do not get help until symptoms arise are unable to have lifesaving surgery. Without surgical resection, there is little hope of long-term survival. For all patients, the five-year survival rate is only 9 percent."
Surgery is rarely life-saving, no matter how early. That 9% number is optimistic and does include surgical patients. The long term surgical cure rate for pancreatic cancer is incredibly low.
Screening for pancreas cancer is expensive, carries risks, and is currently unlikely to change outcomes.
72
@Peter
Thanks for your work. And thanks to the author as well.
6
Doc buried the lede: that 9% 5-year survival.
And it's even more complicated...other genes play a role...like CDKN2A. I think for that one, they're still looking at a total of three pancreatic cancers and/or invasive melanomas [not stage 0, Level 1, "in situ"] on one side of the family to reach the 10% pretest probability point at which many experts consider it worth testing. It's rarer...and I'm sure there are other genes....
Would have been more helpful if there were presented some evidence-based or at least broad-based multi-expert national consensus about what constitutes high enough risk that an individual should be tested.
24
@Lisa,
Insightful comments.
Thank you.
2
When my mom was diagnosed with stage 4 pancreatic cancer last October, they told her to sign up for hospice and go home to die. They didn't even offer her any kind of treatments or any kind of procedures because they said nothing would work anyway. She passed in February. I'm petrified that I will be next. It's good to know that there are some possible early detection strategies out there.
32
@Mara C so sorry for your loss.
11
For whatever this is worth, I have had a CT scan every year for the past 5 years because of an abnormality on my pancreas. So far, nothing warrants any further action except for the yearly CT scan to monitor this abnormal growth. So, in a sense, my scan could be considered "routine" in conjunction to my situation. But again, it's only because something had been detected five years ago. I think that is a huge difference in the terminology of a "regular routine CT scan" vs. having a yearly scan to monitor a specific issue.
19
@Marge Keller How very frightening for you to face this annually. I have anxiety over my annual mammogram and the possibility a CT finds growth in your case is an overwhelming thought.
4
@Marge Keller
I have scans every two years for the same reason and with the same result. They said, after the last one, that the tumors had shrunk a bit. How much is not known! I’m not sure why I bother anyway. Unless I’m misunderstanding what I’m reading an hearing, if the cancer progresses, the whipple surgery doesn’t cure it anyway. Is that your understanding?
4
@pat simons
Hello Pat,
Thanks for your comment. The fact that your tumors have shrunk is GREAT and optimistic news. I would be doing a "happy dance" on top of the nearest bar with an ugly lamp shade on my head.
In my case, there has been no change so I continue to take that as good rather than bad news.
My doctor told me the location of the tumor on the pancreas will determine if surgery is an option or not. In the case of my next door neighbor, her tumors where in the larger area of the pancreas and surgery was NOT an option for her, but if the tumors had been in the "tail" thinner section of the pancreas, they could have been removed by having that small section of the pancreas removed as well.
Not all pancreatic diagnosis's are the same nor should be viewed alike. I think the fact that your tumors are shrinking and scans are being done to monitor this situation, automatically improves your odds.
I wish you the very best of luck and sincerely hope your tumors continue to shrink . Stay well and optimistic.
9
The author should have presented the information the information that the U.S. Preventive Service Task Force draft recommendation statement in 2019 (pending review of open comment period which just ended) is as follows: "Using a reaffirmation deliberation process, the USPSTF concludes that there is no new evidence that warrants a change in the prior D recommendation and reaffirms its previous conclusion that the potential benefits of screening for pancreatic cancer in asymptomatic adults do not outweigh the potential harms." A final official statement is expected soon.
28
@MW. I wouldn’t wait around for the public comment period to close and an official statement by the US Preventative Service Task Force to lead my medical decisions. A germ line test does not seem to be harmful and it’s relatively affordable so why is everyone slamming this article?
6
@Sacajawea What I'm taking away from the skeptical medical professionals who have commented here is that the germline test alone may not *definitively* tell you that you have cancer or you don't. And once you have a possibly inconclusive result you are then led down a rabbit hole of much more (expensive) testing and/or procedures that may end up showing you're actually OK.
(My own experience with the inaccuracy/ineffectiveness of mammography -- a multi-billion dollar medical complex -- come to mind here.)
I appreciate that in a research case of one (that being you), it is tempting to say "Yes, go get tested!" But when you are talking about the population at large, demanding more comprehensive research is the ethical response. The medical establishment should avoid creating undue anxiety or, even worse, a false sense of security.
3
Your excellent summary, @Jodi, definitely explains the dangerous, to-be-avoided, nerve-wracking cost of inconclusive "rabbit hole of much more (expensive) testing."
2
The first half of your piece sounded so hopeful. But you lost me when said that only 15% of those tested had the germ line mutation. And that you can't identify a cause in half of the patients.
20
Everyone I’ve known who has had this dreaded disease has died of it fairly quickly. One went to the Mayo clinic every year for their annual university physical. (Person was a marathoner.). You would think that would be a great insurance policy.
The second person was a nurse in a endocrinologist office that was in a teaching hospital.
What I have been told is the only people who survive are those who do have early detection and that is because their illness is found while the doctor was looking for something else.
82
Can symptoms be detected earlier if you regularly exercise to your limits and notice a drop in performance, or are they always subtle until they are deadly?
7
@Watercannon My mom engaged in high-intensity exercise nearly every day of her adult life, including on the day she was diagnosed with stage 4 pancreatic cancer during a routine physical. She died three weeks later.
8
@Watercannon
Usually the latter - and often they are nonexistent up until they manifest themselves.
1
Routine CT screening? I’m very glad RBG survived early pancreatic cancer but as a family physician for over 25 years I can assure you CT scams are not routine. They confer a lot of radiation and should be used specifically and cautiously as a diagnostic tool.
79
@Emily Kane : I'm with you there but for a lot of physicians CT scans are routine with no consideration of other diagnostic tests & radiation load.
17
@Emily Kane I think the article left out the fact that RBG had colon cancer prior to the pancreatic cancer diagnosis. The routing CT scan was routine for her situation - following up on the colon cancer.
54
RBG was a colon cancer survivor when the pancreatic cancer was detected. Perhaps the CT scan was a routine follow up test for the colon cancer.
5
Regarding this:
“Too many people misunderstand genetic screening. They think that mutations in the BRCA gene are common only in people of Jewish ancestry and relate only to breast and ovarian cancer. In fact BRCA mutations are present in many ethnic groups and greatly increase the risk not only of breast and ovarian cancers, but also of pancreatic cancer.”
I’m not sure that’s due to a misunderstanding (thereby placing the failure on the “people”). I read a lot about health in general and women’s heath in particular. I have done genetic testing, and I asked for my BRCA results. Even with all that, I had no idea BRCA mutations had anything to do with pancreatic cancer. This is a failure in the dissemination (reporting) of health information. Maybe we should rethink dividing health reporting into women’s and men’s issues.
21
If you detect cancer a year before you become symptomatic, of course your 5-year survival rate goes up - you spend one more year knowing you have cancer!!
The lack of clinical evidence suggests to me, that like many other cancer screening, early detection will spend more money on healthcare without necessarily improving the quantity or quality of life.
42
@Tom Stoltz
Lead time bias is indeed a very good point.
But Pap test and other HPV tests now are making cervical cancer deaths almost obsolete in this country.
Colonoscopy really works.
Reduces death rates. (And frequency of test is adjusted to individual and family history.)
Breast cancer screening almost certainly contributed to 20% reduction in death rate for that cancer.
Lung cancer screening for heavy smokers reduces death rate - though many false positives so not trivial.
One size does not fit all even for screening.
ACS says prevention and screening together most responsible for decline in cancer death rates in US. (Of course declining smoking rates may be biggest effect.)
11
@Nancy
I agree that "One size does not fit all even for screening", but history seems to indicate that we blindly accept that early cancer detection should save lives, but when clinically tested, as often as not, screening and aggressive treatment is no better than doing nothing, but it universally cost more and generates more stress and pain.
I will agree with you on Colonoscopy and Pap, but anytime universal mammography is objectively evaluated, the social benefit is dubious, and the research is automatically labeled as "anti-women".
As for PSA testing, I refuse, until there is evidence that it actually extends useful life. My uncle was tested, treated, and ultimately died of prostate cancer. Statistically, it is just as likely he would still be alive today if he wasn't treated.
And last I read, chest X-rays looking for lung cancer in the '60s caused as much cancer as they prevented.
1
Not fully convinced people should seek medical advice on an online forum. Misinformation can be much worse than no information at all.
16
You know, you just cannot "catch" everything early. I am a 20 year survivor of late stage high grade ovarian cancer. In hindsight, there were some symptoms...that's "hindsight." People do make it through these horrible diagnoses......NEVER take away HOPE. EVER!! It's a tough road and you need hope, and resilience.
57
@Daisy22 so glad to hear you a long term survivor. My wife noticed bloating about six weeks before seeing her doc, then diagnosed as a late stage ovarian cancer. After two surgeries and three rounds of chemo she died at 4 years and three months after initial diagnosis. She did not have the BRCA mutation so our daughter and my nieces are still in the normal pool of risk. Why am I writing this.... almost nine years after she died, We all miss her delightful being and buoyant spirit. Would that we were more to early indications of, “something’s not right.”
40
@Daisy22
There are very effective treatments for some cancers. These include many ovarian cancers and testicular cancesr.
I'm not sure exactly what you mean, however, by saying that people need hope and resilience after being diagnosed with an adenocarcinoma of the pancreas.
The fact is that numerous studies have shown that in the absence of effective treatment, having hope and resilience by themselves makes no difference whatsoever to the outcome after a diagnosis of any sort of cancer.
What makes a difference is effective treatment. In the case of stage IV pancreatic cancer, which killed my father six months after diagnosis, there still is none.
In the case of agressively metastosising melanoma, which killed my wife's mother less than a year after diagnosis, at the time there was none.
Cancer patients need efficacious treatments – these are what bring hope.
9
@Robert Fishbone
They may have lynch syndrome. It causes ovarian and other gynocological cancers. Have them ask their doctors about looking at family history on your late wife's side, especially if anyone in her family has ever had colon cancer. It's diagnosed through a simple blood test. I have lynch and get preventative screening every year.
4
The good Dr. proby knows that the danger with this approach is the ever-present false positive. This is becoming far too prevalent in this day of an MRI at every corner and 'brand new' genetic tests that can be incorrectly translated in probabilistic deterministic predictions.
Some simple questions - using her strategy - how many patients will be exposed to medical tests and interventions that degrade the quality of life to catch the one case of Pancreatic cancer?
Of that one case caught - what is the improvement in prognosis for it?
We went through this whole horrible debacle with Prostrate testing - do we have to repeat it every decade or so?
13
The media has done a horrible job at distinguishing Steve Jobs cancer. It wasn’t really “pancreatic” cancer, it was Neuroendocrine cancer that started in the pancreas. It’s a rare disease but distinct - with much better treatments and survival stats than standard pancreatic. Aretha Franklin had the same. Yet 95% of the articles about both of them said “pancreatic cancer”
With that said, I’m glad there is increased discussion of this horrible cancer. I hope it draws more money and attention to developing a detection test. So much progress on so many cancers, except this one. And such a critical part of the solution is developing a test for detection.
84
@Mike My question is: What kind of pancreatic cancer does Alex Trevek have? Does he have NET (Neuroendocrine) cancer or the exocrine type? As someone who has been living with NET in my liver (primary unknown) for 18 years, I can assure that there are siginificant differences. More info is available here: https://ronnyallan.net/2018/11/15/pancreatic-cancer-vs-neuroendocrine-tumors-of-the-pancreas/
1
I am a 70 year old male whose father died from pancreatic cancer in 2002. Dad is now permanently stationed at Arlington National Cemetery. I am very lucky we have Roswell Park Comprehensive Cancer Center (formerly known as Roswell Park Cancer Institute} here in Buffalo, NY. They have been monitoring me for the past 10 years exactly as the author states: a yearly cycle of EGD/EUS, followed 6 months later by an MRI/MRCP. They did find some early stranding in the main duct-quite an early diagnosis.
I have lost several close friends to this terrible disease. The cost in money and time to monitor for pancreatic cancer is well worth it to me. Thank you, Dr. Bain and his most wonderful PA, Leanne Ortalano. They have both given me hope and succor. 10 years since diagnosis, planning on at least another 10 years. Go Bills.
64
This is an article that does not belong in the New York Times. The comments of multiple radiologists clearly question the wisdom of even screening high-risk patients. Certainly studies may be warranted in screening these high risk patients. More likely the reason this article was printed is in our cultural refusal of the acceptance of death. If this physician wants to proceed with studies please go ahead under the proper supervision . I think reader should know Is that this is no means the standard of care.
65
@David Sharkis
Perhaps medical progress is made when we decide to raise "the standard of care" and make new discoveries along the way.
14
@David Sharkis, I am at high risk for several reasons, including pancreatic stones that can only be removed by removing half my pancreas and my spleen, and the resulting chronic pancreatitis. I am most happy to take the risks of radiation if it will help prolong my life should I come down with this horrible disease. This is my sixth year of these tests, some annually and some every six months. I am now considering the surgery because a cancer marker blood test has a slight elevation, and to help my pancreatitis, as that does sometimes turn cancerous. I presume you have never lost a loved one to this horrific disease. I have. My brother died after surgery within a month of being diagnosed after ignoring warnings something was wrong for months. While you may be correct that testing high-risk patients is not the current standard of care, I rest easier knowing that it is mine.
12
@Shirley
You might better to consider, why screening is not standard of care; is not about radiation risk or money related, is because of false-positives and over-diagnosis; in short, screening can cause everlasting unnecessary tests, more surgery, more chemotherapy. That is why most cancer screening only changes the cause of death but never increase the probability of live longer.
5
An annual MRI or endoscopy????? That's not casual screening.
49
The author’s opinion about imaging screening is not shared by consensus expert guidelines— which are evidence-based.
NYT, please do better.
60
Please be specific; otherwise this article is useless:
What screening does he recommend? A CAT scan every few months for the general population? The cumulative radiation dose would be unacceptable. Is there any other screening?
16
@Jonathan Katz
Read the article.
1. Author is female
2. Referring to high risk patients
Etc.
13
A possible alternative to cumulative CT radiation doses is the comparatively safe MRI, which relies on magnetic fields as opposed to high-intensity Xrays.
6
Who is approved for "routine" cat scans? Certainly not the majority of us.
21
Justice Ginsberg was already a colon cancer survivor when she was diagnosed with pancreatic cancer. I don’t know the details of Ginsberg’s case, but many cancer survivors have CT scans as part of their routine follow up care, and I doubt doctors would drop their vigilance for a Supreme Court justice.
9
You should also note that many common prescription drugs list pancreatic cancer as a side effect....😳
12
Really? Or do they say that some people who were taking the drug were diagnosed with pancreatic cancer? There's a huge difference.
18
Intraductal pancreatic cancer (the most common) is notoriously good at spreading (metastasizing) early— even before the tumor itself is large enough to radiologicaly visualize. Tumor cells can be found in our circulation in more than 20-30 % of patients that have small tumors amenable removal— hence the low cure rates. While there are subtypes of pancreatic cancer that are much less lethal, the reputation of this disease is well deserved. As such, The importance of developing the currently elusive genetic and/or screening testing that detects this cancer BEFORE IT SPREADS (or even occurs) is the authors best point.
Consistent education about disease, in this case pancreatic cancer, is so important. It is incumbent on those of us in medicine to not only keep up to date, but also to consistently deliver that message to the public— one that is complete, factual and up to date. It can only help dissolve the myths and misunderstandings that arise around — well, just about everything.
40
The writer seems to misrepresent research findings. The conclusion of the manuscript that the author cites in support of screening was that the data are not clear about surveillance screening for familial forms of cancer. In other words: knowing that your relatives had cancer should not (according to the manuscript that is cited) be recommended as an evidence-based method to do surveillance for, and treat, pancreatic cancer, yet.
There were serious and acknowledged scientific issues with that manuscript (for example, there was no control group!).
This is not to say that screening is a bad idea. All I am saying is that the statement that “screening of those at high risk is of demonstrated value” is incorrect. Maybe a better phrase should have been “studies suggest that screening may be of value, but this has not been fully proven yet.”
24
The best thing we can do to improve cancer rates/death rates with pancreatic cancer and in general is to get the obscene profit motive out of curing it.
While present day medicine has made some progress, the biggest benefiters are the billionaire HMO/Big PHrama execs. and the scammers who use every known scam including charity to make money off of it.
32
I’d tend to agree with many of the commenters that this piece offers false hope to patients with this disease. It does, however, serve as a nice advertisement for NYU.
38
Sigh.
According to the American Cancer Society, people at increased risk should consider screening but people at average risk should not, so the doctor's advice in this column is reasonable. The problem is that many people are incapable of understanding this detail and will show up in doctors' offices, like my office, and want inappropriate testing. Then I and other doctors like me will have to spend 150 seconds or more of a fifteen-minute 5-problem visit explaining why it should not be done. Or we could just send the patient to a genetic counselor and increase the country's health bill by a couple hundred or a thousand dollars for no good reason and save that precious 150 seconds.
The author is seeing only a tiny part of the elephant, as is the habit of sub-specialists.
Another brick in the wall for family medicine....
https://www.cancer.org/cancer/pancreatic-cancer/detection-diagnosis-staging/detection.html
29
@vbering
...or spend more than 15 minutes with each patient, and consider education part of your normal duty to your patients. What forces you to not go over 15 minutes? Or to education that takes over 150 seconds? That sure does seems to be part of the problem with health care, especially prevention. There are neither health educators in any of my doctors' offices nor are doctors willing to resist cramming more and more people into their practices.
14
Doesn't say much, except even with early detection you get a 5 year survival rate at most. 5 years of chemo torture until you are so weakened from tests and procedures, you finally succumb.
Early detection makes you a Cash Cow for doctors, hospitals and the drug industry.
Forget "early detection."
The choice is to feel healthy until the worst,
or prolonged agony.
33
@delores- As with a lot of cancer screening protocols, patients are not living longer with cancel, they just know it longer. Of, course it should be up to the patient to decide how much treatment to take, but cancer treatment is BIG business. Many patients are pushed into extensive treatments when it is really false hope.
32
What a horribly misguided comment! Early detection means early resection, giving what is described as "local control", before the cancer metastasises. There may be a course of chemo at that time. What follows is years of regular follow-up to ensure that any possible recurrence is not missed. This is usually accomplished with scans and/or bloods, depending on the type of tumor. People who have "five years of chemo" are those with incurable disease which has metastasised. Most of them are happy to have their treatment, because they're happy to be alive. Perhaps if you're in the same unfortunate position one day, you may understand.
18
I have known 5 physicians over the years who refused treatments after being diagnosed with pancreatic cancer, including one prominent oncologist. I am a physician, and knowing the disease and its course and treatments, I would chose the same.
37
When I read an article like this, I can't help but ask what spending 5 billion dollars could do to help find a cure instead of spending it on a wall?
137
"Type 2 diabetes, which doubles the risk."....Does type 2 diabetes really double your risk or is it any early indicator of the disease.
13
@W.A. Spitzer - Type 2 diabetes is an early indicator of Type 2 diabetes. That some Type 2 diabetes is genetically based rather than life-style based could suggest that a genetic element is shared between the two diseases.
11
RBG’s pancreatic cancer was found by serendipity- it was found during routine CT follow up for her previous colonic cancer. Dr Serenditity is very helpful at finding early disease
46
Before insisting, as the authro suggests, that your physician do one particular test that you have read about somewhere , and that is hard to interpret , consider seeing a genetics counsellor who will take a detailed family history and be in a better position than you are to determine, given your family history, what tests if any might benefit to your health.
16
After having an MRI for another issue, the doctors found some cysts in my pancreas. The doctor at NYU recommends yearly MRIs with contrast. So far they are non cancerous. Now I’m worried. Should I look into having this removed? Is this an early warning sign? Everything else I the MRI was fine and this is a great hospital.
8
@Jill, Rely on your doctor, maybe get a second opinion. Don't believe anything you see/hear on the internet!
16
@ Delores, your point is well taken that we might do more harm than good by having all these hospital procedures due to the lack of hygiene practiced by staff.
In a pre- surgical handout that I was given recently it recommended asking all the prep nurses if they had washed their hands before inserting IVs or doing other such procedures before surgery.
I did. And the prep-nurse, who seemed competent, told me she brought her “own
hand sanitizer” because there was seldom enough in the pre- surgical area! This alarmed me for the obvious reason, but also because I know that hand sanitizer poses it’s own problems with build up, and is ultimately not a good substitute for washing your hands thoroughly with soap.
That prep- nurse did lather up in front of me with her hand sanitizer, before putting on vinyl gloves (since I’m allergic to latex.)
However, because I was under anesthesia for the surgery I had no way of policing the other staff’s hands —including those of my trusted surgeon— who were digging inside my body.
The most alarming part of the pre-surgery advice for me was the implication that lack of hygiene was enough of a hospital issue that printouts were made for the surgical patients, ensuring that the patients become the ultimate hygiene-police of their health care providers.
And, the message was: it is up to the patients to make sure that their health-care providers are following standard hygiene protocol— because they may not be.
26
Just last week, I told my doc's PA that "Dr. Google" said my symptoms COULD BE due to anxiety, depression, or something else I already forgot.
She laughed.
1
I am two and a half years post Whipple and take scans and blood every few months. I'm good right now and my doctors are optimistic. I am on Medicare with an HMO Medicare Advantage plan. I paid zero for my care here in SoCal. The problem is insurance like mine is the exception. My wife and I ballpark estimate I got around a half million dollars of care. No one can afford that.
93
@Geoff Fox - I hope you're meteorologist Geoff Fox!! We miss you in CT and I'm ecstatic to learn you're doing well in CA. My husband is also two and a half years post-Whipple, had chemo, and has blood work and scans like you. He's participating in a study of C19-9 marker research so maybe a blood test will exist to diagnose PC some day. We have Anthem Blue Cross and pay $50 co-pays non-stop -- they add up. ER visits can be as much as $500 -- and they add up. Our maximum out-of-pocket ceiling is $13,000, but with other care, we spend at least 20% of our household budget on medical care. My husband's doing ok and I'm grateful every day. Oh - and one more thing - Reader's Digest published an article about symptoms of PC a few years ago and my husband had one: an ache in his torso that went front-to-back. He happened to meet a g.i. with a sixth sense who told him he'd be getting a second endoscopy if the first one didn't show anything. That second endoscopy saved my husband's life because his cancer was caught at Stage II and was resectable. Be well, Geoff!
7
The good doctor writes: "New studies show that if you screen someone and find something, the odds that you can do surgery are 80 to 90 percent." In other words, keep looking until you find your next paycheck! If you are a doctor, everything looks like a possible surgery, test, prescription, or other billable procedure.
I'm not trying to discourage people from getting tested or seeing a doctor if they are so inclined. There may be some value in doing so for some people.
But I'm disappointed that this article does not focus more on diet as a way to prevent pancreatic cancer. Yes, smoking, drinking and obesity are real risk factors, but diet is another risk factor.
Dr. Michael Greger, the author of the best-selling book "How Not to Die" points to a large NIH-AARP study suggesting that consuming foods and fats derived from animals was significantly associated with pancreatic cancer compared to foods and fats derived from plant sources.
He also notes that eating chicken appears to be a significant risk factor. One study found that people who slaughter chickens have a nine times greater risk of pancreatic and liver cancer. (Smokers merely double their risk.) He also notes that the EPIC study, "which followed 477,000 people for about a decade" found "a 72 percent increased risk of pancreatic cancer for every fifty grams of chicken consumed daily."
As Dr. Greger explains, a plant-based diet can help to prevent many cancers as well as heart disease and other diseases.
18
@Dan Frazier Not so fast - my sister lived a mostly vegetarian life (organic from her garden) living on a hillside in rural Vermont. She got PC and died 18 months later, despite much of her own research and natural treatment options including coffee enemas, chinese herbs and 2 trips to Spain for alternative treatments. I would have loved to see her get early testing and treatment - she might still be here with us today.
41
@Steven Kopstein
Your reasoning is faulty. Medical risk analysis is statistical, meaning that the probability of contracting a disease changes with various risk factors. We can never guarantee that a person with no risk factors at all for a disease will not get it. There is no certainty.
Every day some people with no risk factors for smoking-associated lung cancer get that disease.
13
@Dan Frazier
Next paycheck?!
This doctor is a university employee and is almost certainly on salary. She's an expert sub-specialist, and, far from looking for her next paycheck, is probably having to turn away patients right and left.
I suspect you are unfamiliar with how medical school professors are paid.
20
I’m a breast cancer survivor and found out I have the BRCA1 gene after I was diagnosed. My dad had pancreatic cancer and died from it after 18 months. I haven’t seen many people live longer than 18 months except Steve Jobs who somehow had a liver transplant after being diagnosed with pancreatic cancer. I think he lived for another 8 years.
I’ve been told my by doctors that insurance won’t pay for tests for pancreatic cancer because they are invasive and they’d only pay if you have the disease. I would think having the gene should be enough.
I would love to hear more stories from those who live more than 18 months. In my mind it is a death sentence and my dad would say if his doctors didn’t tell him he was sick he wouldn’t know.
My kids may not have children of their own to prevent the gene from spreading or will have envitro to have the embryos tested and this nasty gene can stop being spread in my family line.
I hope more testing is allowed for this terrible disease.
20
@Cara , It is the BRCA 2 mutation that has the increased risk of Pancreatic Cancer. There are no consensus screening guidelines for those with just a family history of pancreatic ca, for those with just BRCA 2, or those with both. As someone whose spouse had BRCA 2 and died from Stage 4 pancreatic cancer, I would advise that families in any of these cohorts seek advice from a center of excellence. Places like SCCA in Seattle, MD Anderson, Memorial Sloan Kettering, Brigham and Womens , Northwestern University in Chicago, etc. An individual can then weigh the pros/cons of screening and which approaches they might be comfortable with. The Pancreatic Cancer Action Network is another source of info. The American Cancer Society is also a proven, reliable source of valid information.
7
@Cara
My brother is a ten year survivor who was given 10 months to live by his doctor before his Whipple, followed by chemo and radiation. He was alerted by GI issues, which his primary care doc discounted until he developed jaundice. After the surgery, he turned his life around, changing his diet completely and removing stress and toxic people and situations from his life. Meditation and visualization are also things he credits for his longevity along with the grace of God. He counts every day as a gift and has been an inspiration to many.
23
@BB
I am so glad to see that you mentioned the fine hospital of Brigham and Women's in Boston in your post - one of Harvard's research hospitals. The good docs at that hospital saved me from breast cancer - saved me from terrible diagnoses and treatment here in Oklahoma - and just plain saved me. They are some of the hardest working, modestly-paid, sainted humans on the planet. I love them all.
5
As a BRCA carrier from a family of BRCA carriers, knowing the risk didn’t help. 43 year old brother was checked regularly and complained about GI issues - but scanning didn’t show it. 6 months later, it showed pancreatic cancer had spread everywhere.
I wish some kind of blood test could be found. I’ve seen so many headlines with “early detection” lead-ins that end up being meaningless. I’ve come to believe CT scans annually are the only way semi-reliable method of early detection - and even then, it requires a good radiologist who knows what to look for. I’m willing to take the risk of radiation exposure - and out of pocket cost - as I’ve lost too many family members too young despite knowing our risk.
31
Imaging is not going to be the screening tool of the future. Liquid biopsies will. This is a fancy way of saying that we are very close to developing diagnostic tools which will detect tumors by a simple blood draw.
The paradigm of waiting for a disease to show up on scans and then hoping we cut it out completely - or blasting residual disease with tailored therapies will seem antiquated in a couple decades, maybe sooner.
Rather we will enter an age where constant inexpensive monitoring of ones blood to detect all sorts of disease at a very early and curable stage will be the new normal.
I won’t give specific company names but just google “liquid biopsy” and enjoy reading about where we are headed.
19
As a PhD clinical molecular geneticist, this medical advice is very interesting to me. I wonder, though, whether it is supported by guidelines (outside of Ashkenazi Jews) and whether it is third party reimbursable without a big to do with the insurers. These tests and their interpretation are not inexpensive. And, it’s not yet clear whether they save lives or even increase QALY’s. I’d like to see the data, the policy statements and the reimbursements converge. I don’t believe they’ve done that for Pancreatic Cancer Screening.
6
@Bert Gold
Precisely. Studies haven't been done. Universal screening is not ready for prime time.
Perhaps you are familiar with the PSA screening mess. As a doc, I am bedeviled by it daily.
It gets worse. No one knows the optimum breast CA screening strategy.
On the positive side, colon CA screening is pretty much nailed down, at least for now.
6
@vbering
Re:
"It gets worse. No one knows the optimum breast CA screening strategy."
I participate in the WISDOM study, which is trying to determine that.
As a scientist I would have given up annual mammograms years ago, but continue as I am assigned to that research cohort.
I don't want to mess up anyone's experiment and tg plants and microbes did not have to give consent.
3
Excessive testing and misdiagnosis is common for all the diseases. Most cancer treatments may prolong a patient's life for short time at a great cost, with a little benefit. Side effects of chemotherapy, radiation, and drugs are too high to be ignored. So just because something is available doesn't make it desirable. Generally it should depend on the individual and the family. Doctors, and others with vested interests should present a complete picture and options to the people affected by the treatment.
15
@Jack
Physician here. We do not present a complete picture because we simply do not have the time to do so.
A study a number of years ago in one of the family medicine journals stated that if doctors were to adhere to all guidelines they would spend 17 (seventeen) hours per work day doing that and providing care of chronic disease. Maybe we'd spend another 4 treating acute disease.
Complete picture presentation is not humanly possible for the medical profession. If American society wants that done, it must be done by a cadre of public health officials, perhaps at public forums. It would markedly increase total societal costs.
Don't hold your breath.
14
@vbering
Or we could go back to teaching basic science and Biology in schools again, so that patients could understand basic info including stats.
I do my own research, as a female Ph.D. scientist I am sick of being talked to like I am stupid.
What the author glosses over is that the vast majority of those 80-90% percent who are surgical candidates at the time the cancer is found in screening will still die from their disease. The 80-90% percent rate for surgery sounds good, but 90% of patients undergoing a very high-risk procedure "successfully" will still die within a year.
34
@james doohan
Where did you get those numbers?
We'd like the citations--from peer-reviewed journals only, please.
We're waiting.
6
@vbering Who are "we"? Do a little search.
9
A college, who was a well respected surgeon at the University of Utah and the VA and who treated pancreatic cancer, succumbed to it after ~ 3 years. If an expert in the field, who presumably was better prepared in recognizing the early symptoms, dies despite early intervention, how successful will "routine" screening be for the lay public?
15
In 1985 and 86 my aunt then my mother died of pancreatic cancer. I had others in my extended family with other forms of what we now know are BRCA cancers. At the time I told my Dr I suspected a link and, against his opinion, insisted on yearly mammograms at age 32. In 2007 the NYTimes published an article on BRCA testing newly available. I immediately contacted Northwestern in Chicago, mentioned in the article and where we lived at the time, and was approved for testing by their research facility. Yes I was positive, had my ovaries removed and 5 years later, after close monitoring, opted for a double mastectomy. Every year I have an EUS of my pancreas and thought I had my bases covered. But in 2014 I got the one cancer my Dr told me not to worry about as I had only 2% chance of getting it, Stage IIIC cancer of the peritoneum. Similar to ovarian, it’s in the lining between abdomen organs and fat tissue. Thanks to UCLA, major surgery and five months of intense chemo, I am alive today. In my mind, one can’t be too careful, get tested and get monitored. If you are of child bearing age, this is very important, as you can avoid passing on the gene through IVF selection. If you don’t pass it on, subsequent generations won’t inherit the mutation as this is not one that skips generations. It stops with you.
41
@Stefanie: I'm glad for you.....but you must be rich. Really....most people cannot afford to do what you have done.
8
No not rich, just lucky to work for companies that had excellent insurance coverage! I fully support Obamacare and campaigned for democratic candidates in the midterm elections. We all have to work toward medical coverage for all Americans, not just for those who work for companies that provide coverage. Currently, I am retired and am paying for private insurance which eats a good part of our budget. I am looking forward to turning 65 next year so I can join Medicare. That is not how we should be forced to think and live in one of the wealthiest countries in the world!
30
@Stefanie Your personal story is very impactful! Not only in how pro-active you've been with your own hereditary health issues but working diligently on health issues that effect all of us Americans -- we must have more egalitarian access to life-improving and life-saving medical treatment in our country. I've never been so happy to get older as this month turning 65 and now on Medicare!
13
Seems to me people go from feeling good to Stage 4 before they're diagnosed. Are there warning signs during stages 1 or 2?
16
@Marcimayerson Your point is correct. Pancreatic cancer is generally without signs or symptoms until it has reached a metastatic stage. Because of its location and early spread, it is generally incurable at diagnosis.
10
It is not possible to screen for every disease without bankrupting the health care system. Even with the genetic mutation, only a fraction of patients have it and only a fraction of those who do, get the disease. Until you can come up with a relatively inexpensive test like the pap smear was to cervical cancer, these involved and sometimes invasive tests are pointless. I know people will say their loved one was tested and lived but like all other screening tests, it doesn't mean everyone else should be subjected to the test. Like the PSA, mammography and even colonoscopy, what seems like the gold standard is not and leads to unnecessary procedures.
12
PSA is a blood test, which makes it much easier to perform and pay for than the other expensive diagnostic tests you are thinking of. Also, once a PSA result hits a certain number, there is no question that you have a problem. PSA has and does save lives. My Dad got the idea to not worry about it from the discussions saying that meb worry too much when they have questionable numbers in the gray area. My Dad later died of Prostate Cancer, his number a few months before unexpected extreme weight loss and diagnosis were above 6000. As a daughter, I would much rather worry for a few days or weeks and celebrate a false alarm than what my Dad and our family went through.
7
@S.L.
An elevated PSA caught my husband's prostate cancer. It was his first test at age 52.
Watch the broad brush statements, please.
I applaud the authors work. But from her own statistics 85% of people do NOT have a mutation to justify intensive screening. Yearly scans and EBUS is not reasonable for the average person and they are the ones most likely to develop pancreatic cancer.
And many pancreatic cancer patients have no lifestyle risk factors -obesity, Type 2 diabetes, smoking.
So it continues to go undiagnosed until later stages.
12
As I understand this, genetic testing can only confirm the existence of a genetic mutation, not rule out the possibility that additional/different mutations are associated to a risk. So, from the screening point of view, when your doctors suspect some family risk, the genetic test doesn't make any difference unless you have a specific known mutation. And, as several doctors have mentioned in the comments, some cancers are aggressive, so being screened every 2-5 years is like playing the lottery. Very small odds that you will find something at an early stage. With some family history suggestive of Lynch syndrome, I looked into genetic testing. at $4-5k out of pocket if not covered, I opted for a 10 day cycling trip in the Adriatic coast. Before we die, we need to live a little.
33
If you are diagnosed with cancer at a young age, and diagnosed a second time afterward, insurance companies generally cover the the expense of genetic testing. Of course, you still have to survive your cancer.
5
We already have a life expectancy disparity in this country of 10-15 years (and that is just for for white males) depending on your years of education and/or your socioeconomic status.
How many people can afford this kind of care? It is pie in the sky.
Even if you can pay the bills, some people still have to work every day for a living or aren't near top notch hospitals.
This is medicine for the lucky top 10%.
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@Nancy
Yes, and that roughly corresponds to the Times readership, so it's to be expected.
The Style, Food and Real Estate coverage is so heavily skewed towards the top 10% (or the Lumpenbourgeoisie, as I like to call it) as to approach self-parody, so it's not surprising that health care coverage would operate under the same (usually unmindful) class assumptions.
Are you Meritocratic enough to matter? If not, go take some Oxy and die...
8
@Nancy: much of it is the insane high cost of meds, and the lousiness of Obamacare.
I have lousy worthless Obamacare with a $9000 deductible FOR ONE PERSON on top of high premiums.
Therefore, I cannot hope to have ANY kind of testing. And the few things they pay for -- a mammogram yearly -- if that test FINDS ANYTHING, you are on the hook for the entire cost.
I had my "free mammogram" last year. They saw some questionable areas, and wanted an ultrasound. None of that was covered, only the "free mammogram". Then the radiologist decided he ALSO wanted all new films, PLUS the ultrasound. Long story short, it ended up costing me $1100 for my free mammogram! (The only good part is they found nothing wrong.)
I was able to pay this, barely, but how about someone who is broke? who works a minimum wage job? who has no savings? who has no credit card to put it on, as I did?
THANKS FOR NOTHING OBAMA!
1
was the republican congress led by Mc Connell that stripped Obamacare of the coverage you needed , Obamafought for.
My brother-in-law died in November of last year, 11 days after being diagnosed with stage 4 pancreatic cancer. He was an obese type 2 diabetic who had recently lost a lost of weight, for which two of his physicians congratulated him. He also had a lifetime of digestive issues, so they didn't pay much attention when he complained about that, and allergies, so they didn't pay attention to his cough either. Although his diabetes had been stable for years with metformin, his glucose levels became difficult to control and they started him on Victoza three weeks before he died.
Eight days later, he drove himself to the polling place, walked in under his own speed and voted. Two days after that, he went to the ER because his sister noticed three toes on his foot were purple (one of the hallmarks of PC is blood clots throughout the body, which was the cause of his cough as well). The ER doc felt "something he didn't like" in his abdomen and did a CT scan: Stage 4 pancreatic cancer with liver involvement.
He was immediately admitted and by the third day was totally bedridden. They continued to run tests, but nine days after diagnosis he was transferred to hospice, where he died barely 36 hours later.
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@Marcy
My condolences.
19
I am BRCA2 gene carrier and wondered why there is no screening for this deadly cancer in my routine. They don't even screen me for breast cancer returning! After the terrible expense of treatment that successfully eradicated the cancer 13 years ago it feels as if if I get cancer again its not worth the investment. If early detection is life saving why is it not a worthy investment?
19
@claywakening
Please talk to your physicians about screening for the BRCA related diseases in addition to breast cancer- pancreatic cancer, melanoma, ovarian cancer, and prostate cancer in men.
19
I read the recommendations about the testing for genes and how it is not covered by insurance, that stood out to me. There is your biggest problem with any health care issue, be it cancer, diabetes, heart disease, or any thing else, who can PAY for it. The average person, working for a living, insured or not, may not be able to pay for this testing which might be life saving or the insurance might deny payment. Ruth Bader Ginsburg surely could afford it (and I am glad she could), Alex Trebek probably can, but the average person with or without risk factors probably could not. Yes we know risk factors, but there are many cancer patients who never had exposure to risk factors. I personally have known lung cancer patients who never smoked or had any exposures that would lead anyone to believe that they would develop that most dangerous disease. I knew well a 22 year old man who died of pancreatic cancer, his risk factor was his father's drinking. Cancers like ovarian and pancreatic are more lethal because a lack of symptoms that alerts. What's the remedy?Maybe genetic testing, maybe not. But one things does stand out in both the fields of detection and treatment, the ability of people to access affordable, universal healthcare irrespective of their income level. We are still in the age of ----if you are rich you get care, if you are poor you die. While the rich might also die in the end when suffering with these diseases, they have a fighting chance, the poor not so much.
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@linda fish
My husband died of pancreatic cancer after three and a half years of treatment. I later estimated the cost as close to $400,000 including chemo, radiation, surgery, treatment of pain and other side effects. The cost included travel to Seattle for radiation and surgery. The care was exceptional. We had cancer insurance and a good company insurance and still had bills to pay. Add-in having to retire early and the loss of income to our family, it was tough. Had we been less fortunate and not capable of affording care, he would not have made it through the first year. The extra time was a bounty for everyone. As a country we need to find a better system of health care for everyone.
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@linda fish
I am sorry that you feel the way you do. Money can buy many things, it is true. What it cannot do is buy an early, curable, diagnosis of pancreatic cancer. If one is "lucky" enough to be in the tiny fraction of people with pancreatic cancer who are cured it has nothing to do with how much money they have.
7
@Hank Gold
Money may not buy an early, curable diagnosis of pancreatic cancer, but it sure does buy the possibility of any early diagnosis at all. And it certainly buys better treatment for any illness than being without money.
25
A dear friend of mine (and chief of pediatric endocrinology at a major academic hospital) checked out abdominal discomfort (not pain) and was found to have intraductal pancreatic cancer with no involvement of lymph nodes or liver. Chemo, surgery, more chemo, he seemed good. But within a month, the cancer was everywhere. He died less than two years after "early detection". It is a cruel disease, but likely is different in different people. So, early detection methods are a reasonable goal. But, prevention would be good too.
98
Another radiologist here. Unaddressed is what frequency of screening would be necessary, given that pancreatic cancer is more aggressive than most other cancers. I have personally seen numerous instances where patients developed inoperable pancreatic cancer within a few months of having had prior normal imaging. For their cancers to have been caught while still operable, doing scans every month or two might presumably have been necessary. Unfortunately, I doubt that imaging as it currently exists will be the answer.
Also not addressed is that up to about a third of middle-aged people may have "cysts" in the pancreas, some of which may be considered precursor lesions to pancreatic cancer; for this reason, many of these individuals may undergo surveillance and/or further testing after detection, including invasive biopsies that have significant risks of complications. The vast majority of these "cysts" will prove to be of no consequence.
A final point is that while screening very high risk individuals may detect some early cases of pancreatic cancer, there is as yet no evidence that screening reduces death rates. For this and many other reasons, the US Preventive Services Task Force (USPSTF) again last month recommended against routine screening.
In sum, we need better methodologies to screen for pancreatic cancer and need to limit such testing to those at highest risk so as to minimize harm. Physicians should be careful not to raise false hopes at this time.
318
@Brad---You add some very good points to my discussion of my personal experiences with pancreatic cancer. The frequent presence of benign growths on the pancreas does further complicate the diagnosis. and "curative" surgery is not without its own risks.
I sure hope there are better screening and treatment options available soon.
34
@Brad
A very thoughtful, astonishingly insightful comment. As a cancer researcher, I couldn't agree more.
35
Dr. Simeone:
I have type 2 diabetes and I have read that in the early stages pancreatic cancer can cause big swings in glucose readings. Shouldn't this be part of screening for early signs of pancreatic cancer?
23
I am a radiologist who has diagnosed many cases of pancreatic cancer. Several years ago I did an abdominal ultrasound exam on a patient with belly pain. It was a high quality exam which demonstrated the pancreas very well. His symptoms persisted and several months later we did an abdominal CT scan which showed an inoperable pancreatic tumor. We went back and re-evaluated the ultrasound, knowing exactly where to look. The exam was perfectly normal.
I sincerely doubt that any routine imaging screening exam will make any difference in the early detection of this killer. My mother and my father's mother both died from pancreatic cancer. I wish that there was a reliable screening exam available.
285
I found it interesting it was the women in your family that were affected. This is the same for my husband, his mother and his sister died of pancreatic cancer. His two much older brothers do not have the disease. Is gender a link for some types of this particular cancer?
9
@Michelle G
That is an interesting question you raise, but no, the risk of pancreatic cancer is the same for both sexes. The family history is significant, but loosely. A controllable risk is smoking.
20
@Hank Gold: For all the talk of pancreatic cancer being rare, a lot of the commenters on this thread cite themselves or family members who have/had it. Maybe not so uncommon? Or just so many people drawn to this story because they have personal experience(s) with it?
I'm finding it quite scary, actually.
19
Dr. Simeone's thoughtful analysis of pancreatic cancer involves the issue of research overall. Years ago, my father began the first clinic devoted to pediatric nephrology problems. When I was 13, I began a two-year study on liver disease that won me a NSF grant to Columbia University's school of Medicine. I did a national study on breast cancer at Yale based on 700 patients and 65 hospitals. My studies had an impact on the selected diseases from diet to extent of surgical intervention. But there has been little research into brain transmitters, receptors, myoclonus, or the long-term effects of ionizing radiation. Receptors, I've discovered, can rearrange the biomolecular structure of drugs which could lead to complications. Neurologists who treat Parkinson's with L-Dopa and the drug does not work do not know that even though Parkinson's is a subset of myoclonus (a disease 99% don't know), one can also have myoclonus-Parkinson's, requiring a different set of pills. Same for epilepsy since myoclonus on its own induces tremendously dangerous and long macro-spasms. Myoclonus will also join with Gullain-Barre Syndrome but the result is typically misdiagnosed as severe neuropathy, particularly in diabetics. More, people enduring any of these diseases will not be used in clinical trials because they will be outliers and prevent reaching the 95%-plus level of confidence. The current administration is cutting science and scientists out of agencies.
44
@Lillian F. Schwartz Glad to hear you are a genius who performed significant original research at age 13.
That does not increase my confidence in the second half of your comment.
7
My husband died at age 66 of metastatic pancreatic cancer. It is so typical of articles about cancer to be so hopeful as if there is a cure for cancer around the corner. The hope here is for the 15% with identifiable risk factors. The majority of PC patients fall in the 85%.
When my husband was ill, I read the oncological journals. I sure knew the rosy prospects for Neuroendocrine PC, but it’s only 10% of PC. My husband pressed our oncologist, refusing to let him out of the room until he answered his question about continued chemo after his marker went from 55,000 at the onset of ANY symptoms (<33 is normal) to 85,000 under chemo : if you were I, knowing the prospects for any improvement (i had read the journals showing he was a terrible candidate), would you continue? After repeatedly saying he couldn’t make that decision, he answered the question: no. My husband was too healthy to qualify for any clinical trial because he was too healthy! Let’s make it real so people can make informed decisions. The last line of the article says 9% survival for all patients. That includes the lucky few who can have surgery when symptoms appear.
101
My late father was diagnosed with PC 9/11 and passed away 8/12, 11 months after diagnosis. Seeing this disease up close and personal was a real eye-opener from me, and I’m an M.D. (peds.).
My Dad had many difficult days, but got some relief from chemo and RT. Sadly, this was only temporary. We were fortunate to have a wonderful hospice team and a lot of great family time before he passed away at the end of a heart-wrenching summer.
I wonder about routine abdominal ultrasound as a screening tool, which the physician in the article did not mention, but which is easier, no radiation exposure, and less expensive.
Please support the Lustgarten Foundation, dedicated to PC research. Hoping and praying for an easy course and a good outcome for Alex Trebek, a daily presence in millions of homes each evening (including mine), and a very classy guy.
110
The changes in genetic testing and chemotherapy are remarkable, and I appreciate your optimism and commitment to improving diagnosis and survival, but buried in your essay is the heart of the matter. Even in a heavily pre-selected population of referred patients with pancreatic cancer, a risk factor for pancreatic cancer cannot be found.
36
My father was diagnosed with inoperable pancreatic cancer on January 3, 2016 and died 2 weeks ago, February 28, 2019. He was initially given 6 months at best, but the chemo protocol he was given gave him almost 3 years of an incredible quality of life. He saw the birth of 2 great-grandchildren, was able to play many rounds of golf at my parents condo in Florida, and walked my sister down the aisle at her wedding, all why being treated every other week with chemo. The first signs of his illness was a rapid, unexplained loss of weight. He was treated at Yale/New Haven Smilow Cancer center and I credit them with finding the right chemo regiment. Although there was cancer in our family, no-one had pancreatic. As we all know, cancer happens because we are alive, and the older we get the more susceptible we are, but modern medicine is making great strides in living longer and much better. My heart goes out to people who are diagnosed and within months die very quickly, but modern medicine really is making tremendous inroads to this insidiously cruel malady. My families appreciation and gratitude goes out to all the dedicated researchers and doctors who are making a difference in quality of life for not only some in this generation, but certainly for future generations.
206
"Pharmaceutical companies will often not pay for tumor biopsies involved in clinical trials" But they are constantly telling us their outrageously high prices and profits are justified by how much high quality research and innovation they do.
222
I appreciate this article and its many suggestions. However, the numerous people I know who had this horrific cancer and died from it never had family members who also had it nor did they smoke, drink, have Type 2 diabetes or were obese.
The optimistic tone offered is encouraging, however, it is still a silent killer for many, if not most individuals. By the time any symptoms appear, it is usually too late for a cure. I am not a physician, merely a grieving friend of so many who have passed.
119
It is a brutal disease. My mother was diagnosed and within a year it took her life. That was 30 years ago, but it haunts me and my siblings to this day. I appreciate those researchers taking on the challenge of this cancer. Finding a path to make it less deadly is a powerful start.
34
My father passed away from Pancreatic Cancer in 1992, four months after his diagnosis, at the age of sixty. Three months prior to his diagnosis, he had increasing GI issues and scans showed nothing. At diagnosis, they said the tumor was the size of a pea and had metastasized to his liver.
I found this article to be very hopeful and insightful that they have found some gene correlations. My dad was a lifelong smoker and loved a good sausage. I have no idea if he had any gene mutations, but according to the article I would not be a high risk case as I have only one blood relative that has had pancreatic cancer. I have always been told by my doctors that pancreatic cancer is not familial.
It’s a devastating disease and I know way too many people that have succumbed to it for it being such a rare cancer. I applaud the doctor’s research efforts all those involved with it. I’ll be sixty next year, and it makes me so sad that my dad didn’t get past that age. I’m going to make a donation towards continued research tonight.
5
@Madeline Conant
The average radiation exposure in a single CT scan of the abdomen varies from 10 - 20 mSv, for comparison the exposure in a chest X ray is 0.1 mSv. The average background radiation from natural sources that Americans are exposed to in a year is about 3 mSv/year. So to routinely expose a human to 100 - 200 times the radiation of a single chest X ray every 5 years adds significantly to the risk of radiation induced damage and cancer in the long term.
In older individuals, this may not be an issue, as this takes decades, but younger people have that time left in their lives and are especially at risk. Furthermore, people in child bearing ages should try to avoid CT scans unless absolutely necessary to avoid gonadal exposure.
MRI scans so far have been designated as safe, but take much longer to do and are significantly more expensive. Also they are contraindicated in most people with prior implants like pacemakers, defibrillators or in individuals with gunshot or any injuries that may have left some metal in the body.
To me, a blood test with a specific and sensitive tumor marker is the best option. CA 19-9 is used but not always positive and can give a false sense of security.
45
@Shahbaby Thank you for being definitive about the radiation danger involved in CAT scans.
7
@Shahbaby
I've been getting what is termed "a low-dose CT scan" of my chest and abdomen once a year to keep tabs on some small nodules I have. It sounds safe enough but I'm not sure what the actual dosage of radiation is supposed to be.
Since when are abdominal CT scans routine?
97
@Jeffrey Darna I would like to understand that question as well. Thanks!
5
@Jeffrey Darna The article didn't explain well. RBG was having "routine" CT scans to check for metastases of a cancer she'd already had (I forget which). In her case, it was routine, but of course for most people it's not (nor should it be).
17
Dr. Simeone's advice is encouraging but what we really need is a diagnostic breakthrough for pancreatic cancer by a simple blood test. There will likely be such biomarker tests (DNA or proteins in the blood produced by the pancreatic cancer cells before the primary tumor has spread) like the CancerSEEK blood test that is being investigated for its potential to detect many types of cancer early (https://www.hopkinsmedicine.org/news/newsroom/news-releases/single-blood-test-screens-for-eight-cancer-types).
27
It would be interesting to hear Dr. Simeone's view on the CA19-9 test.
7
If a CT scan is the test that can find it, why not let people who can pay for it get a CT scan every 5 years? Would that be effective in finding cancers soon enough?
2
@Madeline Conant
If you can pay for it, you can do it. About the test, MRI cholangiopancreatography is accurate and less invasive (no X-rays) than CT scan.
8
Low back pain is also a symptom of pancreatic cancer.
10
But half the people I know have lower back pain!@Jan
5
@Jan Low back pain is mostly a symptom of posting on medical forums too often, without references.
10
@Jan Jean in Mich I have had lower back pain for about 30 years of my life.Basically cured by Massage therapy and my own home efforts. My mother died of breast cancer at 69.My brother died of multiple myeloma at 39. His son died of a brain tumor at age 29. A sister has had 3 bouts of breast cancer and is currently doing pretty good on chemo by pills. Another sister who is 81 has
multiple myeloma and is not doing so great. I take care of myself and hope for the best. My insurance is not that great and if I get a terminal disease well I guess I die. I am 76 and maybe that is good enough.
10
While I am not a proponent of at home commercial genetic testing, one very compelling outcome of discerning your ancestry is the fact that many Europeans who may have Ashkenazi backgrounds converted to Christianity to save themselves and their families during and after WW II; so too for those who fled the pogroms in the beginning of the 20th C. Therefore, many do not know they might carry a deleterious BRCA gene mutation if we think of it only as a Jewish gene. Given that pancreatic cancer is the most deadly of the BRCA- related illnesses, it is essential that we think about testing more widely, in a medical setting where the results of the tests can be correctly interpreted and recommendations thoughtfully made.
34
I’m very glad that Justice Ruth Ginsberg had early detection and treatment of her pancreatic cancer in 2009. Your article said it was found during a routine CAT scan. There is no such thing in our current insurance system for “regular” people to have “routine” cat scans. It most certainly would not be covered unless there was a symptom triggering that. Unfortunately with pancreatic cancers, once there are symptoms, the cancer is more advanced and difficult to treat. So, it would have to be paid out of pocket and would be very expensive.
100
@June - the USA health system and most MD's do not focus on prevention, only treating problems once they occur.
31
@June What exactly do you deem "our current insurance system" to be? I know from experience that Medicare (which Justice Ginsberg is a paid up member of) has a significant number of preventative scans and investigative procedures that are fully covered - I know I am being pestered by multiple medical institutions that would like to help me relieve the Fed of lots of money.
21
Is it possible that Justice Ginsberg’s CT scan was not “routine”, but was indicated or related to her previous diagnosis of colon cancer?
25
The US agricultural sector went from applying 25 Million pounds of glyphosate based herbicides (Round-Up) in 1992 to 300 Million pounds in 2016. There is a compelling link between Round-Up and Non Hodgkins Lymphoma so perhaps it is also causing other cancer such as pancreatic cancer.
151
@Jacquie
Yes yes yes. Round-Up is a toxic killer, for us all, and yet it is sold like a gallon of milk. Please do not buy it. Please do not use it. Monsanto is to the planet what Trump is to our country - malevolent toxic rot within shimmery awful false packaging, both are obvious cons, preying on the ignorant and peddling false hope.
42
@Jacquie
It has been used for decades and no significant study has ever suggested a causal link - there is not a single international health body that recognizes any relationship between any cancer and Round-Up.
The European Food Safety Authority looked at 21 human studies and found no evidence for an association between cancer and glyphosate use.
The IARC looked at 19 human trials and found no statistically significant evidence for an association with cancer.
Same for all US Food Safety bodies.
9
With this admin seeking to bring back the ore-existing condition exclusion, having a genetic test in your file may make it impossible to get insurance/afford treatment later.
We need to either drop the for profit model or get insurers and their lobbyists to understand that profits need to be lower. Right now, they confidently believe that you will spend every dollar you own on saving your life and they want every dollar moved directly into their pockets. The fastest way to do that is take away coverage.
185
@Sw - The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information. See:
http://www.ginahelp.org/GINAhelp.pdf
I assume that GINA would trump any pre-existing condition exclusion, should the pre-existing test return.
16
@Joseph - You don't think that an insurance company would find their way around a little thing like that? I think that it would be fairly easy to concoct a reason to exclude a condition based on something other than the genetic test.
Difficult to justify the risk. It is hard enough to get a diagnosis of anything nowadays without the fear that it will blackball you from getting insurance if pre existing conditions goes away - the potential for pancreatic cancer surely would scare away any insurance company. Expensive to treat.
54
@Schoenberg No I don't. it would be ILLEGAL to do so!
9