Another Promising Test for Early Stage Pancreatic Cancer

Recently, we wrote about a very encouraging test for pancreatic cancer that initially showed 100% accuracy.  It is a blood test , so relatively non-invasive — though the test must be custom designed to detect the “telomeres” that signal emerging cancer.

Now, a new study has been announced that uses a urine test to detect early pancreatic cancer.  This test detects four different varieties of “MicroRNAs,” which are involved in a variety of cell regulation processes and, when they show up in unpredictable forms or amounts, signal the presence of cancer.  The test was conducted at several hospitals in England.

The test showed high sensitivity (accurate detection of positive results) and specificity (accurate detection of negative results) — over 80% for both. While not as high as the blood test announced recently, these tests must go through lengthy, rigorous study, so the more candidates, the better.

Now we should hope that both tests navigate regulatory hurdles quickly and successfully.

Early Test for Pancreatic Cancer Hopefully On the Way

Pancreatic cancer is one of the most deadly forms of cancer, with a five-year survival rate of only six percent.  The low survival rate is because, in 80% of the cases, it has already spread to other organs when first detected.

Early detection means better treatment options and a much better chance of survival.  The problem is that PanCan has been very hard to detect early.  According to the Pancreatic Cancer Action Network, “[t]here is currently no standard diagnostic tool or established early detection method for pancreatic cancer,” but such a test is “urgently needed.”

Pancreatic cancer is a particular concern for people battling chronic pancreatitis since about five percent of CP patients will contract pancreatic cancer — a much higher risk than faced by the general population.

Fortunately, life-saving help may be on the way.  This summer, researchers led by a team at MD Anderson Cancer Center announced that they have developed a blood test that detected pancreatic cancer with “absolute specificity and sensitivity.” Put simply, this means 100% accuracy.  The test detests “exosomes” — tiny particles released by cancer cells — that are present when a patient has pancreatic cancer, but not when the patient has chronic pancreatitis.  The exosomes apparently have value beyond detection, providing doctors with helpful information on the stage and precise mutations of the cancer — opening up the possibility of customized therapies.

By OpenStax College [CC BY 3.0]

Moreover, because detection involved a blood test, it is much less invasive than the usual diagnostic tools used for PanCan, such as CT scans and endoscopic ultrasounds…but with greater accuracy.

The researchers caution that larger studies are required to validate the findings, but note that 100% accuracy is extremely encouraging (and not something often found in such tests).

It is high time that doctors had effective tools to detect and fight this lethal disease.  We should all hope — and demand — that the test be made commercially available as soon as possible.

 

One Patient’s Story of Recurrent Pancreatitis Due to Sphincter of Oddi Dysfunction

One reader was kind enough to send in his story, which is dramatic but probably not atypical for CP sufferers.  I hope you find it useful.  Please feel free to respond to some of his questions at the end.

From R.:

If you don’t mind, I’d like to share the story of my own pancreas odyssey, in hopes that it might be helpful to you or one of your sites visitors as they navigate their way through life with a pesky pancreas. There is such variance in knowledge of the pancreas in the medical community and such a real potential for misdiagnosis that I would be happy if I could spare one person from an unnecessary procedure or an avoidable delay in the improvement of their condition.

And maybe you, or someone visiting this website, might have some information useful to my situation.

For fifty years, my pancreas and I quietly coexisted in symbiotic harmony. Four years ago, that relationship changed — for reasons that none of the top pancreas specialists in my region can fathom.

None of the etiological tick boxes fit me: not a drinker, no gallstones/gallbladder issues, quit smoking years ago, followed (and follow) an exercise regimen and have always been in very good shape, always ate thoughtfully, no problems with triglycerides, no auto-immune issues, no genetic markers for cystic fibrosis or any other known hereditary cause. No scorpion bites etc…Because of this, Doctor Freeman at the University of Minnesota Pancreas Center calls me his 54 year old poster-boy for idiopathic acute recurrent pancreatitis.

My first attack happened late in the evening of a very stressful day in February 2010. I had the sudden onset of a stabbing pain just beneath my sternum that radiated to my back. I waited a day and a half before going to an urgent care center, where lab tests showed my amylase and lipase levels were sky-high (a hallmark of my attacks) , and I was formally diagnosed with acute pancreatitis. I was transferred to a hospital and spent 5 days getting x-rays, ultra-sounds, blood tests done, while being given IV hydration, analgesics and no food for several days to rest the pancreas. The hospital explained the common etiologies for pancreatitis and said that since they could not find a reason for the attack — that it could very well be a unique experience. (If only that had proved to be true!)

In March 2011, after my second attack, I had a EUS performed and the Dr. found no signs of a chronic condition, no signs of stones or any real sludge, but surmised that some micro-crystals may have played a role.

In May 2011, after my third attack, my GP told me ‘Why don’t you just go and get your gallbladder removed?’
So, in August 2011, I had my gallbladder removed; a lovely, gallbladder that had no signs of stones or disease. A week later, I was back in the hospital with another pancreatitis attack. (Major Bummer).

After this, I followed up with a G.I. specialist who was recommended by this hospital. This specialist thought I had pancreas divisum or auto-immune pancreatitis (even though my IgG4 lab results were fine) and even contemplated taking a biopsy of my pancreas for cancer.

By this time, I was getting frustrated and decided to find the best doctor possible. Due diligence and a ‘gut feeling’ led me to make an appointment with Dr. Martin Freeman at the University of Minnesota’s Pancreatic Biliary Center. Dr. Freeman is a world-renowned pancreas expert and his center is preeminent in treating pancreatic disease. He recommended an MRI with secretin, to get a clear picture of my anatomy. The imaging positively ruled out pancreas divisum and revealed no structural signs of why I was having these attacks.

In November 2011, after my fourth pancreatitis hospitalization of that year, I told Dr. Freeman that I had to do something about this… the pancreatitis attacks were affecting my ability to plan my life.

In January 2012, he performed an ERCP on me and checked the pressure on my biliary and pancreatic ducts and found the pressures were very high… so he performed a dual sphincterotomy to relieve the pressures. I now became well-versed in the literature on Sphincter of Oddi Dysfunction and the role it can play in idiopathic pancreatitis.

After the ERCP, I felt great and began to feel that I could actually resume a ‘normal’ life. Five months later, however, everything went Haywire. In a six-week period I had five consecutive pancreatitis hospitalizations. I had absolutely, no idea what could be contributing to this flurry of attacks: my diet was the same very low-fat regimen that I had been on since my second attack of pancreatitis, I was on no medications, etc… nothing made sense.

In those five weeks, I lost twenty pounds and experienced the physical and psychological trauma that comes to those of us who have encountered real uncertainty about our health.

I also received a gift that I am truly grateful for. During my last hospitalization at the University of Minnesota hospital, Dr. Steven Miles visited me with a team of young doctors who had taken an interest in my case. Dr. Miles proceeded to give me an elaborately researched presentation on his laptop. He explained every test that the doctors had run on me during this flurry of hospitalizations and concluded that since my pancreatitis attacks always heal consistently — my disease is ‘simple’ and therefore, in the future, I could treat myself at home during an attack with a prescription for a pain reliever.

As a fellow pancreatitis-experiencer, I don’t have to tell you what a godsend it was to be told that I did not automatically have to be hospitalized if I had a pancreatitis event!

After I had recovered from my flurry of hospitalizations, I saw Dr. Freeman in September 2012, for a follow-up ERCP to try and ascertain why I had these attacks. Dr Freeman scoped me and said the ducts looked fine and saw no reason to intervene surgically.

In March 2013, I went for a second opinion at the Mayo Clinic in Rochester, Minnesota. They performed a battery of blood tests and reviewed my medical charts and confirmed that I was one of that rare subset of people who are experiencing true idiopathic recurrent acute pancreatitis. The two doctors who met with me, presented something of a good cop/bad cop dialogue. The ‘good cop’ said that my illness may well be an anomaly that vanishes from my life as mysteriously as it arrived. The ‘bad cop’ was more prudent… escorting me out the door with assurances that future pancreatic research may someday offer me relief.

I am delighted to say that I have not been in the hospital since August of 2012. Since that time, I have continued to have attacks – but they are now getting further apart. (Six months between the last two attacks.) Between acute attacks, I am fortunately, pain free.

There are many things I’ve learned on my journey with pancreatitis. Being diagnosed as idiopathic, has encouraged me to be very proactive in researching and understanding the probable and possible causes for my condition. This knowledge has helped me to better understand and communicate with my personal medical team and to maximize the value of the limited time these professionals can offer. My experience and research has also illuminated the great discrepancy that exists amongst medical professionals in terms of real knowledge of the pancreas and the Sphincter of Oddi. I highly recommend that anyone who has — or thinks they may have — a recurring or chronic issue with their pancreas to seek out the services of a Pancreas specialty center in a research hospital. Before, I found myself in the good hands of Dr. Freeman at the University of Minnesota, I had been erroneously diagnosed with pancreas divisum and recommended for a gall bladder surgery that I very likely did not need. A pancreas specialty center will have the best diagnostic tools available and the most experienced researchers and surgeons.

The more I learn about pancreatitis and Sphincter of Oddi Dysfunction… the more questions I have:

I wonder about the role of stress in pancreatitis and Sphincter of Oddi dysfunction. My first pancreatitis attack, came on a day of great immediate stress, superimposed on a a host of more chronic stressors. Several other attacks have occurred during stressful periods. I am curious if any other pancreatitis-experiencers have attributed their attacks to a stress overload and felt some kind of attendant muscle or sphincter tensioning might play a role in these. Has anyone had better control of their flare-ups with anti-anxiety medication?

I also wonder about the role of medication in the origin of my pancreatitis. I had been on a generic fluoxetine prozac prescription for a few years prior to my pancreatitis attack. After my second attack, I discontinued this medication — but continued to have attacks.

Also, I wonder about the true role of diet in this condition. I maintain a very consistent, very low-fat diet… and still have pancreatitis attacks. (Though, I have had less frequency since switching to a gluten-free diet). I am curious as to what other people who have a similar profile to mine are able to eat. Am I needlessly, depriving myself of some healthy fats out of an unnecessary fear?

Finally, the onset of pancreatitis turned my employment situation topsy-turvy. Now that things have appeared to stabilize, I’m in the process of rebuilding my life and trying to reintegrate myself into the work-world. I’m curious to know how other pancreatitis experiencers manage their work-life while navigating this condition. How do they deal with absences from work? If they are looking for work, how do they explain a gap in their resume caused by illness? Are many pancreatitis experiencers able to create self-employment scenarios that allow them to work around flare-ups?

I know I’ve written a book here, but if I can help anyone out, or if someone who reads this can identify with or assist me in my own healing… these words will be meaningful. I wish you and all others who negotiate this condition; great wisdom, love and healing.

Sincerely,

R.

Becoming Better Everyday

Helpful Videos on Chronic Pancreatitis

The last few months have seen the emergence of a number of instructive videos on chronic pancreatitis.  Many come from the National Pancreas Foundation, which has a YouTube channel called “The Animated Pancreas Patient” with a host of videos, including animations, interviews with patients, and doctor commentaries.

A brief overview of chronic pancreatitis (nothing new to the long-time patient):

The link between alcohol, smoking and CP:

Foods and drinks to avoid when you have CP (fairly basic…see our Diet & Nutrition page for some more detail.  Note the reference to coffee, which still seems to be an open question):

One patient’s progression of the disease:  (One I did not find particularly encouraging, but the doctors do not suggest that it is typical)

Great to see this patient education coming available…hopefully more to come.

Pancreatitis Often Leads to Rarer Form of Diabetes, Often Misdiagnosed

It is well known that people suffering from chronic pancreatitis (“CP”) are at high risk of developing diabetes.  Much less well know, however, is that CP leads to its own specific type of diabetes, Type 3C.  An article in this month’s World Journal of Gastroenterology (available in full for free here) focuses on this phenomenon and the risks and challenges it poses.

Much less is understood about type 3c diabetes than the more common types 1 and 2.  It is a disease very closely related to chronic pancreatitis — according to the authors, over 80% of cases are caused by CP, as over time CP destroys pancreatic islet cells and reduces insulin production.  They report that up to 70% of patients with a confirmed diagnosis of chronic pancreatitis will develop type 3c diabetes…and the prevalence rises to 90% where there is calcification.  Essentially this form of diabetes is a companion condition and should always be considered when a patient has CP.

The authors explain that type 3c is often misdiagnosed, for several reasons. First, when people present with diabetes but have not yet been diagnosed with CP, doctors often assume that it is the more common forms and don’t go on to test for CP (which, as we know, is not easy to detect).  Second, since diabetes can itself lead to pancreatitis, finding the two together may prompt doctors to assume that diabetes came first.  Third, there are not clear diagnostic criteria for type 3c, though the authors go on to propose a high-level list (see Table 2).

This is problematic because type 3c diabetes requires specific treatments that are different than those for types 1 and 2.  And missing the diagnosis of CP means that the condition itself may go untreated.  There are apparently no established guidelines for treatment of type 3c, though the topic was addressed at the 2012 PancreasFest conference.  In general, the authors explain that for type 3c “treating exocrine pancreatic insufficiency, preventing or treating a lack of fat-soluble vitamins (especially vitamin D) and restoring impaired fat hydrolysis and incretin secretion are key-features of medical therapy.” The authors review the current evidence on appropriate therapies, though clearly more research is required.

Interestingly, the authors conclude that chronic pancreatitis may be considerably more common than we think.  The reach this conclusion after finding that type 3c accounts for a much larger proportion of diabetes cases than originally thought — 5-10% of cases rather than traditional estimates of around 1%. Since CP accounts for 80% of those cases, there must be a lot of people with undiagnosed CP.  This is apparently confirmed in autopsies; like some slow growth cancers, many people in the general population may develop CP and never know it.

One other noteworthy point in the article:  In discussing the prevalence of CP, they observe that “chronic pancreatitis has previously been considered a disease of alcoholism until the discovery that it is a multifactorial disease with an impact of complex genetic genotypes, smoking, special anatomic conditions, toxic agents and autoimmunity.”  As CP patients know well, many medical professionals are slow to come to this realization, attributing CP mainly to alcohol abuse.

Fortunately, there seems to be a lot of new research on pancreatitis in the last few years.  This month’s issue of the World Journal of Gastroenterology alone had several insightful articles, including one on pain management discussed here.  We need to make sure that doctors on the front lines are aware of these developments and treat their patients accordingly.

A Promising Non-Invasive Test for Pancreatitis

A study from the University of Minnesota’s Department of Surgery has identified a urine test that promises to identify acute and chronic pancreatitis.

After evaluating sixty different biomarkers, researchers identified two — citrate and adenosine — that were significant in identifying the disease after validation.  Interestingly, the markers could not differentiate between chronic and acute pancreatitis.

The study was limited by the small sample size — 15 total patients, 5 each with acute and chronic pancreatitis and 5 healthy patients.  But the authors concluded that larger studies could validate use of a urine test.  Given the difficulty of diagnosing the disease without invasive procedures such as endoscopic ultrasound, such a test would be of immense value.  (Personally it took about five years for my condition to be diagnosed accurately, during which the condition worsened significantly.)

An abstract of the study, which was published this year, can be found here.