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Thread: PanCan 101

  1. #1

    PanCan 101

    This thread is a brief overview of Pancreatic Cancer, its symptoms, diagnosis, treatments, common conditions and side effects, and resources for additional, more detailed, information. Based on the complexity of this type of cancer, I can in no way cover it all in one thread. However, if you feel that something here is incorrect, outdated, or missing, please feel free to PM one of the moderators with your thoughts but again, keep in mind that I am trying to keep this as brief as possible without leaving out the most important and pertinent information. Because the vast majority of pancreatic cancers is Adenocarcinoma, the info here will focus on that with links to info regarding other types of pancreatic cancer. Also keep in mind that I am familiar with resources in the United States, so if members in other countries have info that may be helpful that I’m not aware of, please let one of the moderators know.
    Last edited by BobInBonita; 04-03-2015 at 08:30 PM.
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  2. #2
    The Pancreas

    The pancreas, a small organ located deep in the abdomen, is a vital organ in the digestive system. It is responsible for producing enzymes to help in digestion and hormones, such as insulin and glucagon, which helps metabolize sugars in the body. It somewhat resembles a fish, with a head, body, and tail with two blood vessels, the superior mesenteric artery and superior mesenteric vein, which run through the body of the pancreas just behind the neck. The pancreas consists of approximately 95% exocrine cells, and 5% endocrine cells. Where the tumor is located on the pancreas can determine the type of pancreatic cancer and the course of treatment used.

  3. #3
    Types of Pancreatic Cancer

    Exocrine Tumors: Approximately 95% of pancreatic tumors are exocrine tumors (starting in the exocrine cells that produce digestive enzymes) and 90% of these are Adenocarcinomas. When you hear someone say that they have Pancreatic Cancer, they usually are referring to this type, however, there are other types that are far less common. The following link will take you to a table which lists and describes the different types of exocrine tumors.

    A small number of these tumors or cysts are benign (non-cancerous), such as cystadenomas, but most exocrine tumors are malignant (cancerous). Treatment of exocrine tumors depend of the stage, rather than the type, of tumor.

    Endocrine Tumors: Less than 5% of pancreatic tumors are endocrine tumors (starting in the endocrine cells that produce insulin and glucagon), otherwise known as neuroendocrine, islet cell, or NETs. These tumors can be either benign or malignant and are typically known to be slower growing than the more common exocrine tumors. The following link will take you to a table that lists and describes the different types of endocrine tumors.

    It is very important to distinguish between exocrine and endocrine cancers of the pancreas. They have distinct risk factors and causes, have different signs and symptoms, are diagnosed using different tests, are treated in different ways, and have different prognoses.

    Follow the link below for additional, detailed information on the types of Pancreatic Cancer.

  4. #4
    Symptoms of Pancreatic Cancer

    Pancreatic Cancer is often called the “silent” disease because symptoms often do not appear until the later stages. Most people will experience only some of the symptoms on this list, while others experience none at all, and symptoms may be vague and differ depending on the size and location of the tumor.

    Further, if you experience even several of these symptoms, it does NOT mean you have pancreatic cancer, as these can be symptoms of countless other conditions. If you are concerned or worried that you may have PC, please read below under the heading “What to do if you suspect you have Pancreatic Cancer”.

    Some signs and symptoms of exocrine Pancreatic Cancer are:
    • Jaundice – Yellowing of the skin and eyes due to a build-up of bilirubin (or bile) in the system.
    • Abdominal or Back Pain
    • Weight Loss or Decreased Appetite
    • Digestive Problems – Some digestive problems can include nausea, vomiting, pain after eating, and the inability to digest fatty foods which causes pale, greasy, bulky stool that floats.
    • Gallbladder Enlargement
    • Blood Clots
    • Diabetes
    • Extreme Fatigue

    Since the symptoms and conditions that can arise from endocrine Pancreatic Cancer are far more complex, please follow the link below for detailed information.

    KyGirl asked what were your symptoms before diagnosis and got these "real life" responses that show how varied things can really be for real patients:
    • Annieosage - What sent Mike to the ER was extreme pain in his abdominal area. When they did the CT scan the ER doc was very solemn and basically told us the radiologist saw nodules in his pancreas, liver, lymph nodes, mesentary artery, and peritoneum. So leading up to that point there really was not a whole lot of symptoms until that couple days he had pain. Looking back to the summer before we recalled Mike had some bowel issues we thought it was from the NSAIDs he was on for his arthritis. Now we realize it was probably the cancer.
    • DDessert - Mine was steadily increasing abdominal and back pain. My tumor was adjacent to a nerve bundle that passes through the pancreas and caused the pain. No other symptoms.
    • Junepath - My mom had pain in her side similar to gallbladder pain, but she no longer had a gallbladder. Doctors said it was reflux without doing any testing. They had scheduled an endoscopy but found the cancer a few weeks before she was scheduled to have it. Obviously it wasn't reflux.
    • BobInBonita - I had symptoms of pancreatic enzyme insufficiency (loose, light colored stools) for years but passed it off as glass gut/irritable bowel. Liver enzymes going up on routine blood test were first real alarm. No pain or weight loss.
    • Weylandburns - I went to the ER a bright shade of yellow. The tumor was blocking the bile duct. From what I've read in many of the cases the diagnosis comes as a result of patients going in for other issues. That is why in many cases it is diagnosed at a late stage. I have always wondered why they don't recommend getting a PET scan at intervals the same as they do a colonoscopy. I'm sure there must be a reason I'm just not smart enough to figure out.
    • Parisdeb - I had absolutely no symptoms. Cyst (with tumor) found completely by chance after an allergic reaction to an antibiotic (bactrim) sent me to the ER. The good doctors there had me do an ultrasound to be sure my kidneys weren't affected by the reaction. The kidneys were fine, but they saw a big "something" on the tail of my pancreas. I am VERY lucky.
    • Fighterm - I know of one case of a tumor on pancreas that turned out to be the non-Hodgkin's lymphoma. Not all tumors there are pan can.
    • Rod Holland - I felt consistently tired for a month. I thought it might be the flu. I made an appointment on Tuesday to see my physician on Friday. Thursday evening I became jaundiced. On Friday I did ultrasounds and high contrast CT scans. That was followed by an EUS and fine needle biopsy which misidentified the tumor type as cholangiocarcinoma and size at 2.5 cm. Whipple was about 2 weeks after diagnosis. The post surgery biopsy changed the type to adeno pc and the size to 5 cm.
    • MSH - I started with painless jaundice, though it didn't stay painless for long. Within about six weeks I had pain waking me in the early morning going through to my back. It was this that convinced me I had cancer. It was hard to grasp I was suffering from something so serious when I felt so well. The jaundice went with the stent, which has subsequently disappeared and the pain went after the first couple of cycles of chemo. All my recent symptoms have been from the bony secondaries.
    • Hussy -My husband complained of fatigue for several weeks. He said his stomach felt "different, not right" but he couldn't articulate exactly what this meant. A couple of days before his appointment with his PCP his urine became bright orange, his tool turned tan, and he became jaundiced. His PCP sent him right to the ER where the tumor blocking his bile duct was discovered.
    • Lattiee - Not sure if this could be related to the pancreas issue as my uncle had high platelet levels for quite awhile . A year ago he had chronic diarrhea but the dr diagnosed him with cdiff more than once . This Fall and Winter time he started to have more continuous throw up issues. They did endoscopy on him more than once along with a colonscopy like about in june and November or dec I think. They didn't find anything then . He also had some kidney failing issues in January but they got fixed. On April 15 he was complaining of severe abdominal pain. Then thru out the 2 weeks his pain increased and he started to get jaundice that spread so fast so thru his body that his face to his chest was totally yellow . The week he passed he needed a catheter, the next day he was struggling to breathe , the day after he ended up in a coma which mom said it was awful to see him to be struggling to breathe as I don't know how that could be a coma in my mind so then he passed away 16 hrs after the coma stuff.
    • Tony22 - My dad didn't have symptoms until it was at stage 4. He was developing stomach and back pains and a high fever for a week. He thought it was just a normal cold. He also thought that the pains were from him breaking up a fight at his job. Some people develop symptoms earlier than others.
    • BrigitteM - I had a liver ultrasound that showed an enlarged bile duct. This led to more exams to understand what caused the bile duct stricture, and to the discovery of a mass on the head of the pancreas (CT scan). An ERCP w/EUS FNA confirmed the diagnosis.
    • Glu - I had full abdominal ultrasound initially before my diagnosis but the pancreas area was not clear. My symptoms were basically related to heavy jaundice. Then I had an ERCP which revealed a tumor on pancreas head.
    • Mcarril - My mom's cancer was not detected by normal ultrasound nor a CT scan but with an endoscopic ultrasound. They were looking for another thing and found a tumor in the body of the pancreas.
    • Ullarsson - I went to the local hospital's ER at my PCP's urging. They did an abdominal ultrasound and CT scan. They saw something was there, but were not sure and did not have the skills on staff to do further testing. So, I was sent up the road to the Uni MD med center in Baltimore where an ERCP and biopsy were performed. The 1st one was inconclusive, but the stent became blocked, 2nd ERCP and biopsy confirmed a tumor in the head of the pancreas.
    Last edited by BobInBonita; 10-27-2016 at 08:56 PM. Reason: Add additional user experience

  5. #5
    What to do if you suspect you have Pancreatic Cancer

    If you are experiencing any of these symptoms, the first thing you should do is take a deep breath and relax! Contact your doctor, schedule an appointment, and do not stop until you find out what ails you, whether it is Pancreatic Cancer or something else entirely.

    If you are thinking about posting on the forum for advice or opinions on your condition, please read here first.

  6. #6
    Diagnostic Tests

    As many of you know, Pancreatic Cancer can be very difficult in some to diagnose. While there is no one standard test to check for PC, there are a variety of tests that can be used in conjunction with one another. Beyond a physical exam, below are some of the more common tests used. Not all of these tests are used in the diagnosis process, and this is not an all-inclusive list.

    Imaging Tests:
    • Computed tomography (CT) scan – This is similar to an X-ray, but rather than producing one picture of the body, the CT scan produces several sectional images of the body. This test is used to detect the presence of a tumor, determine size and location, guide a biopsy, determine possibility and plan for surgery, determine a tumor’s response to treatment or whether the cancer has metastasized. A high resolution CT scan machine should be used for helping in diagnosing pancreatic cancer.
    • Magnetic resonance imaging (MRI) - MRI scans use radio waves and strong magnets instead of x-rays to measure the energy of molecules in a certain area of the body. Abnormal cells will respond differently to these radio waves than normal cells would. This test may provide different information than CT scans, and many doctors prefer CT scans to MRIs.
    • Positron emission tomography (PET) scan – A form of radioactive sugar (FDG) is injected into the blood. Because cancer cells grow more quickly, they tend to absorb large amounts of this sugar. After a short wait, a PET scanner will be used to create pictures of the radioactivity in the body. Since these pictures are not as clear as a CT scan, many times the PET scan will be used in conjunction with a CT scan, called a PET/CT.
    • Endoscopic Ultrasound (EUS) – A thin, lighted tube with a small ultrasound probe (echo endoscope) is inserted through the mouth into the stomach to the top part of the small intestine (duodenum) to create detailed visual images of the pancreas. Doctors will look for visible tumors on the pancreas and nearby organs and blood vessels, and may use this opportunity to perform a type of biopsy called a fine needle aspiration.
    • Endoscopic retrograde cholangiopancreatography (ERCP) – Somewhat similar to an EUS, an endoscope is inserted through the mouth into the stomach to the top part of the small intestine (duodenum). A catheter is then inserted from the endoscope into the common bile duct and a small amount of dye is injected. X-ray images can be taken of the bile duct and pancreatic ducts to show narrowing or blockages in these ducts. Often times during this procedure a biopsy using a brush is done, as well as the insertion of a stent.
    • Somatostatin receptor scintigraphy (SRS) – Also called an OstreScna, this test is helpful in detecting neuroendocrine tumors. It uses a hormone-like substance called octreotide that has been bound to a radioactive substance. A small amount of this substance is injected into a vein. It travels through the blood and is attracted to neuroendocrine tumors. About 4 hours after the injection, a special camera can be used to show where the radioactivity has collected in the body. This scan can help diagnose a NET, but it can also help decide on a treatment. If a NET shows up on a SRS scan, it often means that the tumor will stop growing if treated with octreotide.

    Blood Tests:
    • CA 19-9: This blood test measures the amount of tumor-associated antigens found in the blood of someone who has Pancreatic Cancer. CA 19-9 antigens are foreign substances released by pancreatic tumor cells. A normal CA 19-9 level is <37 U/ml. Because this test is unreliable, and many other conditions may cause this level to rise, this test cannot be used as a diagnostic or screening test for PC and is mainly used as a guideline during treatment.
    • Liver (Hepatic) Function Test – This test is used to measure levels of bilirubin (a substance made by the liver) and liver enzymes. Pancreatic cancer is not the only cause of higher bilirubin levels, but an elevated measurement could indicate that you have a tumor that is blocking the bile duct.
    • CEA (Carcinogenic Antigen) – Levels of this protein in the blood typically increase in people with cancers of the gastrointestinal tract. However, like CA 19-9, CEA levels can also rise in response to noncancerous conditions such as pancreatitis.

    Imaging tests can be helpful, but a biopsy is the only true way that Pancreatic Cancer can be diagnosed 100%. Cells are taken from the affected area and looked at under a microscope by a pathologist. If cancer cells are present, the shape, size and arrangement of the cells may help determine the type of pancreatic cancer.

    • Fine Needle Aspiration (FNA) – This is the most commonly used biopsy and can be performed in two ways. First, as described above, this can be done during the EUS. A needle is inserted through the endoscope and through the stomach or duodenal wall. There is no pain associated with this type of biopsy and is the most accurate. Second, a percutaneous FNA can be done by using a needle to puncture the outer abdominal wall, using a CT scan as the guide for the placement of the needle directly into the pancreas. There may be some pain associated with this and a local anesthetic is used.
    • Brush Biopsy - A small brush is introduced through the endoscope to rub off cells from the bile duct or pancreatic duct during an ERCP. The chance of getting a diagnosis of pancreatic cancer with ERCP brushings is generally low compared to other methods.
    • Forceps Biopsy - Forceps are passed through the endoscope and a small piece of tissue is removed. Forceps are an instrument used by a surgeon for grasping or extracting tissue.
    • A biopsy sample can also be taken during surgery.

  7. #7
    Stages of Pancreatic Cancer

    Determining the stage of Pancreatic Cancer can be tricky business and is done by taking all the results from tests listed above and making the determination of stage based on those results. Staging is very important as treatment of PC is often based on the stage. Some terms that you will need to know are:

    Resectable - Tumor is contained within the pancreas, or just beyond, and is able to be removed by surgery.
    Borderline Resectable - Tumor is contained in the pancreas or just beyond, but is growing against or around one of the major blood vessels in the area. Surgery may be possible after chemo and/or radiation.
    Locally Advanced (Unresectable) – Tumor is still contained within the pancreas, but has engulfed the blood vessels that run through the pancreas. A surgeon may perform surgery in this stage only in cases where there is a blockage caused by the tumor.
    Metastatic – The cancer has spread to distant organs such as the liver, lungs, abdominal wall, or distant lymph nodes.

    The stages, in a very brief nutshell are:
    Stage O – Tumor is confined to the top layer of the pancreatic duct cells and has not invaded deeper tissue. Almost none of diagnosed PC cases are found in this stage.
    Stage IA – Tumor is confined to the pancreas and is less than 2 cm in size. It has not spread to nearby lymph nodes or distant sites. Tumor is resectable/local.
    Stage IB - Tumor is limited to the pancreas and measures greater than 2 cm. Tumor is resectable/local.
    Stage IIA - Tumor extends directly beyond the pancreas but does not involve the local arteries (celiac axis and superior mesenteric artery) or local lymph nodes. Tumor is potentially resectable/locally advanced.
    Stage IIB - Tumor may or may not extend beyond the pancreas but does not involve the celiac axis or superior mesenteric artery. Local lymph nodes are involved. Tumor is potentially resectable/locally advanced.
    Stage III - Tumor involves major arteries, the celiac axis and/or superior mesenteric artery (SMA). Regional lymph nodes may or may not be involved. Tumor is Unresectable/locally advanced.
    Stage IV - Primary tumor may be any size. Disease has metastasized, or spread, to another part of the body, including the liver, abdominal wall, lungs, and/or distant lymph nodes. Tumor is unresectable/ Metastatic.

    Follow this link for more detailed information on the staging process.
    Last edited by BobInBonita; 04-03-2015 at 08:33 PM.

  8. #8
    Diet & Nutrition, Support resources, and Hospice/End of Life...coming soon.
    Last edited by BobInBonita; 03-15-2015 at 07:11 PM.

  9. #9
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014

    The following statement and links are from the Pancreatic Cancer Action Network (PanCAN):

    Depending on the type and stage of the cancer, the patient may be treated with surgery, radiation therapy, chemotherapy, targeted therapy and/or palliative therapies. Some patients may receive more than one or a combination of these treatments. Pancreatic cancer clinical trials may also be an appropriate treatment option. The Pancreatic Cancer Action Network recommends that all patients consider clinical trials when exploring treatment options.

    Patients should seek care from hospitals and/or doctors that provide the best quality care. In many cases, this care can be obtained through hospitals or doctors that care for large numbers of people with pancreatic cancer. With more experience, hospitals or doctors may have greater knowledge of the disease and treatment options.

    Treatment by stage
    * Clinical trials
    * Chemotherapy
    * Targeted therapy
    * Immunotherapy
    * Radiation therapy

    * Surgery
    Whipple procedure (pancreaticoduodenectomy)
    Distal pancreatectomy
    Total pancreatectomy

    * Personalized medicine

    * Complementary and alternative therapies

    * Specialists and cancer centers
    Finding a specialist or cancer center
    Seeking a second opinion
    High volume surgery
    Members of the healthcare team

    *Questions to ask the doctor
    Last edited by BobInBonita; 07-08-2015 at 06:22 PM.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  10. #10
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries

    Pancreatic enzyme insufficiency

    Problem: Pancreatic enzyme insufficiency

    Acinar cells distributed throughout the pancreas secrete digestive enzymes that are collected by ever-larger ducts leading towards the main pancreatic duct and the head of the pancreas. The pancreatic duct joins with the liver's bile duct at the ampulla of vater and secretes into the duodenum where both fluids help break down and digest foods.

    There are three types of pancreatic enzymes:
    • Lipase (digests fats)
    • Protease (digests proteins)
    • Amylase (digests carbohydrates)

    Reason #1: Tumor blockage
    Ductal adenocarcinoma tumors (the most common type) will cause ductal blockages. Acinar cells (which produce the digestive enzymes) cannot deliver their enzymes through blocked ducts. Tumors located at the head of the pancreas tend to block larger ducts and cause more digestive problems.

    Reason #2: Partial/Full Pancreas Removal
    A Whipple surgery can remove a large portion of the pancreas and thereby reduce the production of these enzymes. The Whipple removes the head of the pancreas where the larger ducts and most volume of the pancreas are located.

    A distal pancreatectomy and splenectomy removes a tumor located in the tail of the pancreas. Pancreatic digestive enzymes are produced throughout the pancreas so this surgery also reduces overall enzyme production (less so compared to the Whipple). The trunk of the pancreatic duct, common bile duct, ampula of vater, and duodenum are left untouched resulting in less digestive trauma.

    Sometimes oncologists don't think about solutions to digestion problems (as they are focused on tumor treatment). It is fairly common for pancreatic cancer patients to suffer these symptoms without being offered to try enzyme replacements. Many of the symptoms are the same as other pancreatic cancer symptoms, but if enzyme insufficiency is a problem, Creon can significantly improve your quality of life.

    • Yellowish, foul-smelling, greasy, floating stools (evidence of undigested fats)
    • Weight loss
    • Bloating and gas
    • Abdominal pain
    • Diarrhea
    • low levels of fat-soluble vitamins (A, D, E, K)

    Solution: Pancrelipase (brand names: Creon/Ultrase/Zenpep/Zymase)

    Creon is one brand name of artificial enzyme to replace the enzymes the pancreas can no longer deliver. It is made from ground up pig pancreases whose cells have the same ratio of enzymes as humans. There are few (maybe none?) alternatives for lipase. Cheaper(?) digestive enzyme supplements are not tested for efficacy or purity by the FDA.

    Creon drug instructions are largely aimed at patients with cystic fibrosis. Many oncologists seem to have no clue how to use Creon. If you have access to a GI oncology nutritionist, get instructions from them. You need a nutritionist that deals with missing or impaired GI organs and knows how to make up for lost functions. In general, Creon needs to be taken uncrushed, with water and the food to be digested.

    There are likely to be different usage instructions depending upon the patient. A Whipple patient has a different digestive tract than a pancreatic cancer patient before surgery. Some patients may have a tumor blocking the main duct, some blocking a few small ones. Even within Whipple patients, some have a pylorus and some don't which might affect the timing of Creon and food intake.

    More Links:
    Creon Dosing Guide
    Creon Per Meal Dosing Guide
    Video: Exocrine Pancreatic Insufficiency
    Video: Understanding Nutrition and the Role and Benefits of PERT
    Last edited by ddessert; 09-16-2015 at 08:27 PM. Reason: Adding links to extra information
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789


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