Pancreatic Neuroendocrine Cancer vs. Pancreatic Cancer

What is the difference between a pancreatic neuroendocrine tumor and a pancreatic tumor?

A few high profile celebrities, Aretha Franklin and Steve Jobs, have died from pancreatic neuroendocrine tumors. Following their deaths, their cancer was often called “pancreatic cancer” because it was cancer and it occurred in the pancreas. Why is this wrong?

Though they occur in the same organ, these are two different types of cancers. Pancreatic adenocarcinoma and neuroendocrine cancers have different:

  • Causes
  • Signs and symptoms
  • Tests
  • Treatments
  • Outlooks

Pancreatic adenocarcinoma

Pancreatic adenocarcinoma is often referred to as “pancreatic cancer.” It starts in the exocrine cells, which produces enzymes to support digestion.

Pancreatic adenocarcinoma

  • More common
  • Poorer chance of recovery
  • May not cause early symptoms. Advanced signs and late symptoms include:
    • Jaundice (yellowing of the skin and whites of the eyes)
    • Light-colored stools
    • Dark urine
    • Pain in the upper or middle abdomen and back
    • Weight loss
    • Loss of appetite
    • Feeling very tired

Pancreatic neuroendocrine cancer

Pancreatic neuroendocrine cancer is sometimes called islet cell carcinoma. It starts in the endocrine cells, which produce hormones to regulate blood sugar.

Pancreatic neuroendocrine cancer

  • Less common
  • Better chance of recovery
  • Tumors may produce hormones and cause early symptoms, such as:
    • Diarrhea
    • Indigestion
    • Blood sugar changes
    • Weight loss
    • Stomach pain
    • Jaundice (Yellowing of the skin and whites of the eyes)
    • Skin rash on face, stomach, or legs

Where is the pancreas?

The pancreas is in the upper abdomen behind other organs such as the stomach, small intestine, liver, gallbladder, spleen, and bile ducts. It is about 6 inches long and shaped like a thin pear lying on its side.

What does the pancreas do?

The pancreas has two components:

  • Exocrine pancreas produces enzymes that break down food in the small intestine
  • Endocrine pancreas produces hormones that regulate blood sugar

Endocrine cells of the pancreas

The endocrine pancreas consists of endocrine cells that are arranged in “islets” and release hormones into the bloodstream. Neuroendocrine tumors arise from endocrine cells in the pancreas, which cluster together like an island and are called islet cells. These cells play an important role in regulating the body’s blood sugar.

One type of pancreatic neuroendocrine tumor, insulinoma, may lead to too much insulin and cause blurred vision, headache, fast heartbeat, and feeling lightheaded, tired, weak, shaky, nervous, irritable, sweaty, confused, or hungry.

Another type, called glucagonoma, can cause high blood sugar and cause headaches, frequent urination, dry skin and mouth, or feeling hungry, thirsty, tired, or weak.

What is a neuroendocrine tumor?

Neuroendocrine tumors (NETs) are an uncommon cancer of the neuroendocrine cells, which receive messages from the nervous system and then release hormones into the bloodstream. When a neuroendocrine cell becomes cancerous, it divides uncontrollably, without stopping, forming tumors.

Primary sites for neuroendocrine tumors

NETs can occur throughout the body, but most commonly form in the:

  • Gastrointestinal tract
  • Pancreas
  • Lungs

Since they arise in hormone-producing cells, a neuroendocrine tumor can overproduce hormones and release them into the bloodstream, causing a range of symptoms. These symptoms are commonly mistaken for other conditions such as irritable bowel syndrome, colitis, asthma, or menopause. One in two neuroendocrine tumor patients is misdiagnosed. On average, people have symptoms for five years before learning they have a neuroendocrine tumor. When it takes that long to obtain an accurate diagnosis, cancer can spread to other organs. More than half of NETs spread beyond the primary site before they are diagnosed.

Why does it matter? Raising awareness

Given delays in diagnosis, rates of metastases, and misdiagnosis, those affected by NETs advocate for increased education and awareness.  Advocates for improvements in NET diagnosis and treatment stress the importance of referring to the cancer type, not site. No matter where it occurs, refer to this cancer as a neuroendocrine tumor to increase awareness for a misunderstood cancer.

Read more about pancreatic neuroendocrine tumors.
Browse NET patient videos on our YouTube channel.
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James Dadge

thanks for this article Lauren. I was diagnosed with a Pancreatic NET on 17th October. I am under the care of Dr Hubner at the Christie in MAnchester, UK. It is quite difficult to get to grips with the diagnosis and treatment options. I found your article very useful. Thanks. James

Sue

Hello, how are you? I have the same diagnosis and I am at the Christie too

Nan

I am British also but live in the U.S. I also have NEC in the pancreas with Mets to the liver, I am being treated with Octreotide shots monthlywhich have shrunk the liver tumours but not the pancreatic one which is about the size of a quarter or a British pound coin. Since the treatment started about a year and a half ago it has not grown. I am researching NEC to find out more about it. I hope you get my email address as I would like to correspond more with you.

jim

Did you get the tumor removed from the pancreas? I have the same thing and had a whipple surgery to remove the tumor.. I have a blog, fightwithjim.com

Craig

Hey, I had a cyst in the head of my Pancreas. I had a Whipple @ U of MI. I had the cancer from 8,2o12 to 6,8, 2015, maybe longer. I poop alot each day and have diabetes 2. It took so much work 2 just recover, still not 100% Iam 62 now, I feel crappy most days and I keep going. Craig

Rose Ann favels

Thank you so much for this valuable information . My son in law Aaron Demuth was diagnosed with neuroendocrine pancreatic cancer a little over a year ago at the age of 29
The information you share gave me a better understanding of this horrible disease. I am a RN ,
The level or information was effective yet very easy to understand and follow for non medical individuals as well
I have shared this on my face book page
Thank you
Rose Ann Favela

Valeri

How is he doing now? My husband is 31 and just diagnosed. I am a RN as well I would love to connect with you.

Celia

How’s your husband doing? My husband is also 31 and just got diagnosed!

I was initially diagnosed with BAC left lung 11/10. I had no symptoms other than bad gas, and some indigestion issues. Left upper lobectomy, 12/16/10. Told for 1 year I had Intestinal Inflammation (Dr. Roland Garretson University of MS Gastro Dept.) At 1 year Cat Scan apparently, the Pancreatic Neuroendocrine Tumor was “visible” Whipple 4/3/12. 45% of Pancreas, Duodenum, Gallbladder and 12 liver ablations (No liver involvement was seen prior to surgery.) I was told the BAC and PNET had “no relation to each other.” I have been on “som” (now at 30mg every 3 weeks) since 8/12. I am… Read more »

Bravo Lauren,
Finally, your well written paper describes the difference between Pancreatic Tumors. I would like your permission to post your paper on our MEN website. Please advise. I talk to individuals all the time explaining the difference. Thank-You for the Steve Jobs info once and for all perhaps dispelling the myths that surround his illness.

Linda Hageman, RN
Founder
Executive Director
American Multiple Endocrine Neoplasia Support

I am amazed that there are so many different types that there are, and even more amazed that my Husband has not been told the exact type that he has! All we have been told is that it is a Pancreatic NET!

David

I was diagnosed in November of 2014 with a Pancreatic NET. I was informed by a surgeon that it was common and “most people have these and just don’t know they do” and not to worry about it. I recently went in for a followup EUS and have a different physician that is now informing me about laparoscopic surgery. I still do not know what type, function, or any other information besides it is a NET. It was biopsied in 2014 so I would hope they would be able to tell me more about it. After researching it on the… Read more »

Judy

My husband was recently diagnosed in mid February with NET. We still do not have knowledge of grade, functioning or non-functioning other than Stage IV metas to liver.

Jeffrey Feuer

I was diagnosed with pancreatic neuroendocrine cancan of the pancreas, liver, and kidney in Nov 2012. I was told I was inoperable and should go home as I would die in the near future. I went to an alternative doctor and received large doses of Vitamin C, Milk Thistle, and Alpha Lipoic Acid through the port in my chest. I was then referred to a doctor in Germany that used TWO FDA APPROVED DRUGS TOGETHER TO STOP THE CANCER. In the US the FDA prevents this use, despite that the two drugs are approved. The first treatment put me in… Read more »

George

Hello, can you give more details? Where in Germany? Which 2 FDA approved drugs? Thanks!

Pat

Did you get an answer? My ONC wants to give me somatostatin analog shots. Have you heard of that?

B. Russell

Where do you find physicians who are prepared to provide information, diagnosis and treatment without going to Europe? Are there regional centers, by states, or are they in specialized-research-university based locations. Thanks for any resources available to us to review.

Please visit our doctor database in order to search for physicians by state or region. https://netrf.org/patient-resources/doctor-database/

Lisa

Please could you give more details,where in Germany and which 2 drugs.My husband has the same cancer and locations as yourself.
Many thanks

Louisa Hart

Hi – just read about your treatment in Germany………….. can you tell me where and what the 2 drugs are that were prescribed? I too have recently been diagnosed with a pancreatic NET and am looking for alternatives to surgery.

Liz

Hi
I wonder if any one got a reply about the two drugs and the place in Germany.cant find it anywhere on this site which I have only just come across.Also is the place in Germany the Bad Burka. And is the doctor Professor Baum.?
Would be grateful for any feedback.
Thanks
Liz

jason

hi what is this treatment could you let me know thanks

Lisa Mionie

Please, could you name the drugs you were given in Germany ?
This info would be potentially so crucial to help those with this particular cancer.

I wish you health and a long life.

Lisa Mionie
lmionie@gmail. com

Alison

May I ask who in Germany helped you?

David Hatton

Hello,
I was alerted by your remarks of your illness and the help that you received in Germany. My 17 year old son has the same type of cancer and has only been given a short time to live, therefore any help or advice would be greatly appreciated.
Regards
David Hatton.

David

Jeremy, I have a friend that was just diagnosed with the same thing you have.he is about to start chemo and then surgery…I would like to talk to you if possible thank you. David Thomas

Tonya R

Hope you are doing well I lost my 29-year-old daughter within 18 months of diagnosis she had surgery and chemotherapy she fought so hard I miss her terribly, hugs and god bless you

Ray

Who is the Dr. in Germany ? How do you get in touch with that Dr. ? Thank You.. Ray

Shelly

Where did you go in Germany and who treated you? I hope you are doing well and completely cured!

B. Russell

Where do you find physicians who are prepared to provide information, diagnosis and treatment without going to Europe? Are there regional centers, by states, or are they in specialized-research-university based locations. Thanks for any resources available to us to review.

Pat

I know that Stanford, UC Davis Medical Center and UCSF all have cancer specialists who deal with PNET. Where do you live?

Briana

Thank you so much for this article! I am diagnosed with MEN 1, but also have a family history of Pancreatic Cancer on the other side of my family. Understanding the difference between the two has helped to alleviate some concerns regarding increased risk for either type of cancer.

Thank you for sharing this very distinct difference between the two types of pancreatic cancer. It is so important that patients battling pancreas cancer understand what kind they have and what their best treatment options are. Luckily, there are many treatment options for pancreatic cancer, both surgical and non-surgical, that patients and their pancreas physician can discuss as a way to regain a happy and healthy pancreas.

Pat

I was diagnosed with pancreatic neuroendicrine cancer in 2/14. 1/3 of pancreas and spleen taken out. No other treatment but I have had CT scans every 6 months since. I recently started seeing an ONC that deals with this cancer and he suspects a reoccurance. I am being sent to Stanford for a Galleum 68 scan (same center Steve Jobs went to) in a few weeks. Scared to death. Nauseous, discomfort, some pain. If you have PNET see an ONC that has experience!! Does anyone have a similar experience?

Debra

I honestly am confused .. my boyfriend was diagnosed in April of stage 4 Neuroendocrine tumor of the pancreas and spread to the liver .. he’s had to treatments of chemo but now his bile duct is been compressed by the tumor and need to have a stint put in to open it up .. the two tumors in his liver have grown.. very worried ..

Robert

My cancer is presently in remission however I am concerned about reoccurrence. I have had 2 NET tumors removed from my pancreas. The first malignant stage 2. The 2nd benign. They removed 1/2 of my pancreas, my spleen and sarrounding lymph nodes. They showed no metastasis however I was told it would probably come back. My question is what are my chances of return and matastasis.

My father has gone through something similar in April 2017. No chemotherapy or radiotherapy was given after the operation. Have heard there are drugs given in the case of stage 4 along with chemotherapy.

Deborah E. Ryan

Lauren, Thank you for your article.My nephew was diagnosed in late September of this year and had surgery at Allegheny General in Pittsburgh,PA. He died November 18th of complications of the surgery,namely hemorrhage.In his last week,he was administered 22 units of blood.He under went an exploratory laparotomy and the bleeding location could not be found.His wife and my sister-in-law demanded an autopsy to further evaluate the cause of his death. I am sad to say that we bury my 37 year old nephew tomorrow and he leaves behind a beautiful wife and 2 young sons, ages 6 and 8. We… Read more »

Montoya Watkins

Hello everyone, My sister in law is 22 yr old. she has Fowler syndrome. Which means she cant urinate on her own. shes been dealing with the Fowler since she was 16yrs old. Recently within the past 5months more things have been going on. She been having blood in her stool, Her menstrual cycle lasted from September 18-November 20th. She had hair lose constant rashes and acne. Today her face has broken out really bad and also has swelling in her lips and lower face. The doctors that shes seen cant tell her anything. They have told her she will… Read more »

Eli

I was diagnosed with an inoperable pancreatic neuroendocrine tumor on June 6, 2016. On August 3 I got my first injection of Octreotide, a hormone that is designed to stop the tumor from growing. I feel great and have gained back 20 of the pounds that I lost (to the point where I don’t want to gain back any more weight) and my blood tests have all come back normal (other than an A1C level of 6.4 which makes me pre-diabetic.) I had a scan last week that I will learn the result of this week to see if it… Read more »

Mon

Hi Eli I also have a neuroendrocrine pancreatic tumor and I recieved lutecio 177 octreotide on Oct, please can I ask you how it goes with your treatment?

Robert Douglas

My wife has been diagnosed with small cell cancer that was first found at the top of the pancreas this started right before Christmas with her being dizzy then progressed to her not being able to walk and then not being able to swallow then they found a mass on the top of her pancreas did a biopsy and said it was small cell cancer could this have been misdiagnosed

Ines

I am diagnosed with neuro endocrine benign pancreatic tumor, I’m scared and nervous, worried a lot…pls give me advices. Thank you!

Hope

Pretty! This has been a really wonderful post. Thank you for providing this
information.

Andres

My dad was recently diagnosed with adenocarcinoma of the pancreas. The first biopsies gave us a result of adenocarcinoma mod differentiated. He had a duodenal bleed recently and the biopsy results showed poorly differentiated adenocarcinoma that had invaded the duodenum. However, we sent for immunohistochemisry studies and they revealed NET. This is very confusing. The cancer is behaving like adenocarcinoma as it is very invasive. It is a big tumor as well measuring 7 cm at the head of the pancreas and it has apparently spread to the liver and lungs. If anyone has any input about this, it would… Read more »

K E

Hi there,

I have a friend that was just diagnosed with close to the same thing, but the cancer is in his abdominal wall, not lungs. Did you find out any other answers to this or treatment?

Elma

Hi Lauren, I am so thankful for this explanation because it is difficult to explain to the ones who are not informed properly. I was diagnosed with NET in 2010. The doctors discovered a tumor in my liver and from there a whirlwind of treatments. Fortunately, I was introduced to a very special oncologist who just looked and looked for ways to treat me. I have had chemotherapy, cyberknife treatments, Y-90 treatments, and three major surgeries ( one was a Whipple Surgery) I have had most of my treatments at the Norris Cancer Center at the University of Southern California;… Read more »

Stan

I am being treated for a pancreatic neuroendocrine tumor that was removed from my pancreas via a Whipple operation but it spread to my liver. The tumor to date has no progressed. If there is some effective drug in Germany it should be shared with others else don’t mention such things. My injections are every 30 days, they are not painful when the nurse sprays freezing solution on the area.

Paul

Stan I’m not sure about you, but every time I get a injection I have a bad stomach for a week, then as the therapy is wearing off towards the end of the month, you start to feel sick as well you can win

Mark

Thanks for this highly informative article. One of the best that I have seen.

Paul

Thanks for the information you have put up here, even for those of us in Australia, there is very little information, and I wonder everyday if today is the day I will be called to come home.

Glu-hormone readings best ever was at 186,000 surely I should have won a prize for that alone.

Cancer is the worst, but Epilepsy isn’t that good either, the sooner that this ride is over the better, the waiting is the worst part.

Hopefully, this cancer will take me from this earth.

David

Have you connected with Australia’s http://www.unicornfoundation.org.au

I do not believe there is very little information.

Good luck Paul. Knowledge is the key. Please see above

Brittany

My mother did a biopsy on her liver last week and got her results back today. They suspect Neuroendocrine carcinoma. She goes to her oncologist tomorrow. I’m scared to death. I don’t want my mother to die before I walk down the aisle OR graduate college. I cry in the shower and pray for everyday, but it seems like it’s not working . She has a small (2cm) mass on the head of her pancreas and liver masses on her enlarged liver. She bloated, NO JAUNDICE, constipation every 3 days, vomiting whenever she’s constipated. Whenever she does go to the… Read more »

Bibi

I was diagnosed in 2010 with a neuroendocrine tumor (islet). I believe it is the same one that Steve Jobs had. We contacted M.D. Anderson Cancer Center in Houston and were assigned a doctor who performs operations on patients with pancreatic cancer almost on a daily basis. He cut out most of my pancreas. I developed diabetes after the surgery – but I was alive. I go in for check-ups every year. So far, I’ve been lucky. Nothing else has developed.

Really glad to hear about your health. Could u help me out by sharing the details of your doctor. My dad has been diagnosed with the same thing. Please help me out.

Mary jo

I was diagnosed with a NET, gastrinoma in 2005. Received a whipple and liver resection. Radiation to my leg for bone mets.cancer was quiet for long time. Past 3 yrs have had 3 liver ablations preparing for my next. My Dr and team are at university hospital, cleveland. I take zenpep,have been able to have a very active life.definately blessed. My advice is know your diagnosis and be an active part in your treatment.

Karen

My husband had surgery to remove a pancreatic endocrine tumor, non malignant. He has recovered remarkably well with the exception of clear fluid collecting near the pancreas and requiring a drain in his chest. It has been several weeks but the output has not slowed down. Dr tried putting in a stent to redirect fluid which failed to work as it migrated and was eliminated. Next course of action is to inject octreotide I told his stomach daily. Does anyone have any experience with this.

cindy

my son was diagnosed with carcinoid tumor with cushings in his lung 8 years ago. they believed that it probably had been misdiagnosed for years. they removed the upper left lobe and lympnodes in his chest. this was all done in GA. He now lives in Nevada since the drier desert air seems to be better for his breathing. he has been to many doctors here in las vegas and the opinions are from one end of the spectrum to the other. some believe his NETs have come back with a vengence in several areas, and some believe he has… Read more »

John

Thx for your article. I am a 5.5 year pancreatic survivor and you provided excellent data on why I am surviving. My cancer tumor was in a bile duc and was diagnosed in stage 2 when I went to my doctor to check on some unexpected jaundice. I changed my diet and exercise consistently which minimizes a reoccurance. Also, I became a personal trainer for cancer survivors and my cancer experience gives me strong market crediability…now cancer is working for…not on me! Keep up your terrific work! I am 75 years old…

[…] a more detailed comparison, see this excellent article from NET Research […]

Fiona

Hiya I am 32 and was diagnosed with PNET cancer at 28 in head of pancreas when pregnant. I had my baby 10 weeks early and an attempted Whipples in this country but it was unsuccessful. I had Octreoride injections, Chemo (unsuccessful and wrongly given) and Nanoknife, also unsuccesful. We researched and found Dr Buchler in Heidelberg, Germany. He operates on ‘non operable tumours ‘ and performed a Whipples on me. He has the expertise, and so much knowledge . Please research him and contact him to see if he can help. Good luck to you all x

Mon

Can somebody that has recieved lutecio 177 for pancreas neurondocrine tumor can get in touch with me please dondeandan@gmail.com

Pancreatic Neuroendocrine Cancer vs. Pancreatic Cancer