Need more information on NET in head of pancreas

@kaiulani sorry to hear Carol can I ask what city you are in I’m in Edmonton I am going for a Gallium 68 scan this morning I have a mass in retroperneal area that was not reported back in Feb 2025 on a ct scan a radiologist just found it on my 6 month follow up behind pancreas I had a net removed from my lung in Nov.

Hello! My name is Carol, I live in Alberta, Canada where options for my treatment have (unfortunately) been very limited and ( even more unfortunately) I honestly think that my disease has long ago already progressed too far to allow me to benefit from anything that’s on offer here. I continue to lose weight steadily, no matter what I try to eat & my cancer pain (despite using opiates) is fast getting completely unbearable. I’ve finally been referred for an assessment at a pain clinic in my city, but I don’t know whether I will even be accepted there as a patient. I was diagnosed with stage 4 NET, primary tumor in pancreas but there’s suspicion that I might’ve had it elsewhere too, as my liver has always been “fully involved” which many more lesions of a higher grade than those in my pancreas. I also have NETs in my small bowel & in my skull. Please let me know what sort of information you are specifically interested in receiving, as I don’t want to burden you with extraneous stuff that you might already know all about. I wish you the best of luck with your situation. Best Regards, Carol

Hello everyone,

I was recently diagnosed with a neuroendocrine tumor (NET) in the head of my pancreas measuring about 1 cm. At the moment, I have a PET scan and CT scan scheduled, followed by a biopsy of the tumor.

I would like to ask if anyone here has experience with this type of diagnosis and could share what usually happens next. What kind of treatment did you go through? What symptoms should I expect, if any?

I am also very worried about my prognosis and life expectancy. I know every case is different, but I would appreciate hearing from people living with a similar diagnosis and how long they have been able to live with this condition.

Another thing that confuses me is that my doctors have not explained much to me yet, so I still do not fully understand whether this is considered cancer or something different.

Thank you to anyone willing to share their experience or advice.

Hello, I'm sorry to hear what you're going through. Let me share my wife's experience. She had a neuroendocrine tumor of the pancreas, secreting ACTH. In addition to the tumor itself, this caused her to develop ectopic Cushing's syndrome. The tumor was 2 cm in size, located in the head of the pancreas, and a biopsy was performed using a fine-needle aspiration endoscopy. The result was a grade 2 neuroendocrine tumor.

Since it was a functioning tumor, and the Cushing's syndrome was significantly impacting her quality of life, after a meeting between endocrinologists and a pancreatic surgeon, it was decided that the best course of action was to remove the tumor.

Four months after the diagnosis, in March 2024, the tumor was enucleated, and thankfully, everything went well. Today, she has recovered from Cushing's and has checkups every six months. Fortunately, she remains stable so far, with no signs of disease. She did not require chemotherapy or radiation therapy.

Regarding your question, I think it's important to have a biopsy to determine the type of tumor, its grade, and other relevant factors.

Well, I've shared my experience with you, and especially my wife's. I wish you the best of luck on this journey.

Sorry for my English, i used google translator

Hello everyone,

I was recently diagnosed with a neuroendocrine tumor (NET) in the head of my pancreas measuring about 1 cm. At the moment, I have a PET scan and CT scan scheduled, followed by a biopsy of the tumor.

I would like to ask if anyone here has experience with this type of diagnosis and could share what usually happens next. What kind of treatment did you go through? What symptoms should I expect, if any?

I am also very worried about my prognosis and life expectancy. I know every case is different, but I would appreciate hearing from people living with a similar diagnosis and how long they have been able to live with this condition.

Another thing that confuses me is that my doctors have not explained much to me yet, so I still do not fully understand whether this is considered cancer or something different.

Thank you to anyone willing to share their experience or advice.

@dtkach37
Thank you for responding. Just a little background on my situation. I had a Pnet removed from my small intestine along with part my ascending colon and the removal of ileocecal valve in 2004. I also had my gall bladder removed 2022 although not malignant in anyway. I did not ever have chemo treatments or something similar. I received Octreotide scans for 2 years and then did my annuals every year. Last October my Chromogranin A test came back high for the 1st time in 25 years. The test led to a discovery of the two slow growing tumors currently in my pancreas. I mention this so hopefully you will be diligent in your ongoing testing, obviously it was important to me. I'm seeing a surgeon on Monday to get his opinion on whether surgery is even an option and to what end. He may agree that my best course of action is to continue the Lanreotide injections and then so be it. But with that being the course of action it resigns me to play for a draw. Meaning, To keep the cancer a bay. My personality is not a guy who plays for a draw, so that's why i appreciate you posting, as our cases seem similar in many aspects. Thank you and continued good health.

I did have a PET scan prior to surgery to confirm there were no other tumors other than the head of the pancreas and ampula and specifically to make sure that the liver was clear which it was. Because the NET was well differentiated both the medical and surgical oncologist agreed that surgery with no chemo or radiation would be the best option. I have had a CT scan in March to confirm it was all removed and will have another at the end of June. Ultimately, I had 25% of both my stomach and pancreas removed along with my gall bladder and 12" of my duodenum. after 3.5 month I am feeling fine, playing golf at the same level I was before surgery and maintaining my new weight (lost 20-22 lbs). I'm still on Creon but only for lunch and dinner and I am hopeful that I will be off of them at some point.

Hello everyone,

I was recently diagnosed with a neuroendocrine tumor (NET) in the head of my pancreas measuring about 1 cm. At the moment, I have a PET scan and CT scan scheduled, followed by a biopsy of the tumor.

I would like to ask if anyone here has experience with this type of diagnosis and could share what usually happens next. What kind of treatment did you go through? What symptoms should I expect, if any?

I am also very worried about my prognosis and life expectancy. I know every case is different, but I would appreciate hearing from people living with a similar diagnosis and how long they have been able to live with this condition.

Another thing that confuses me is that my doctors have not explained much to me yet, so I still do not fully understand whether this is considered cancer or something different.

Thank you to anyone willing to share their experience or advice.

I was diagnosed in November with a 5.5CM NET at the head of my pancreas and a 1.2CM NET on the ampula. They were found incident to a CT scan I had for a sciatica issue so I was having no symptoms although the larger one may have been contributing slightly to my back issue. NET is the best pancreatic cancer you can get with a much higher survival rate than typical carcinoma. I had a biopsy which was used to diagnose the grade to determine their rate of growth. The smaller one was 1%, the larger was 5% and I was given a WHO Grade 2 which basically meant it was slow growing. (I did develop pancreatitis after the biopsy and was hospitalized for 3 days. I think something got nicked and leaked but I have never gotten a full explanation) Although I had no symptoms, I was assured I would in a few years and decided to have the surgery now while I was younger (66) and not experiencing any negative symptoms. I had the Whipple Procedure in February to remove it. The procedure is major but after 3.5 months I have recovered almost completely and have no regrets. With the small size of your tumor maybe your procedure would be different. Because NET's are rare, everyone I asked emphasized seeing someone who specializes in NET's. I live in Nashville, TN and was fortunate Vanderbilt has 3 doctors that do NET's fairly routinely. Hope this helps.

Hello everyone,

I was recently diagnosed with a neuroendocrine tumor (NET) in the head of my pancreas measuring about 1 cm. At the moment, I have a PET scan and CT scan scheduled, followed by a biopsy of the tumor.

I would like to ask if anyone here has experience with this type of diagnosis and could share what usually happens next. What kind of treatment did you go through? What symptoms should I expect, if any?

I am also very worried about my prognosis and life expectancy. I know every case is different, but I would appreciate hearing from people living with a similar diagnosis and how long they have been able to live with this condition.

Another thing that confuses me is that my doctors have not explained much to me yet, so I still do not fully understand whether this is considered cancer or something different.

Thank you to anyone willing to share their experience or advice.