Need more information on NET in head of pancreas

@pamsbass
Hello, I am the wife of someone who was diagnosed 2 years ago with an NET on the pancreas head at 43yo. With small liver lesions as well with just watching it/then the last two years. It has now grown to 2.5cm and He’s being sent for more lab work and and a PET scan with follow up to talk about surgery. We were told in the beginning that if it grew to cause problems an needed surgery he would need a whipple. What made yours a modified whipple. I did some research two years ago but I’m anxious currently since the “news” is new again. Thinking we wouldn’t need surgery hopefully ever. Is there anything I should particularly remember to ask?

I found out the PNET (pancreatic neuroendocrine tumor) on the head of my pancreas last year in May during an MRI scan for my kidneys. It was an incidental finding.

After multiple imaging including a dota-tate scan in September, the specialists at Johns Hopkins told me to wait six months and do another PET scan, since it was small and the tumor is well differentiated (slow-growing).

However, my abdominal pains and back pains come occasionally. I attended a lifestyle center program on disease reversal and since then I noticed that with diet and lifestyle changes, symptoms are almost next to none. If it wasn't for that MRI scan in May, they never would have known about the PNET and would have constantly given me anti-acids.

Today, I rarely have symptoms thanks to a lifestyle change. I'm learning a lot more about PNET after signing up for a group and they sent me reading materials. There is still a lot to learn, especially with insurance coverage and different hospital's procedures.

Finding the right doctor definitely helps: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

@bellom Good day,

I am reading your post in the discussion and would like to join in. I have been diagnosed with a well-differentiated tumor in the head of the pancreas. I am currently awaiting a biopsy, and the next steps in treatment are still not yet clear.

I would be grateful if you could share your experience with treatment, procedures, and any dietary advice or recommendations that helped you during your therapy.

Thank you.

@pamsbass Hello,

I noticed your post. I’m in a similar situation, as I’ve recently been diagnosed with a lesion in the head of the pancreas. I’m still at the beginning of the diagnostic process and currently waiting for a biopsy.

I would like to ask about your experience regarding the course of your examinations and treatment so far. Did you eventually undergo surgery, or are you considering it? Or have you been placed on a different treatment plan?

I am also trying to understand all available options, as I would prefer to avoid surgery if possible, although I am aware that it is often considered the standard recommendation.

I would be grateful if you were willing to share any information with me. Thank you very much in advance.

@hopeful33250 Hello,

Thank you very much for your feedback and for taking the time to respond. I truly appreciate it.

I live in a smaller country where access to highly specialized doctors is limited, and it is likely that we do not yet have the same level of technology or treatment protocols that are available in your country. Because of this, I am very grateful to be able to connect with you and learn from your experience. It helps me understand whether I am on the right path or if there may be alternative treatment options worth considering.

At the moment, I would also like to ask about the biopsy, as I am receiving two different opinions. One is that a biopsy is necessary to properly determine the aggressiveness of the tumor, while the other suggests that it could potentially be risky if the tumor is punctured. I am not sure what the standard approach is in cases like this, and I would really appreciate hearing how this is typically handled in your experience.

If you are willing to share, I would be very grateful to hear how this was managed in your own case.

Thank you very much again for your time and support.

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 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.

@hopeful33250 Hello,

Thank you very much for your feedback and for taking the time to respond. I truly appreciate it.

I live in a smaller country where access to highly specialized doctors is limited, and it is likely that we do not yet have the same level of technology or treatment protocols that are available in your country. Because of this, I am very grateful to be able to connect with you and learn from your experience. It helps me understand whether I am on the right path or if there may be alternative treatment options worth considering.

At the moment, I would also like to ask about the biopsy, as I am receiving two different opinions. One is that a biopsy is necessary to properly determine the aggressiveness of the tumor, while the other suggests that it could potentially be risky if the tumor is punctured. I am not sure what the standard approach is in cases like this, and I would really appreciate hearing how this is typically handled in your experience.

If you are willing to share, I would be very grateful to hear how this was managed in your own case.

Thank you very much again for your time and support.

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.