Need more information on NET in head of pancreas

@htam4, Hello!
My tumor was in the tail of the pancreas entangled with the spleen, so I had that removed as well. My experience has been - if you have the spleen removed you will need more vaccines ( before the surgery, and then after).
2. Only a NET oncologist can answer that. I have liver metastases, which are followed by CT scans every 3 months
3. I became diaberic after NET, because my pancreas (what was left of it) produces very little insulin, and also the chemo drug I am on ( Somatuline) has blood sugar elevation as a side effect. I am not on medications for diabetes yet, but I can see it coming ...
4. I live in Syracuse, NY. We have a strong Cancer Center and the surgeon who did my operation does robotic surgery now ( Whipple) if the tumor allows. I highly recommend him Dr.Mashaal Dhir- very knowleadgeable, capable and caring!! Good luck! We are strong! 💜🦓

I’m sorry you’re going through this. Everyone’s surgical experience and outcome is unique so it’s difficult to tell you how you will recover and how you’ll feel. A lot depends on how the surgery is performed. Fully open, arthroscopic; enucleation (kind of like taking it out like a melon baller) versus more cutting, etc.
In order to get your questions answered and ensure the best outcome you need to see a net specialist. This is crucial. And you have one of the top net specialists in the country in New York in Edward Wolin.
https://profiles.mountsinai.org/edward-wolin
He treated my husband when he was in Los Angeles and saved his life 16 years ago.

You also should educate yourself as much as possible in this disease so you can be your own strongest advocate. You can begin to learn about this disease from sites such as
http://www.netcancerawareness.org

or

http://www.netrf.org

Best of luck to you!

I would suggest Memorial Sloan Kettering. My surgeon was Dr Michael D’Angelica. My tumor was on the tail. The team at MSK have a number of highly successful doctors who perform over 300 pancreatic surgeries per year. Wishing you all the best.

@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?

@jchady01, welcome. I'm tagging @tomrennie on this discussion as he may have some thoughts and experiences to share with you.

How is your husband doing? Will he be scheduled for surgery?

@jchady01 Here is an explanation of the Whipple procedure:
https://www.mayoclinic.org/tests-procedures/whipple-procedure/about/pac-20385054
I believe that the modified Whipple preserves the stomach. I have a PNET in the body and the tail of my pancreas, so I don't qualify for a Whipple. I also have lesions on my liver. Considering the Whipple does not address the liver, I would ask what the method of treating it would be. I am hoping others that have had the Whipple might share.

Hello @jchady01,.

I would like to join @colleenyoung and @tomrennie in welcoming you to the NETs support group. I see from your last sentence that you asked whether there is anything in particular you should ask about this procedure. This is a great question! Here are some suggestions: First, I would read the information @tomrennie provided about the Whipple procedure. Then make a list of questions that occur.
On Connect, we have a discussion group called: Keys to a Successful Doctor's Appointment
Here is the link to that conversation with a video:
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
In that discussion group, there is an article by a medical oncologist, Karthik Giridhar, M.D, who says the following: “ I love working with engaged patients. Patients that want to make sure that they're understanding why we're doing what we're recommending." Here is a link to her comment: https://connect.mayoclinic.org/comment/1053073/

I would encourage you to familiarize yourself with the Whipple procedure by reading about it, so you feel ready to ask questions. Here is a link with posts by others in the NETs group who have had a Whipple; these posts might help you develop your list of questions. https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I hope that all goes well for your husband. Will you post again with any questions, concerns, or updates?

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 @michaela258, and welcome to the NETs support group on Mayo Clinic Connect. I'm glad that you found this forum. NETs are a rare form of cancer, and we all have questions about treatment and what to expect. We do have many members with Pnets.

Here is a link to a discussion from a member who has NETs on the head of the pancreas:
--Need more information on NET in the head of the pancreas
https://connect.mayoclinic.org/discussion/need-more-information-on-net-in-head-of-pancreas/
I would encourage you to read the posts. I would also like to invite @tomrennie to this discussion. He is also a mentor in the NETs group and has pancreatic NETs. I'm sure he will share his journey with you. I would also like to invite @lindabees, whose spouse has had NETs in the pancreas for many years.

As you are new to this diagnosis, my first suggestion would be to seek out a NET specialist. These are oncologists with specialized training and experience in NETs. Not all general oncologists have expertise with this form of cancer, and it will be to your advantage to have at least one consultation with one of these specialists. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with a listing of NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

How are you feeling, @michaela258. Were there specific symptoms that led to this diagnosis?

@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.