Anyone out there have PNET experiences and outcomes to share?

Hello @outlawcancer and welcome to Mayo Connect. I can certainly understand your feelings after having a pNet discovered and now waiting for the tests results to come back certainly adds to the stress. I see that you will be having a PET scan in two weeks. This test will be helpful to your medical team.

Here is some information on this type of cancer from Mayo Clinic's website,
--Pancreatic Neuroendocrine Tumors
https://www.mayoclinic.org/diseases-conditions/pancreatic-neuroendocrine-tumors/symptoms-causes/syc-20352489
On Connect there is another discussion group on pNet. Here is a link to that discussion:
--Pituitary and PNet
https://connect.mayoclinic.org/discussion/pituitary/
I would like to invite @sturns to discuss his pNet experience with you.

You mentioned that abdominal pain brought you to the ER. Have you had other symptoms? Has blood work been done to evaluate pancreas functioning?

Hello thank you for the reply. Yes I’ve had other symptoms for the past 2-3 years. They were mostly pain in my mid back. My Dr’s kept dismissing lot of these pains as GERDS or heartburn. But I knew there was more going on. Sometimes it’s hard to convince medical professionals that what you feeling is more than just what they diagnosis is. I’ve been in the ER once before in 2020 for the same type of pain. However the images at that time did not show any type of mass. That time it was dismissed as pancreatitis with high amylase levels of 149. Year later here we are the mass measures 2.1cm x 1.3 cm .

@outlawcancer,

It sounds like you have been working on this diagnosis for a while, now. This is very typical of neuroendocrine tumors. Many members in this discussion group were misdiagnosed for a number of years before their NETs were finally diagnosed, it is unfortunate but just recently, NETs are being recognized and diagnosed earlier than they were previously.

Do you live near a renowned cancer center or a university medical center? If so, it would be in your best interest to consult there once you have your PET scan results. As NETs are a rare form of cancer, general oncologists often are not experts in the treatments for pNets.

It will also be to your advantage to learn as much as possible about NETs. I recommend the Carcinoid Cancer Foundation website as a good resource for more detailed information and perhaps as a way of finding a NETs specialist nearby. Here is the website, https://www.carcinoid.org/for-patients/. Look at the icon on the top of the website that says, "For Patients." When you click on that you will find a lot of information that will lead you in the right direction for treatment and provide you with good questions to ask when you meet with your doctor.

When is the PET scan scheduled?

My PET scan is scheduled for December 20th. Also have surgery schedule for January. My insurance won’t cover a specialty Dr outside of my network. I would have to pay cash out of pocket.

@outlawcancer

I understand about insurance coverage. I would encourage you to learn as much as you can about pNets so that you can ask good questions of your doctor.

After your PET scan, will you have another appointment with the oncologist or surgeon where you can get more information and/or ask questions?

Yes, for sure. My Dr is pretty good at getting back to me after I email her. I have more questions written down to ask of her.

@outlawcancer
Also, most insurance companies will pay for a second opinion if you ask. You might check this out as well.

Will you keep posting your questions and concerns?

Outlaw, my wife has almost the same area of pancreas with NET’s mass diagnosed last April. She is in her 7th cycle of chemo(pill form), and has achieved almost 70% reduction in size in both her pancreas and liver, allowing for surgery to knock it down even more in January 2023. You will find research and your doctors will explain that NET’s generally has a good prognosis but a lot of hard work to get there. Be positive, get good medical advice, you will make it!

I was diagnosed with a NET on the head of my pancreas at 42, after 6 years of worsening symptoms many visits to the GP, two ER visits a few misdiagnosis. I was shocked and terrified when I was told a CT scan showed a NET on my pancreas. I initially discussed with three surgeons that all thought it should stay in as where it was made the surgery alot more difficult, one even said it would be easier to remove if it was on the tail, I don't know if that is correct or not. I had whipple surgery after seven years of watching it and my primary NET didn't really grow but had two new growths on my liver that were removed at the same time as well. For me I had a lot of improvement in my quality of life after surgery. All previous symptoms were gone after surgery. I am now three years after surgery still feel good, waiting for a PET for a new spot on my liver. I know the surgery for the tail is very different then mine, but I did the wait watch approach and wish I would have had surgery earlier based only on how much better I feel after surgery. I am also hopeful after reading posts from others who have managed for years after a NET diagnosis.

@kim1965, thank you for the encouragement. It’s been a roller coaster of a ride for me. Having 3 young boys devastates me that there’s a chance I may not be around for them. I love to hear success stories, I wish the best for you and the wifey. Thanks for your reply.