Just diagnosed with PNET: Any thoughts on watch & wait approach?

Hi vtn
I am sorry that this has happened to you. I am glad you saw a NET surgeon. I would suggest you see a NET Oncologist. This will help you to make important decisions. I was 57 when I had a 6x7 mm tumor found mid pancreas in 2017. I have lots of underlying conditions and my GI Dr was all for getting it removed. Most pancreatic NETs are non-functional and due to the size won’t show up on MRI or CT’s. But you should have a Gallium 64 or CU64 scan just to be sure. NET cancers are cancerous, but slow growing. Ki67 1< is a slow growing cancer. PET scans should usually show these as well. Back to my story. I had a regular surgeon in 2017 and he prepped me for a Whipple and could not find the tumor and removed the neck of my pancreas. It was a tough recovery . The. In 2018 I had a PET and it was still there an growing. I waited until 2019 and went to surgeon and NET Oncologist at Mayo Jacksonville Dr.Starr and had the surgery to remove the remaining tail of the pancreas and they found another primary net on the head of the pancreas as well. I had a modified Whipple and I currently have no evidence of disease.
If you are wondering what is right, please get a second/third opinion to help you make this decision.
Also do your research.
Join Facebook group like NCAN, Dr Liu’s Zebras, A Neuroendocrine Cancer Community, Neuroendocrine Cancer Ronny Allen’s group. Also Carcinoid Cancer Foundation CCF. Wishing you the best and I am available, if you have any questions.

Thank you for your reply.
Did you have a Gallium 65 dotatase PET scan before you had your first surgery? I am going to have one soon.
After your first surgery, you said you had another PNET discovered in the head of your pancreas during the second surgery?
Did the PET scan miss the 2 other PNETs?
How much of your pancreas is left?
Do you have one of the syndromes associated with PNETs?
I still have not received the results of the genetic testing.
I am so glad you are now disease free. It gives me hope for a cure.

Hi vtn
So I didn’t have the gallium first. So when they did the first recheck in 6 months nothing showed up. The Pet picked up the one in the pancreatic tail…. But they found the second on on the head during surgery. So I had the pet in 4/2018 and surgery in 2/2019 so it could have spread or too small to pick up. Mayo assures me they have kept my slides and can test at a later date if needed, to see if I have receptors. If you have receptors, the gallium will pick up activity so that why you need to have one done ! While this cancer is treatable it is not curable and I will need regular mri’s CT yearly for the next 10 +years. The next place Nets typically migrate to, would be the liver . They have to keep a watch out for it. Neuroendocrine type cells are found through your entire body and so they have to be vigilant. I have no syndromes presently, I only have the head of my pancreas, they took the remaining tail of the pancreas, gallbladder, spleen and due to the first surgery, I only have 1/3 of my stomach. 1.5 yrs post surgery I became diabetic, presently on metformin and I have some malabsorption. I may try enzymes. I have always had constipation and that didn’t change post surgery. I also am lactose intolerant as well.
I have many medical conditions of which 3 are autoimmune diseases, so I am a slow healers and had sepsis after both surgeries and pancreatic leaks. My partial Whipple was tough, but if you are relatively healthy, you shouldn’t have those complications typically! . I hope this helps ! You will become an expert after being a part of the NET community!

You have been through so much. You must be a strong person. I really appreciate that you shared your story.
So I guess a Whipple is in my future. I already had my gallbladder removed 15 years ago so one less part to remove. This watch and wait policy scares me because I feel it lets the PNET have more time to metastasize. Do you know anyone who only had a solitary PNET that never metastasized?
I read that removal of the PNET is the only cure. I am new to this so don’t know very much. Do you know anyone who has been cured?

We aren't doctors, but generally NET is slow growing in most cases, and the key is staying one step ahead of it. Get a NET specialist with a Multi-disciplinary team, to recommend the best course of treatment. In our case, my wife was diagnosed with mass on pancreas, too many tumors on liver to count, and after 9 months of CAP/TEM, and monthly injections of Lanreotide, she was able to get surgery 3/1, and only a few molecular tumors remain in the right lobe of the liver, which we will continue the Lanreotide injections, and every 3 months, do CT and MRI, to monitor it and it should be only a maintenance item going forward. Every case is different, we have your back with any questions you may have and wish you the best in battling NET. We all got this!

Hi vtn
There are a lot of people that have had no additional growth or metastatic activity post surgery, but some do. So surveillance is key. At my 3 opinion the specialist said that “once it’s confirmed, the horse is already out of the barn.”However, it may take years to develop. I pray and am a positive person. I keep up to date on as much information I can to see what new drugs/procedures are coming out! I do this through some of the sites I mentioned. I agree with Kim 1965 that we are not doctors and a multidisciplinary team is best.
Mayo also has a NET Support Group meeting every 1st Thursday of the month and you can be placed on on email reminder list by emailing our coordinator Loriell at the below email.
Grossling.loriell@mayo.edu

Also CCF, Carcinoid Cancer Foundation has Facebook Live events ever Thursday, Luncheon with the Experts, NCAN has weekly support groups and Dr Liu has a monthly Facebook Live as well. Being your best advocate and learning as much as you can will help your confidence going forward! 🙏✝️💜

Thanks. I emailed to get put on the list.

Hi vtn. I agree with what has been previously said. You have some people in here that have been successfully living with their NETs. I just want to point out a few things. You can't cure NETs. You try to manage it the best you can. It's like the bad relative that keeps showing up at family gatherings. You just hope he or she behaves. I was diabetic when I started my cancer journey. I now I take one insulin shot day. Nothing else. The Dr. Said my diabetes was probably caused by my PNet. I was diagnosed with stage 4 pancreatic cancer with too many lesions on my liver to count on 8/22/2022. 9 months later of being on CAPTEM, I am the healthiest I have been in years. Also, don't suffer from paralysis by analysis. There is so much incorrect information on the internet. Do your homework. Prepare a list of questions. And surround yourself with the best multidisciplinary team as possible.

Hi vtn,

I did the watch and wait for a small PNET on the head of my pancreas for 6+ years. Mine was 9mm I saw three surgeons that recommended that it be watched as they all agreed where my was made the Whipple more difficult. My blood and urine tests always came back normal, mine was diagnosed when it showed up on a CT scan and MRI scan. Which were done after years of unexplained diarrhea, weight loss, nausea, fatigue etc and multiple incorrect diagnosis along the way, IBS being the first one. I had Whipple surgery, liver resection and liver ablation at 49 to remove the primary from the head of my pancreas and two from my liver. My primary never really grew in the 6+ years of watching, but my symptoms continued to get worse to the point of them affecting every minute of every day. I went into surgery with my PNET being classified as non functioning as all of my tests always came back normal even the Ga PET was normal. Both the Surgeon and Anesthesiologist said that my tumor seemed to be functioning during the surgery. I am not a doctor and all I can do share is my experience, after I recovered from surgery all of my previous symptoms were gone. For me I wish I had the Whipple surgery earlier as for me my quality of life improved after surgery. I had a modified Whipple, none of my stomach was removed. Make sure you ask as many questions and seek second options so that you have the information that will help you make the decision you are comfortable with. I was back at work 6 months after surgery, but I did have a pancreatic leak that took 4 months to heal on it's own. I think I continued to improve/heal up to a year after the surgery. For me the recovery was tougher then I was expecting but everyone is different, I think I was bit slower then some. I had to go on enzymes until my leak healed, I am more conscious of what I eat now, try to stick to low/healthy fat diet, no alcohol, less added sugar etc. as I am trying to be kind to my remaining pancreas. I don't have diabetes (yet), have had mild pancreatitis a few times since surgery, may need to go back on enzymes as test showed pancreatic deficiency, and my ablation grew back with a new or reoccurring spot (opinion differs between radiologists), even with some new problems I feel much better after surgery. My only advise is if you do ever decide to have surgery make sure that the surgeon is very experienced with doing Whipple surgeries. Wishing you the best on your journey.

I appreciate that you shared your experiences with me. I am thinking of going for a second opinion. I am so afraid that this cancer will metastasize. I feel like the longer I wait the harder the surgery will be. I want to be cured if possible.
I know that Mayo Clinic has a great reputation. Johns Hopkins, MD Anderson , too.
Where do you go to finally have your Whipple?
I am on Creon now. I think it is strange because my fecal test was “borderline”. I also take Colestid. I had my gall bladder removed about 15 years ago so the Colestid helped for awhile and then it didn’t. Now it seems to help but I also stopped drinking any alcohol. I am trying to eat healthy. My husband is a type 1 diabetic and I want to avoid that if possible.
How long ago did you have your Whipple?
I am sort of confused that your primary tumor did not grow but you developed liver lesions. How did you find out about the liver or was it there when were first diagnosed with the PNET? Why did the doctors think it was a functional PNET when they operated?
I am so new to this I don’t always understand how all of this works so I am asking stupid questions.