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

I was diagnosed months ago with well differentiated tumour in the pancreas. But doctors are not moving ahead on surgery. They are just taking a watch and wait approach while I am getting more anxious. I’m worried that I will be getting more sick and eventually no treatment will help.

Hello @taf and welcome to the NETs support group on Mayo Connect. I can understand your concern about the watch and wait approach. It does create a lot of anxiety.

There are many members on Connect who also have NETs on the pancreas. Here is a link to many of their posts, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=NET+on+pancreas#discussion-listview. I would encourage you to read these posts and see how others are responding to treatments. Feel free to post to any member by clicking on "Reply" or "Comment" below their post.

How are you feeling? Is your blood sugar affected by this tumor on your pancreas?

Hello, I'm very sorry for what you're going through. My wife have been through it. A grade 3 well-differentiated neuroendocrine tumor. No metastases or infiltrated lymph nodes. My wife's tumor was functional; it produced ACTH, which produced excess cortisol, causing Cushing's syndrome. She underwent tumor enucleation on March 4, 2024. As of today, she is disease-free. Yesterday, she had follow-up CT scans, and the reports all came back normal. I'm not a doctor, but I encourage you to discuss all your doubts with your medical team. Ask if surgery is an option for your case. What type of tumor you have. What is causing that tumor? Remember that the golden rule for a cure is surgery when possible. I encourage you to ask your doctor all the questions you think are necessary. I wish you the best of luck on this journey. I hope you understand my English. I wrote it using Google Translate. I write in Spanish.

Hello Everyone Has anybody ever had a Small bowel resection and whats the recovery like.

Hello @cu2,

I have had two resections of the duodenal bulb. The carcinoids were small. Do you know the size of the lesions that are going to be removed by resection?

My recovery was uneventful. It took a while before I begin eating a regular diet. For several days after surgery, I had an NG tube and did not eat until that was removed.

Is small bowel resection surgery already scheduled for you?

Hi @taf, I'd like to add my welcome. I can understand your concern about the watch and wait approach. It's unnerving because it feels like nothing is being done. Sometimes, with slow growing tumors, waiting is the right approach. I prefer to call it active surveillance which more closely aligns with the careful monitoring your team will be doing.

To help you connect with others who have taken the watch and wait approach with NETs in the head of the pancreas, I moved your question to this related discussion:

- Just diagnosed with PNET: Any thoughts on watch & wait approach? https://connect.mayoclinic.org/discussion/just-diagnosed-with-pnet/

I did this so you can click the link the read previous posts and connect with members like @vtn @tomrennie @smt @elm60 @kim1965 @pavlina60

You might also be interested in this discussion that @pamsbass started:
- Need more information on NET in head of pancreas https://connect.mayoclinic.org/discussion/need-more-information-on-net-in-head-of-pancreas/

@taf, have you told your oncologist how you feel about watching and waiting? Were they able to put your mind at ease?

Hi @taf
I am one of the folk’s Colleen tagged.
There are several thoughts here. If your tumor is under 1 to 2 CM, surgery is tricky. My surgeon was going to remove my Pnet in the neck of the pancreas (Ki -67 < 3% non functional stage 1) and the size was 6x8 mm. He went in and did not see the tumor and did a partial pancreatectomy. I was prepped for a Whipple and had a lot of infections and sepsis from the surgery. It took 5 months to recover. 8 months latter a PET scan showed it was still in my pancreas and growing I decided to wait until open enrollment for better insurance, and I found a NET specialist Dr Jason Star and wonderful surgeon Dr John Stauffer at Mayo Clinic Jacksonville FL.
I had a modified Whipple leaving the head and taking the remaining neck and tail of the pancreas , spleen, gallbladder and 2/3 of my stomach.
The surgeon found the existing tumor and an additional tumor he removed along with 35 lymph nodes. Again, I had infections and ended up at a long term care facility on antibiotics and TPN feeding to aloe my gastrointestinal and stomach to rest for over 2 months.
So far, thank you Lord! I am 6 yrs post surgery and there is no evidence of disease and on no medication for this.
I do have several residual diseases that I added post surgeries and have 3 autoimmune conditions as well which could account for not healing quickly. That’s why they may wait as well. I was 57 at the first surgery and 59 at the second. Also I had 3 opinions and make sure you see a Net Specialist!!! One last thing, depending on the location, some surgeons may opt to do an enunciation procedure instead of the invasive Whipple. Do your research and ask questions, especially how many procedures they have preformed and the success rate. Wishing you well!

"Cutting it out is the only cure!!!!" I have been belittled with that statement many times. I will share my thoughts. I am alive. I am thriving. Part of that thriving is an understanding that chemo sux. It is ok. It could be worse.

When I was first diagnosed with my metastatic PNETs, I met about 6 folks on here with a very similar diagnosis. Most had the cut it out is the only cure mentality. Unfortunately, several are either gone or struggling with the side effects of surgery that resulted in other surgeries. I believe that they have it far worse than I do. Learning from other personal surgeries in the past, the results are not a certainty. EM's experience gives some glimpses of that. Complications happen during the procedure. Recovery has its own set of complications. I also don't believe there is a cure for NETs. Through my journey, my NETs pop up all over on scans. But, most tend to go away. Those that don't, my care team at Mayo Arizona and I know exactly where they are. After 1 year of CAPTEM and now 1.5 years of just Capecitabine, I still get a slight decrease in metastasis every time. I will quote my main doc at Mayo. "If it ain't broke, don't fix it." I won't do surgery unless I absolutely have to. With the introduction of AI into clinical studies, pretrial research that took years will be compressed to months. The data analysis of ongoing and new trials will significantly reduce. Also, the cross referencing of drug successes across multiple cancers will be a lot easier to do. For example, I am on capecitabine now. Its original FDA approval was for colorectal cancer in 2001. It has also been effective for treating breast cancer. During a dermatologist appointment, I was asked why did all of my squamous cell spots on his watch list disappear. I learned that he prescribes capecitabine for challenging squamous cell skin care patients. He had no idea that capecitabine was being used for PNETs. He really didn't know what PNETs were. He is a great doctor that I have been going to for 25 years. Oh by the way, he is at Mayo.

I believe in riding the capecitabine train as long as I can. If something better comes along, I will consider that route. I don't feel anything else is better currently. We are all different. My main suggestions are do your homework. Listen to your doctors. But ultimately, you make the decisions. You will be the one dealing with the consequences.

I am one of Colleen's tagged names. We all been where you are, I can only imagine how you feel. We all thought it was over after hearing about we had cancer, not knowing anything about what the heck is NET. Fortunately, we had a oncologist, that quickly explained to hold the horses on thinking your dieing tomorrow. He quickly taught us about NET, about there are many different ways it is sneaky in the body, growing so slow, sometimes for so long before anyone catches it. Then the battle starts, our oncologist had only seen 2 cases in 40 years of pracitice, and knew he had to get us the best in our area. He referred us to multi-discipline team, including a NET Specialist that guided us the past two years, and in my opinion saved her life. Although, different than your case, she had a tumor on the tail of the pancreas, which spread to the liver. We couldn't operate on it at first, the tumors in both spots where too big. So 9 months on CAP/TEM fixed that and reduced it by 70%, then surgery was allowed, that eventually was followed by PRRT, which killed more it, to a point that we were given a choice by our team, which we got 2 other opinions to possibly get a liver transplant, since after the 1st surgery the only NET that was in her body(that they knew of) was on the liver. It was a very tough decision, and after much thought, we chose to do it. It has been very difficult since the surgery in January 2025. After a total of 3 surgeries and 4 procedures, she is tracking better, with some challenges to overcome still, but the moral of all this, that applies to your story, is to make sure you have a team, that includes a NET Specialist, and follow their advice in your case, then it will be your decision to go forward or possibly get a 2nd opinion. You see we can't tell you what to do, we can tell you what we did, but every case is different, and you have to get all the advice you can get from your team, and go with your gut. We all got you, you got this! Let us know how we can help.

I'm not sure if this is where I should pose my question, but will give it a try. I was diagnosed with pancreatic neuroendocrine cancer on December 31, 2024. The tumor was found during endoscopic ultrasound test that was done. Prior to this, on October 4, 2024, I was hospitalized with bilateral pulmonary embolisms, a pulmonary infarction in my right lung, and multiple blood clots in my legs and lungs. One in my left leg is a DVT. I am on warfarin daily with the dosage changing as my body adjusts. Because of the number of clots, my hematologist suggested I go to Mayo in Rochester for further testing to try to find what might be causing my blood to clot. (I had never had any problems with this prior to the October 5 episode.) I have been a patient at Mayo for several years because of stomach problems, bloating, and pain. I was diagnosed with SIBO at the time. My pancreas was checked during that same visit, four years ago, because my 19-9 level was elevated and I have a brother who passed away from pancreatic cancer which put me at a greater risk for pancreatic cancer. They found a fluid-filled mass on my pancreas that they determined was not cancer. I am seeing Dr. Sawatsky as my general physician and Dr. Mejumder (unsure of the spelling) as my pancreatic specialist. They are also in contact with my hematologist, Dr. Rooney here in Fergus Falls. They were all quite surprised when the neuroendocrine tumor came back positive for cancer. They are taking the "wait and watch" approach because they feel the tumor is slow growing. I'll have another EUS in July at Mayo and have had my 19-9 tested twice since December. (Both times it was elevated, not alarming so, but still beyond the target high of 35.) I feel like a walking time bomb between the embolisms, blood clots, and now the cancer. I'm not particularly fond of basically, "doing nothing", and I am worried that even though they believe the tumor to be slow-growing that it might change and invade other organs. The tumor is on the tail of my pancreas and is small. Their reason for waiting is the invasiveness and difficulty of reaching the tumor. The doctors also say I would have immediate pancreatitis and that is very painful. I sure would appreciate any thoughts or experiences you might have encountered with a similar problem. I just joined the group tonight (it is now 3:25 a.m.). Sleep is not one of my attributes! 🙂 Thank you for taking the time to read through all this!