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

@lanamarie: You must be feeling really overwhelmed by wanting a path to resolution of your health problems. You have made a good decision to join this group, for you will learn much about Neuroendocrine Tumor cancer and the many treatment options. I’m sure many of my NET peers will respond with specifics about their NET pancreas tumors. Research the specifics of this cancer and ask questions when you need clarification. Learn all you can about this cancer and this knowledge will help your dialogue with NET cancer specialists to find the best treatment options. NET patients are unique in their symptoms, responses, and treatment - we all present with different challenges. NET Oncoligist specializing in your cancer is needed to evaluate best road forward and might suggest specific tests, I.e. Dotatate Gallium PET, Evoist Contrast MRI, 24 hr urine, etc., to evaluate your cancer. I would keep home medical file of all your test reports with scan discs, lab results, procedure reports, etc; this is needed for 2nd opinions, etc.
From your endoscopic biopsy the Pathologist probably referred to “stage, grade, Ki67, tumor size” - this info is important to note, as it will reveal specifics of your NET tumors and questioned at stages of your treatment.
I sympathize with the “watch & wait” suggestion from your doc. It would be hard to not wonder if something should be done sooner; however, it might be your best tactic. I would suggest asking for 2nd or 3rd opinion from NET specialists; this usually requires travel to a cancer center that has Neuroendocrine Oncologist, NET informed Radiologists and the best scanning techniques and treatments available. I think we NET patients need to be proactive, yet realistic in choosing our cancer team.
You will hopefully feel better once you obtain specialist medical care. You can do this! Best to you..

Hello @lanamarie,

I would like to welcome you to the NETs support group on Mayo Connect. I see that @dbamos1945 has already provided you with some great information regarding NETs. Her comment about learning as much as you about NETs is a great suggestion. Reading the posts of the other members in this group is also a way to learn from the personal experiences of other NET patients.

I would encourage you to seek out a consultation with a NET specialist. I am glad to see that you will be going to Mayo in July for another EUS. That sounds like a good plan. Mayo has NET specialists at all of their three locations, and you will undoubtedly get some good direction from them.

On Connect, there are other discussion groups on the topic of pNETs. I would encourage you to read these posts as well. Here are links to those discussions,
https://connect.mayoclinic.org/discussion/pannet-and-cga-results/
and
https://connect.mayoclinic.org/discussion/pancreatic-neuroendocrine-insulinoma/
Have you had any problems with your blood sugar?

My A1C and glucose numbers have been elevated but not alarmingly so. Thank you for replying. I'm not fond of this guessing game that never seems to end. The constant fatigue and lack of stamina is overwhelming at times. There is so much I would like to do, but just a short period of activity has me in a cold sweat and light headed. My life has radically changed since my multiple embolisms in October. I'll be 73 in a couple weeks, so I know my age isn't helping all that much either. One foot in front of the other and hopefully soon I will be able to do that with a bit of enthusiasm!

Hello Lanamarie. I am not far from you in New London, MN.
I was diagnosed with duodenal neuroendocrine cancer in December 2023. It’s interesting that I also had a diagnosis of SIBO when I was seen for chronic diarrhea over 3 years before my diagnosis. My cancer was also found during endoscopy. Unfortunately I had probably had it for 5+ years and it has metastasized to liver and spine. I have been through the whole emotional phase of “why not surgery” “why not treat the bone cancer, etc.” I see Dr. Hobday at Mayo. And Dr. Arjun Gupta at MHealth Fairview. I did do 7 rounds of CAP/TEM Jan-July 2024. I have had no new cancer growth for a year March 2024- March 2025. And I feel great! I do have Octreotide injections every 28 days. Before my cancer was found, my d-dimmer test was extremely high which can indicate blood clots. I learned that this blood test can be elevated with malignancies. Please reach out to me if you wish.

That is interesting that you also were diagnosed with SIBO. I was on three different antibiotics to try relieve some of the symptoms, but none worked. When they did the endoscopy at that time, they found a fluid filled mass on my pancreas, but determined it to be non-cancerous. The size of that mass remains the same as four years ago. The somewhat troublesome thought in my mind was my 19-9 antigen test for pancreatic cancer was quite high at that time, but it seems when the SIBO test came back positive, everything focused on that and nothing more.

In a sense, I am probably fortunate to have the multiple pulmonary embolisms and multiple blood clots in my legs and lungs. My d-dimer was very high when I went to the ER at 3:00 a.m., unable to take a deep breath and in horrendous pain. My hematologist made the initial contact with Mayo for further testing which lead to the neuroendocrine pancreatic tumor and the surprise to all the doctors that it was cancerous. The fortunate part is that they found it in the early stages and believe it to be slow-growing. I am so sorry that your cancer had spread when they finally diagnosed you. It has to be so frustrating, knowing you weren't feeling well but only coming up with SIBO. Thankfully the treatments have helped you. You must be a very strong person to go through all you have. I appreciate you reaching out. It can be very lonely at times!

Thank you for your informative and thoughtful reply. I did check for a NET specialist at Mayo in Rochester and one is there. I'm a bit unsure how to go about getting an appointment with him without Dr. Majumder my pancreatic doctor, making the recommendation. I don't want to go behind anyone's back or risk my standing with Dr. Majumder. I am planning to consult with my local hematologist for answers to some of my questions and his thoughts on trying to add a NET doctor to my team.

I so appreciate your help!

@lanamarie: I’m glad you are being proactive in your cancer healthcare. I would first check with your medical insurance company for their 2nd opinion protocol. The reason a NET specialist is critical is because our NET cancers react differently than Pancreatic Cancer -your diagnosis is NET in Pancreas as I understand. You need the most NET experienced drs to carefully evaluate your situation to be able to offer best treatment for your NET tumors. Your prognosis is most important!
My experience is that Medical Oncologists with minimal exposure to how NET tumors are treated will not blink at your request when you ask for referral of 2nd Opinion for NET specific info from NET oncology specialist. You need doctors who can advise you how to best proceed with treatment. They have info on most effective drugs and procedures. This also applies to surgeons as well -need to be experts in NET surgery. You have identified Mayo Clinic in Rochester - there may be other Cancer Centers to choose from as well.
In my case I saw a NET specialist at City of Hope (2+ hr drive away from home); now that my treatment is finished he still follows my case, but I see my local oncologist monthly.
Let me know how it goes. You are doing great researching specialists!

Thank you for your encouragement. It certainly helps to have people who are familiar with pNET and can offer expertise on how best to move forward. I've been trying not to be too concerned but sometimes my mind doesn't cooperate with what I would like it to do. (You'd think I'd have better control...but nope! It's pretty good when you surprise yourself. :-)) Due to the posts I have been reading here, I am even more convinced that I have to be my own advocate. I needed that bit of a push to encourage me to keep on top of things. Thank you!

I know it gets concerning sometimes but it is what it is. I try everyday to fine something to be HAPPY about like the air I breathe, or the way the grass feel to my bare feet, like listening to the birds curping in the early morning time. Just something because cancer is something else!!!

Hi @lanamarie,

I see that you are uncertain about getting a consultation at Mayo Clinic for a second opinion. In order to put your mind at ease, here is a link with appointment information, http://mayocl.in/1mtmR63. If you call, you can get information about insurance coverage, and whether or not you need a referral, etc.

I can understand your sensitivity when you say, " I don't want to go behind anyone's back or risk my standing with Dr. Majumder." However. please know that second opinions are well received by doctors. It is part of the process whenever you are dealing with a serious medical condition.

I look forward to hearing from you again. Will you continue to post and let me know how you are doing?