Diagnosed with Stage 4 pNET: What should I know?

A couple of immediate suggestions, as we have all fought this battle for NET's. There is a different path for each case, but most of the successes have occurred when a NET Specialist Multi-Disciplanary Team is involved in your case. My wife's case involved Stage 4 also, with mass on pancreas, and also too numerous tumors on liver to count. Also 9 months of CAP/TEM, Lanreotide injections, and 80 % reduction in tumors in both locations, she was able to have surgery 3/1, and for now she is in good shape to try to keep this as only a mtn. function going forward. So the short story is NET can be beaten or at least managed, but starting with a NET Specialist is key to everything in his recovery. We wish you the best and let us know if we can help in any way.

Thank you so much for your input. We are working with a team at Cancer Specialists of N.E. Florida. My biggest concern is that they did NOT catch it when the tumor was confined to his pancreas. He had the major part of his pancreas removed with the exception of the head AND his spleen in 2014. Unfortunately, they did not test for PNET at that time. It was ruled a benign tumor at that time. He developed a tumor in his transverse colon which was discovered in June 2022 after I urged him to get a colonoscopy due to rapid weight loss. I had my suspicions at that time which were confirmed during a surgical procedure to remove the mass. A very astute and observant surgeon noticed spots on his abdominal wall and a funny shape to the outside of his liver that he was afraid to biopsy due to the length of time that the surgery had already taken and my husbands advanced age. He was afraid that it might cause bleeding that they couldnt control. Fast forward to present day and he now has been diagnosed with severe calcification in the arteries of his heart in 3 spots on top of the cancer. I am afraid that he wont try any other treatments and avenues, He is constantly tired and his sugar levels are all over the map. Not sure where to go from here except prayer.

How are you and your husband doing, @talkativeinfl?

My husband has net no organs involved. Seven tumors, bones and lymph nodes involved. He is in pain all the time, very tired, sleeps a lot. He gets sandostatin shot every 28 days. Does not want chemo, he is 76. It's the uncertainty and not knowing what to do.

Hello @talkativeinfl and welcome to the NET discussion group on Mayo Connect. I hope that you are getting some answers to regarding your husband's treatment plan. I can understand that this is a difficult place for you both.

On Connect, we have a discussion group specifically for caregivers. I would encourage you to look at that support group and read the posts from other caregivers and feel free to post your own concerns. As you still work full-time, it might be helpful for you to share. Here is the link to the Caregivers' Support Group,
https://connect.mayoclinic.org/group/caregivers/
@IndianaScott is a mentor of this group and was a caregiver for this wife. As you read his posts, I'm sure you will be able to understand the difficulties that caregivers face as they travel this unchartered territory.
What are your most pressing concerns right now, @talkativeinfl?

Hello @norkatsc and welcome to the NET Support Group on Mayo Connect. I'm so sorry to hear of the pain that your husband is experiencing.

I can appreciate it when you say, "It's the uncertainty and not knowing what to do." Most of us with NETs have felt this same uncertainty and confusion. As NETs is a rare disorder it is often difficult to find support and answers.

I would first encourage you to seek out a NET a specialist for a consultation. There are many NET specialists at the three Mayo locations. If you like to request a consultation (either in person or virtual) here is a link to help secure an appointment
http://mayocl.in/1mtmR63
If a Mayo appointment is not available for you, here is a list of NET specialists throughout the country,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
What is your husband's medical team currently doing to address his pain?

Currently taking hydromorphone 2mg. I think he probably should take more but he is hesitant. Currently 2 a day. The strange thing is they say he is grade 4, no organs involved but I see on here everyone sees to have at least one organ involved. Dilemma is he will not do chemo other than the sandostatin shot. Thanks for your thoughts.

@norkatsc
In looking for an organ that might have NETs, has anyone done a 68 Gallium PET? This type of scan is usually only available at large medical centers. Here is information about this specific scan,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic
Have you consulted a pain specialist or perhaps looked into Palliative Care:
--Palliative Care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
Palliative Care is different from hospice care. It helps patients deal with the symptoms of chronic health issues. Palliative Care might be able to offer more assistance with your husband's pain since he is not willing to go through any chemo treatments.

Has that been offered as an option for your husband? If not, you might ask for a referral to Palliative Care.

I feel like he has just given up. He has constant diareaha that only slows down with 2 prescription antidiareahal meds and is weak and tired often. He seems to be wanting to get his affairs in order and tells me that he wont be here for much longer. He says he can feel it. I just feel hopeless and cant help but think if ONLY they had discovered this cancer in 2014 it would have been a game changer. However because it IS so rare, apparently they did not test for it. By the time he lost a lot of weight for no reason and I browbeat him to go to the GI doc they found a tumor in his colon but that was not cancer. However when the surgeon noticed some abnormal spots on his abdominal wall and that his liver had an odd look to it, he did a biopsy and ran ALL the cancer tests. HE immediately sent us to the oncologist. I assume IF it HAD been found in 2014 they would have done the same. Im just wondering what to expect with enstage since its totally different then any of the cancers family members have passed from. I notice he has become altered at times even argumentative but then he is fine again. His appetite is good as long as I am here but I can not be sure he is eating when I am at work. I have been told to call hospice and get them in place now but Im not sure that is the right move at this point since he IS still being treated. He is now worried about affording a final resting place and being "ready" so I wont have to worry. Too late. I know I shouldnt pre-grieve as someone put it but I see the deteriation from a yr ago from the robust 258lb happy man I was married to to a man who now weighs 160 and is often tired and quiet or dozing in his chair. It breaks my heart for what was and what could have been. I want to scream, I want to make heads roll for the injustice of not finding it sooner but MORE than anything I want to give him all I can to put him at peace and let him know I will be ok. He wanted to rent a convertable for a few days since I made a point to take time off to spend with him next month but after pricing it, its simply not in my budget. As you know, this cancer treatment can be extremely costly depending on insurance and I had insurance that my copay was 1800 a month until I switched. Now there is some help with lower costs but it definately hit my credit cards because they had to have so much up front. Couple with that that I was without any pay for 2 months before my boss decided he needed me to work as a supervisor while I continue to fight Workers comp for a back injury before I can be treated. I dont let my husband know just how bad my back is because he will insist on my going out of pocket. I dont want to worry him about me or our situation so I quietly carry the burden. I honestly feel like a island unto myself. My friends dont stay in contact now that he is sick and the support/help group I joined only serves the jacksonville area not St. Augustine area, so the things that made him happy like gift cards, honey baked hams and other sponsor donated things I am told I am not eligible for so I no longer get the newsletter for whats available. Its like I dont belong anywhere. Those little things helped as a pick me up for BOTH of us. Sorry to vent but I guess I just needed an outlet and some answers.

Honestly,
Im not sure. He feels like he wont be here next yr or even in a few months. I have been thru so many things myself that I am strong and never feared anything until now. I know he was more than likely going to pass before me due to the large age difference but THIS way is not what I barganed for. I have been married to him for all of my adult life having married him at 16 and we have a 32 yrs old son and have been married 37 yrs "working on 38" as he says.

I dont know how to be strong enough for both of us so I am strong in front of him and everyone else but break down in my own space.

He is now worried because we dont have burial plots which I had urged for YEARS and now with limited income it will be difficult at best.

He does not want to go into hospice for end of life and has chosen to have them come here. I just dont know when the right time to call them in is. I know its not just for the very end but he has to be on board and understand what they are here for.

I have just finally had the deck and wheelchair ramp installed and stained in preparation for his continued weakness and make it easier for him to get into our home.

I take solace in the fact that he believes in God. He was raised Catholic and does not want to be cremated but actually talked about it to "give me more money" because I have a small life insurance policy on him to cover final expenses. I wouldnt hear of it because I KNEW he didnt want it and told him NO because we planned to be buried side by side always.

He is truly the only man I have ever loved and I knew he was the one at a very early age. Now just turning 54 I have no intention of trying to move forward with someone new.

I know it sounds crazy but I just cant imagine anyone BUT him sharing my life.