1. < Neuroendocrine Tumors (NETs)

Diagnosed with Stage 4 pNET: What should I know?

Posted by talkativeinfl @talkativeinfl, May 7, 2023

It turns out that my husband has actually had this since at least 2014 when he had most of his pancreas removed as well as his spleen, due to a tumor. Developed another tumor in his transverse colon which was found in June after rapid weight loss prompted me to push him for a colonoscopy. When the tumor was removed they noticed abnormal spots on his abdominal wall. Fast forward to current day, he has had 2 different scans and it was determined that is has spread to his liver with "too numerous to count" tumors. So he has already had this for almost 9 yrs. He just turned 76 and I don't know what to expect or when. I noticed that he has had frequent memory issues where he was sharp as a tack just 6 or 7 months ago. Now I found out he has "severe Calcification" in 3 places in his heart. He is at a lets see which take me first place, how do I even begin to deal with that. Meanwhile he is worried about me not being able to live without his SS even though I am 22 yrs younger and am still fully employed. Any tips for this caregiver and her husband/patient?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

talkativeinfl | @talkativeinfl | Jun 5, 2023
In reply to @norkatsc "My husband has net no organs involved. Seven tumors, bones and lymph nodes involved. He is..." + (show)
@norkatsc

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.

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my husband is on the same treatment and they were going to give him less sandostatin and add another infusion that COULD compromise his bone marrow and put him into lukehmia if his red blood cell count get too low. Its already too low so he didnt wanna gamble. He is also 76 as of this past April. I am fortunate that the only pain he has complained about was shoulder pain but he is tired often. He no longer has the energy to do the things he took pleasure in and when he DOES push himself he pays for it for days.

My heart breaks for you and your husband as we seem to be on a similar path. God bless you and your husband. I pray every night that they find a cure for PNet before its too late but hopefully it will be caught sooner with enough awareness.

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1 reply
norkatsc | @norkatsc | Jun 5, 2023
In reply to @talkativeinfl "my husband is on the same treatment and they were going to give him less sandostatin..." + (show)
@talkativeinfl

my husband is on the same treatment and they were going to give him less sandostatin and add another infusion that COULD compromise his bone marrow and put him into lukehmia if his red blood cell count get too low. Its already too low so he didnt wanna gamble. He is also 76 as of this past April. I am fortunate that the only pain he has complained about was shoulder pain but he is tired often. He no longer has the energy to do the things he took pleasure in and when he DOES push himself he pays for it for days.

My heart breaks for you and your husband as we seem to be on a similar path. God bless you and your husband. I pray every night that they find a cure for PNet before its too late but hopefully it will be caught sooner with enough awareness.

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This all sounds so familiar. His major pain is also in left shoulder. I feel so bad as he also tries to do things and is exhausted and achy for days. We go next week again. The sandostatin helps with the nausea. I know there are so many worse off, it's just I worry about him. Cat scan tomorrow to see how things are since pet scan three months ago. Hope things go well for you and your husband. Let me know if they lower shit and hiw that works.

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talkativeinfl | @talkativeinfl | Jun 5, 2023
In reply to @norkatsc "This all sounds so familiar. His major pain is also in left shoulder. I feel so..." + (show)
@norkatsc

This all sounds so familiar. His major pain is also in left shoulder. I feel so bad as he also tries to do things and is exhausted and achy for days. We go next week again. The sandostatin helps with the nausea. I know there are so many worse off, it's just I worry about him. Cat scan tomorrow to see how things are since pet scan three months ago. Hope things go well for you and your husband. Let me know if they lower shit and hiw that works.

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Hubby and I talked about the new treatment and decided against it because of the possible side effects when the oncologists told us it could cause leukemia we chose to stay the course because he is already severely anemic and this could drop his red blood count lower and if he developed leukemia it was game over quickly. We decided to enjoy what time we had left together without him taking more chances for "rare" side effects considering this cancer alone is rare. I believe my health issues factored into it as I too have had rare issues crop up on multiple occasions. we often joke about of all the rare things we have done, hitting the powerball is not one of them sadly.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 6, 2023
In reply to @talkativeinfl "I feel like he has just given up. He has constant diareaha that only slows down..." + (show)
@talkativeinfl

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.

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You have been going through a lot of issues lately and it would be good for you to have some support. Do you have a church family that might be able to offer you some support? If that is not available to you, consider contacting the hospital's social worker where your husband was treated. Social workers are great resources for helping people find support.

Also, on Connect, we do have a Caregiver's Support Group. Here is the link,
https://connect.mayoclinic.org/group/caregivers/
In this group you will find many people like yourself you are caring for spouses who are quite ill. They face many of the same concerns as you.

Will you consider some of these resources?

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pippa05 | @pippa05 | Jun 6, 2023
In reply to @talkativeinfl "Honestly, Im not sure. He feels like he wont be here next yr or even in..." + (show)
@talkativeinfl

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.

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Catholics are allowed to be cremated, his ashes can be buried in an urn, there re many less expensive options. As far as finances, are you working with a social worker thru your oncologist. I have been told that the Cancer Society has many resources available to help you. There is also financial help from pharmaceutical companies to pay for their drugs.
Palliative Care or Hospice would be worth looking into, especially since you still work and your husband is alone. I was upset that some friends have distanced themselves once I announced my cancer diagnosis, I never asked for any help from anyone. Check into your Senior Citizens organization in your town for any services they may provide such as Meals on Wheels, there are many volunteer services that could may help you. Local churches may have volunteer services. By networking with different organizations, someone may be able to steer you in the right direction. God bless.

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phyllisden | @phyllisden | Jun 6, 2023
In reply to @talkativeinfl "Honestly, Im not sure. He feels like he wont be here next yr or even in..." + (show)
@talkativeinfl

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.

Jump to this post

Talkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your struggles with it. While I have not been in your situation I am a 5 year survivor of NETS (started in the small intestine but wasn’t discovered until 2018 when I had a blockage and I’d been sick since 2007). And I was a therapist for 34 years. This situation you’re in is very challenging. Getting some support for you is very important. Colleen is so right is suggesting you connect with the Caregiver link on Mayo Connect. Also, cancer centers and hospitals usually have in-person support groups. They also have patient navigators and/or medical social workers there to help not only the patient but the family too. And where is your son in all this? Can he be a support for you and your husband? You said your husband is Catholic so is there a priest he would feel comfortable talking to?
I would encourage you to consider finding a grief counselor for yourself. I have a close friend (herself a therapist) who sees a grief counselor twice a month, not because her husband has passed away but because he has dementia and there are multiple challenges dealing with that.
Lastly, while every case is different, these tumors are normally slow growing and while still considered “rare”, they are becoming more common, possibly due to more advanced ways of identifying them which leads to more research on ways to treat them. When I was finally diagnosed in March 2018, I was told it was Stage 4 as I have several small tumors scattered throughout my body (a larger one in my stomach) and here I am over 5 years later, turning 74 soon, and pretty much living a normal life. I have had Lutathera treatment and been on Octreotide shots every 28 days, but so far, so good.
I’m sure you can find help at Mayo in Jacksonville and you’re not far away (I spent my teenage years in Jacksonville). Please take care of yourself. I believe there are answers out there to your questions and concerns. Please check in when you can.

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1 reply
lastround | @lastround | Jun 7, 2023

Sorry to read about your circumstance. My NET is a Insulinoma, pancreas to liver, also too many to remove. Diagnosed last spring and was told by two different hospitals i would be gone by Thanksgiving last year. Third hospital, Dana Farber in Boston started me on chemo immediately for 6 months and reduced the liver tumors from 10 centimeters to 4cm on average.
I’m still here and feeling pretty good.
Your husband has to, HAS TO see an NET doctor that specializes in NET. It almost did me in that the first 2 hospitals were treating me like I had a “regular” pancreatic cancer.
His lack of energy is probably the liver tumors, i had the same problem.
Ask about chemo, it’s not fun but it saved me so far.
Best of luck to you both

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kim1965 | @kim1965 | Jun 8, 2023

I’d like support last round suggestions, as my wife also had too many tumors to count on liver, mass on pancreas, surgery wasn’t a option. After 9 months of chemo (pills), Lanreotide injections (still doing), she had 80% reduction in tumors which allowed for surgery and hopefully just a mtn. Issue going forward. Never give up hope, your husband can do this, we got you!

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humble57 | @humble57 | Jun 8, 2023
In reply to @kim1965 "A couple of immediate suggestions, as we have all fought this battle for NET's. There is..." + (show)
@kim1965

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.

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I'm on CAP/TEM since March 2023. I'm experiencing the hand/foot side effects. Did she experience this? What is doing for pain & to rest because I can't sleep, any suggestions

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1 reply
kim1965 | @kim1965 | Jun 8, 2023
In reply to @humble57 "I'm on CAP/TEM since March 2023. I'm experiencing the hand/foot side effects. Did she experience this?..." + (show)
@humble57

I'm on CAP/TEM since March 2023. I'm experiencing the hand/foot side effects. Did she experience this? What is doing for pain & to rest because I can't sleep, any suggestions

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Have you addressed this with your oncologist/net specialists? When Kim had issues like sores in her mouth from Chemo, our cancer care team was familiar with that and gave her a script that cleared it back up. Ask your team for what you need, not sleeping is not an option. Please let us know how we can help further.

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