Prognosis for Metastasized NET

Welcome, @sandy23. The unknowns of cancer are really hard to accept. Treatment decision making and weighing the unexact science of prognosis stats to the individual is almost impossible. If you would like to seek a second opinion, you might wish to contact Mayo Clinic. See info here: http://mayocl.in/1mtmR63

Sandy, it sounds like you may be willing to accept your husband's wish to not pursue further treatment, but that you want a better undertanding of what to expect so that you can prepare. Your research will serve you well, but it may not paint an exact picture of your husband's journey and future.

If you don't know about palliative care, I might suggest reviewing this discussion:
- Palliative Care: What is it? How do I get it? https://connect.mayoclinic.org/discussion/palliative-care-1/

Has palliative care been offered to you and your husband?

Hi Collins, thank you for the response. No, the Dr has not offered palliative care yet. I don't think my husband would even be open to it. Would it even be useful at this point? Will you tell me if my research is correct? Is the cancer in a faster stage of growth at this point? I have been a caregiver to many close family members until they passed and bc of that I'm preparing myself but I also don't want to dwell on the situation. I just don't want to be blindsided.

Hi Collins, thank you for the response. No, the Dr has not offered palliative care yet. I don't think my husband would even be open to it. Would it even be useful at this point? Will you tell me if my research is correct? Is the cancer in a faster stage of growth at this point? I have been a caregiver to many close family members until they passed and bc of that I'm preparing myself but I also don't want to dwell on the situation. I just don't want to be blindsided.

I understand that metastasis means it's spread. What bothers me is his initial oncologist told him "this is a very slow growing cancer. You'll die WITH cancer not FROM it". Basically telling him you'll die an old man with cancer. But with his last Pet showing the tumors are growing and it has spread to the other lobe, this seems to be progressing more quickly. The 3 prior scans seemed to be unchanged from each other. That's what we were told, however, the initial Pet showed 2 tumors in the liver and at some point there became 3. We only found that out when he was in the hospital in April with what we thought was another blockage and the surgeon was called in and mentioned it.. That's why I was asking if we are moving from a slow growing stage to a more aggressive stage. Also, I might add list night we talked in depth about his cancer bc today we are going to see his surgeon for a follow up visit. Oddly enough he happened to be the surgeon on call at the time of his initial blockage and removed the tumor at that time. I encouraged him to let's think of questions to ask him (we were lucky that the "on call" dr was an Oncologist AND he specializes in NETS). He was not sure what to ask so after a long discussion he finally realized he has advanced stage cancer. He admitted he was in denial. He then reviewed all of his scans, comparing sizes of the tumors, allowing me to read to him the info I had researched. I believe this dr will help guide him/us with a better plan WITH explanations to help us understand if he is terminal or if we are looking at many, many years together. And most importantly recommend a different oncologist! My take on his treatment is his shot is to keep the carcinoid symtoms away. To me it's like covering it up to ignore it. Now the chemo pill has been suggested.. . Why now? Why not initially? Maybe it would've killed the some of the cancer cells and kept it from growing. But regardless of whether he takes the chemo pill, has debulking surgery in his liver or sticks with just the sandostatin shot all three treatments are to keep him from having "carcinoid symtoms" that could lead to carcinoid crisis. None of the treatments are for curing the disease or from keeping it from spreading. They are primarily to hopefully have a better quality of life and hopefully live a little longer if he has the surgery and the chemo pill. Is that correct?

Hello @sandy23

I'm just now catching up on your posts that started on October 7. I can certainly hear the concern in your posts, especially not wanting to be "blindsided" by the unknowns of cancer. That is so common for those of us who deal with any type of cancer and especially NETs.

I've had three surgeries for NETs in the upper digestive tract (in 2003, 2005 and then again in 2016). Despite the three surgeries there is no current evidence of metastasis even though I do have pancreatic cysts and have in the past had lesions on the liver which all have remained unchanged.

As @colleenyoung, mentioned Palliative Care might be very helpful for your husband now. They would be able to offer him more help with his symptoms. As Colleen mentioned, Palliative Care is not hospice care. It does not necessarily reflect end-of-life care. Here is some information from Mayo Clinic's website regarding this type of care:
--Palliative Care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
I agree with your desire to find a NETs specialist. Mayo Clinic has some great NETs specialists so you might look there for a second opinion as @colleenyoung suggested. I would also encourage you to look at the Carcinoid Cancer Foundation (CCF) website. They also provide a lot of helpful information including NET specialists throughout the world. Here is the link to the CCF website
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
I'm looking forward to hearing from you after your meeting with your husband's doctor. Will you post an update?

Hi Teresa, Thank you for sharing your story and suggestions. I'm assuming your surgeries were from blockages in the intestines, or no?
Our appt with the surgeon went very well. He's the type of Dr that we like. We said we came armed with questions and he said... great, I'm ready, bring it on. So first off, my husband had admitted he had been in denial and we needed to establish his staging from the Dr. He NEEDED to hear it from him. They don't always offer staging, so I asked. Is he stage 4 (which i knew but my husband didn't believe me). YES. Is this curable.... NO but it's treatable. We discussed the chemo pill his oncologist had sad was the next line of treatment bc the liver tumors are growing and the disease is spreading. The surgeon didn't recommend the pill for many reasons mainly, that being overall side affects, restrictions while on it and the bottom line was it wasn't really going to outweigh the minor plusses it might have over the side affects esp with my husband's current other health issues. We then discussed pros and cons of surgery (debulking) of the liver. He pulled up the pet scan images (my husband is visual and needed to see this) and showed the tumors, some very tiny possible tumors that didn't show on the scan and some possible cysts. My husband asked about doing an ablasion vs surgery. The surgeon said the tumors are too big for an ablation plus one is to close to the gallbladder. He recommend that bc things have changed since our last visit he would recommend surgery but it would be up to my husband, and as to when. He also explained the surgery, surgery time. time out of work, and emphasized it was a major surgery. I was impressed that he also mentioned that he meets with the Board and would be discussing his case with other Drs of different specialties. And said that his oncologist should have been keeping him updated on my husband's progress. Had we known that I would've made sure that he was kept up with my husband's progress. We also asked for a recommendation for a different oncologist. And we went with the one who saw our son when was initially diagnosed with cancer. We left with all of our questions answered and my husband seems to be ok with the surgery but doesn't know when to do it. It was a lot for him to take in, and I get it. He needs to just let all this sink in and figure it out. Unfortunately, he's the guy that will find every reason not to have it done. Which we discussed with the surgeon that if he were to wait until next year then there will probsbly be more growth and surgery would be more entailed. We left it at, my husband will decide when and call back to schedule. He does have another appt in Dec that was our initial follow up that we left in place so that we can ask more questions and hopefully get this set up. I feel better now and not the doom and gloom that I did before. We did not discuss prognosis. I felt like that would be too much at once. Plus there is no set guarantee at this point. I feel helpless and I have no control over his decision or plan. But I did remind him we are in this together and I'm a vital part of his treatment. He agreed. Patience is not my thing.....I would want it out of me if it were me... but it's not me. So I'll wait. When the time is right I'll approach the subject again. Having surgery by end of year has more plusses than next year. And he knows that. Once he makes a decision I'll let y'all know. Thanks all

Hi Teresa, Thank you for sharing your story and suggestions. I'm assuming your surgeries were from blockages in the intestines, or no?
Our appt with the surgeon went very well. He's the type of Dr that we like. We said we came armed with questions and he said... great, I'm ready, bring it on. So first off, my husband had admitted he had been in denial and we needed to establish his staging from the Dr. He NEEDED to hear it from him. They don't always offer staging, so I asked. Is he stage 4 (which i knew but my husband didn't believe me). YES. Is this curable.... NO but it's treatable. We discussed the chemo pill his oncologist had sad was the next line of treatment bc the liver tumors are growing and the disease is spreading. The surgeon didn't recommend the pill for many reasons mainly, that being overall side affects, restrictions while on it and the bottom line was it wasn't really going to outweigh the minor plusses it might have over the side affects esp with my husband's current other health issues. We then discussed pros and cons of surgery (debulking) of the liver. He pulled up the pet scan images (my husband is visual and needed to see this) and showed the tumors, some very tiny possible tumors that didn't show on the scan and some possible cysts. My husband asked about doing an ablasion vs surgery. The surgeon said the tumors are too big for an ablation plus one is to close to the gallbladder. He recommend that bc things have changed since our last visit he would recommend surgery but it would be up to my husband, and as to when. He also explained the surgery, surgery time. time out of work, and emphasized it was a major surgery. I was impressed that he also mentioned that he meets with the Board and would be discussing his case with other Drs of different specialties. And said that his oncologist should have been keeping him updated on my husband's progress. Had we known that I would've made sure that he was kept up with my husband's progress. We also asked for a recommendation for a different oncologist. And we went with the one who saw our son when was initially diagnosed with cancer. We left with all of our questions answered and my husband seems to be ok with the surgery but doesn't know when to do it. It was a lot for him to take in, and I get it. He needs to just let all this sink in and figure it out. Unfortunately, he's the guy that will find every reason not to have it done. Which we discussed with the surgeon that if he were to wait until next year then there will probsbly be more growth and surgery would be more entailed. We left it at, my husband will decide when and call back to schedule. He does have another appt in Dec that was our initial follow up that we left in place so that we can ask more questions and hopefully get this set up. I feel better now and not the doom and gloom that I did before. We did not discuss prognosis. I felt like that would be too much at once. Plus there is no set guarantee at this point. I feel helpless and I have no control over his decision or plan. But I did remind him we are in this together and I'm a vital part of his treatment. He agreed. Patience is not my thing.....I would want it out of me if it were me... but it's not me. So I'll wait. When the time is right I'll approach the subject again. Having surgery by end of year has more plusses than next year. And he knows that. Once he makes a decision I'll let y'all know. Thanks all