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Prognosis for Metastasized NET

Neuroendocrine Tumors (NETs) | Last Active: Mar 20 11:16am | Replies (63)

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@sandy23

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?

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Replies to "I understand that metastasis means it's spread. What bothers me is his initial oncologist told him..."

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?