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Neuroendocrine carcinoma prognosis shocking

I am so very hopeful that someone out there can give me some much needed help.

My husband was diagnosed with neuroendocrine carcinoma in 4/2012. He had a large tumor in his lower rectum causing discomfort that prompted him to seek medical attention. We were advised the cancer had NOT metasticized outside the tumor but chose what we considered aggressive treatment with chemo (cisplatin & etopocide) and radiation/tomography rather than surgery that would have resulted in a colostomy. Surprisingly he seemed to handle the monthly chemo doses very well, but the radiation/tomo really took a toll on him. Much to our surprise at his 1st PET scan 8/24/12 we were told there was no sign of the cancer. Then, much to our surprise again, last Friday 11/30/12 his PET scan showed the cancer had metasticized into his lymph nodes and liver, and was again in his rectum. The oncologist has advised that he is no longer curable and should be thinking in terms of months for survival. He is willing to do another dose of chemo to buy time, but that it is just to prolong the inevitable.

Our diagnosis and treatment has been at the UW Madison Carbone Cancer Center and we have been very, very happy with our oncologist and feel we are at a stellar facility. On the suggestion of our oncologist for a 2nd opinion, we are looking at Cancer Treatment Centers in Zion, IL and hopefully can get there yet this week to see if they can offer an alternative to more or less throwing in the towel.

My husband is 48 years young, and other than the cancer looming in his body, he is in remarkably good shape/health. We have 3 children still at home 16, 13, and 9. I so desperately want to find some hope to at least be able to look beyond "months".

Anybody out there?


Hi. First of all, let me tell you that I am so sorry for you and your husband. I can't imagine how you must feel.I had breast cancer, so I can't related to your situation. I would advise,though, that you post that in the discussion boards here on CSN under the Colorectal Cancer Forum. I am sure you will get some responses there. This is more a general area that not everyone looks at. For something like this, I would definitely post in the Colorectal Cancer area.

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