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peteperry's Message Board Messages

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Greetings Lynne,

 I am sure that there are many of us who struggle with the idea of not knowing how long .....

I am with you on the qualtity of life issue. I have come to realize that, in so many ways, my oncologist is only able to treat symptoms. The efforts made to shrink tumors or slow the progress often subtracts from the quality of life; just as you suggest in your commment about the radiation.

I have friends that have cancer too, but they seem to all be patients with a cancer that has some type of curative treatment plan. This neurocrine stuff, once it escapes the gastro-intestinal track seems to be unstoppable... 

Well, everyone seems to have a drawer or closet in their house that needs to be cleaned out, but never seems to be attended to. I'm putting my cancer in such a drawer and waiting for a rainy day to clean it out. 

Well wishes to you and thanks for taking the time to respond.

Cheers my friend,

Peter

 

At the age of 52  in August 2017, I had a carcinoid tumor removed from my  ileocecal valve area of my small intestine. It was found at the time of a colonoscopy. The thing was "huge" according to the surgeon (5cm x 3.2 cm x 1.2 cm) and was well differentiated. It was classified as a G1 with T3 N1 and a K-67 of <3%. They did a right hemi-colectomy and removed some lymph nodes as one was metastasized.  I've had follow up MRI and CT scans since. There are lesions on the liver, but they are suspected to be simple fatty cysts. 

In October the diarrhea returned...  I simply resigned my self to it. Now here we are in March and my oncologist did my first CgA and Serotonin draw. Both are slightly elevated with the CgA being 133 ng/mL (lab says high is >140) and my Serotonin is 237 ng/mL (lab says high is >244)

Oncologist wants to do a gallium scan. I've said I want to wait until the fall, as I am tired of being a cancer patient and want to simply not have to schedule around visits and tests. 

I’m told that this is a slow caner, so I am feeling like putting things off for 6 months can’t be too detrimental to my over all health. I’m not convinced that my CgA and Serotonin are outrageous and my diarrhea is cyclical as it comes and goes….What do you all think? 

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About peteperry

At the age of 52 in August 2017, I had a carcinoid tumor removed from my ileocecal valve area of my small intestine an. They did a right hemicolectomy and removed some lymph nodes as one was metastasized.

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