I have recently been seen at University of Michigan and they have recommended a doctor who specializes in removing these small carcinoids using an endoscopy procedure.  I have been referred to him and look forward to learning more about this and the type of follow up that will be needed in the future.

Hi,<br />
<br />
I am not one to seek pity, but the understanding of my conditions instead,<br />
so as to set them aside without speculation, anxiety, worry, etc.<br />
<br />
This reasoning came from my experience over 77 years now with epilepsy, due<br />
to forceps delivery that caused pressure on the brain.<br />
<br />
With my Islet Cell Cancer, diagnosed in 2009; I went through 28 radiation<br />
treatments, two cycles of Adriamyacin and Streptozocin, 12 cycles of Sutent<br />
and 3 of Affinitor.<br />
<br />
I also have had Tuberous Sclerosis since 13 and am informed it's on the<br />
brain.<br />
<br />
I feel that I have begun the last year of my life; since in less than 2<br />
months I lost 17 pounds and 2 1/2 inches in my waist, along with muscle<br />
pain equivalent to muscle wasting.<br />
<br />
Take one day at a time within my healths means.<br />
<br />
Kay Kramer<br />

Treatment with prrt or octreotide

Hi,<br><br>Sorry to hear about your diagnosis. One thing doctors and research have<br>shown is that most neuroendicrine tumors tend to be slower growing than<br>many other types. After my last Octreotide Scan (Nov. 2015) we saw a 2.6<br>cm grwth mestasized from Islet Cell (of pancreas) to liver, with 2 other<br>uptake area's that likely will grow. It also showed uptake to Spleen, GI<br>and GU tracts. In essence, my Oncologist said it best "when it gets to<br>your liver, it gets into your blood and you have to watch for changes from<br>there on.<br><br>CBC and other blood panel changes, tumor marker growth or decline, and your<br>systematic changes can help understand matter more thoroughly.<br><br>Kay<br>