Saturday, May 31, 2014

NETest Results

Last week I got my NETest results from Nancy Texiera.  My results were a level 3, which is in the low activity range of 1-4.  She explained that this a typical result for someone who has residual disease after surgery.  I have not seen the report yet but Nancy said she would send it when it is done.  She encouraged me and my fellow NY noids to come back up for our second test and she would have lunch for us.  If we do this at around the 90 day mark, that would be mid-end of July.  I wasn't sure what to expect from this test but the 3 makes sense to me given my situation.
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4 comments:

  1. UnknownJune 4, 2014 at 4:48 PM

    Beth,
    Do you ever fear the test results enough that you don't have the test? I feel like I am the ostrich who wants to stick my head underground when it comes to information. After I got labs done in Iowa (my Chicago doctor only does Chromogranin A for follow up) and I had my really high Pancreastatin level, I just don't want to have more labs. My husband really wanted to me to the Gallium 68 study, which I did,but I didn't want to. Now I go back for my 2nd Gallium and I don't want it. If I was offered the NETtest, I don't think I would want it simply out of fear. I guess if I felt like there was something new and improved that we could try with each piece of bad news then I would do it. But to me it seems like it just reminds me of the inevitable. Have you met people like me who treat labs and tests as the boogey man? Thanks, Sara

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    1. UnknownJune 4, 2014 at 6:41 PM

      Sara,
      I think a lot, probably more than half of cancer patients are like you in that they don't want to see so many test results and have what a lot of people call scanxiety! In my support group only 3 of us went to get the test and about 4-5 others said they did not want to do it for the same reasons you don't like tests. I'm more curious about new developments and am willing to be involved with a new test like NETest or a Gallium 68 scan. Maybe someday one of these new things will lead to a cure. What kind of treatment are you having? You can email me privately if you don't want it in public comments. Stay well.

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    2. EdJune 9, 2014 at 10:54 AM

      Hi, I totally get it. My doctor went from giving me 10 yrs. to 5 and now to 2 if my chemotherapy doesn't work. So.....I get it....but, information is power, right? We gotta stay strong and educate ourselves. Maybe we will get a cure?! Let's hope so. Right now, I'm looking for a plan b if the chemo doesn't work. Any ideas? ~ Ed

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  2. UnknownJune 4, 2014 at 7:29 PM

    Beth,
    Thanks for the insight. I don't mind sharing public as I am not very private about my cancer. I like your point about it might help others and find a cure. I will try to remember that when I need to have some tests. Currently on Sandostatin 20 every 28 days. I still have intermittent diarrhea, but overall I feel pretty good. I only work part time which I am able to do and have returned to training for short triathlons. Running can be tricky and always have to think of other options if diarrhea is a problem. I have MRI and follow up this month in Chicago then July to Iowa to see Dr O'dorisio and have 2nd Gallium scan. 1st scan showed intense uptake in 2 spots of liver which surprised him since my symptoms are so minimal. I'm thinking I may ask for increase in Sando dose since before my 28 days is up I have more diarrhea. Other than thinking about these tests I am doing pretty well. HOpe you are too. Sara

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