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    Celebration (Remission): I have been declared cancer-free based on test results, but the celebration is tempered because risk of recurrence is so high. Positive: this is a very slow-growing "nonagressive" cancer. Negative: my liver has to be rechecked every 3 months. I'm seeing a specialist in June.

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    Procedure or Surgery ("24 hour urine test" and nuclear body scan): These were tests to determine hormone levels and metastasis to lymph nodes as guides to determine further treatment. Urine test was no big deal. Frankly, the nuclear medicine nurse and tech scared me silly at the nuclear scan. They repeated the 24 hour scan "just to confirm", but would not tell me why or what the saw, and would not let me see the scan or talk with the hospital radiologist. Had to wait a week and a half for results.

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    Cindy117 wrote on Bravmo's wall

    Hi, Bravmo, I also have NET and understand your feeling of "living with cancer as a chronic illness." I was diagnosed in March. Right now, post-surgery, my scan show me to be cancer free and no treatment is recommended. However, I have been referred to the only NET specialist in my state (one of the handful in the whole country); I have an appointment next month. My local oncologist tells me that I can expect 3 to 6 month follow-ups and 6 to 12 month re-scans for the rest of my (hopefully long) life. On the one hand, I am celebrating being "cancer free." On the other hand, I know that at any time that might change. I'm working hard at adjusting to living as a cancer patient who doesn't have cancer.

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      Cindy117

      I'm hoping to get into one of Dr. Strosberg's clinical trials. I'll let you know, but I don't see him until June 23.
      In what city/state so you live? And where is/was your original tumor?
      Mine was at the illeo-cecal valve (low enough in the small intestine that it was found in a routine colonoscopy -- talk about Providence), so they could get the whole tumor surgically but the cancer had already spread to 50% of the tested lymph nodes.
      By the way, my gastroenterologist, widely known as one of the best in central Florida, had no idea what it was when he found it. Plus the first biopsy came back "normal small intestine tissue." Luckily, Dr. Bob refused to believe it and pushed for a second biopsy. Then he had to do some research on NET because he had never seen an actual NET tumor. My surgeon told me his practice (5 surgeons) typically sees about 1 NET case per year.
      I did have, in fact still have, carcinoid syndrome, but neither my General Practitioner nor Allergist knew that such a strange combination of symptoms could be an indication of cancer. They were frustrated because they were unable to diagnose via x-ray what for all the world looked like asthma. And celiac testing was also negative, but it was determined that I am gluten sensitive; going gluten free has made a huge improvement on the diarrhea front.

      over 6 years ago
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      Bravmo

      Hi Cindy, by the way my name is David, I live in a suburb of Dallas, and go to Baylor Hospital, and Texas Oncology in Dallas. I originally had lung cancer in 2010, I did an extreme 8 months of the most aggressive chemo that can be administered. I was I thought "cancer free" for 3 years. In my normal yearly scan, new n oh dules/tumors showed up. NET is usually misdiagnosed, but luckily they were able to see the NET from my blood test. They actually are not sure where the primary cancer is/was..... At this time, I have some tumors in and around my liver, and some surface cancer on some ribs (not bone cancer!) Most of the time I feel great, so good that I forget I'm sick.
      As soon as I found out last November that I was sick, I completely changed my body over to alkaline to enhance my immune system. I also juice every morning with 25 fresh fruit and vegetables. I have completely changed my diet. You can Google "juicing for cancer", and also you can Google "acid to alkaline" and the benefits of switching your body to alkaline.
      I have lost 30 pounds, not because I am, but because of my new diet. No red meat, no fried foods, no fast foods, no processed foods. It started out being work, but now I am addicted to the new regime. If you decide to pursue this, let me know and I can send you my juicing notes.
      An example: pineapple is the only fruit that has a substance in it that shrinks cancer tumors!
      Watermelon has a substance that reduces inflammation..... I have done 4 months of research on the benefits of the juicing. All things I am doing are to enhance my immune system!

      over 6 years ago
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      Cindy117

      Wow, David, I respect your commitment to your health. I too have lost about 30 pounds -- since going gluten free in March. I really don't miss the bread/pasta/etc., and really like the increased energy and decreased body aches and pains. I am a type 1 Diabetic, so I monitor my diet closely but have really not gotten into much research on anti-cancer and immune system nutrition. I enjoy both pineapple and watermelon, so I'm glad to know they're so good for me. Please do share any juicing information you'd like. I'm definitely interested. And if you'd like any sugar-free, gluten-free "hacks" on family-friendly recipes, I'm your girl!

      over 6 years ago
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    Other Care (Taking care of myself and reaching out to others): I'm a writer, and the way I take care of myself is to write what I feel and experience. So, if you'd like to see my "blog", please go to my Facebook page "Cindy K. Marshall, author"

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