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Diagnosed with aggressive NET. Happy to see this group!
Neuroendocrine Tumors (NETs) | Last Active: Oct 17, 2017 | Replies (14)Comment receiving replies
Welcome
I too am a new to NETS, just being diagnosed in late May. My Carcinoid cancer attacked my heart so I am preparing for open heart surgery in 3 weeks to replace 2 valves. I had my injections of Sandostatin last Thursday and am feeling much better now. My liver is full also.
I bought the book "But You Look So Good" as well. The beginning is very informative and resourceful, the personal stories reinforce the importance to stay focused, and how staying positive is the name of the game. We all have doubtful days, but we do need to learn to quickly shake it off and find our smiles.
Best of luck to you, stay strong, ask questions, and find a doctor you really trust.
@mollie59
Replies to "Welcome I too am a new to NETS, just being diagnosed in late May. My Carcinoid..."
Thanks for all your encouraging words, they come at a good time. I will keep you in my prayers, as I do for all Carcinoid patients
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Mollie59,
I have a friend who had open-heart surgery last year and it was amazing to see just how fast she recuperated and went back to work in less than 6 weeks. I'm hopeful that you will have a similar outcome and it is comforting knowing that you will be in the hands of the Mayo Clinic.
I'm just short of nine years living with carcinoid and I also have a liver this is full of mets. I'm also living with heart disease (unrelated to carcinoid) and I'm praying that the injections will continue to keep the carcinoid at bay.
I agree with you about the doubtful days and shaking it off, staying positive and resourceful. I often tell people, “I may have cancer, but cancer does not have me.” I refuse to give cancer the power to control my outlook on life.
I have put your surgery date on my calendar and will send positive energy and thoughts your way. I'm confident that all will go well and that the treatment your doctors have in store for you will greatly improve your quality of life.