Neuroendocrine Cancers

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Neuroendocrine Cancers
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    Three Chronic Woes #chronicallyill #ChronicIllness #overwhelmed #Neuroendocrinecancer #ME myalgic encephalitis #EhlersDanlosSyndrome

    How do you cope when it is ALL coming at you at once? I was once a very independent, successful, super type A, corporate America gal who was so capable. Three chronic illnesses later I am exhausted, always battling brain fog, and my past coping mechanisms no longer work. Very quickly my life has spiraled out of control & I am feeling in such utter chaos that I don’t know how to right the ship. #hopeless #needhelp

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    Thank you for the add! #chronicallyillchristian

    Hi Everyone, I’m new to the group. I am happy to find a group like this on The Mighty! Living with chronic illness is hard & I am feeling lonely & isolated. I need to know there are others like me. #MyalgicEncephalomyelitis #NeuroendocrineCancers #Christian #lonely

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    Happy New Year #Cancer #NeuroendocrineTumor

    Hi all, I am not new to Mighty but am new to this group. March 2021, I was diagnosed with neuroendocrine cancer, a rare incurable yet treatable cancer, often called NETs, short for neuroendocrine tumors. On average it takes 5-7 years for patients to get a correct diagnosis as NETs mimic many other chronic diseases. In my case, it took 4 years. Meanwhile, the tumors spread from my small intestine to other areas of my body. I still have flashbacks (not as many anymore) of that one day in the hospital when I went from being treated for IBS and dehydration to metastatic cancer, or of the series of colonoscopies and upper GIs that didn’t catch it when I became overwhelmingly fatigued beginning in 2017, or of the dismissal by doctors in 2020 when my symptoms were out of control and all attention was given to Covid-19.

    To say the least, it has been difficult but God has been faithful. I surrendered my will, stopped the grieving of what-ifs, and amazing things started to unfold. Through a support group, I found NETs specialists willing to review my case as most oncologists are not aware of NETs and their sneaky behavior. I became educated and learned quickly that it was important to receive second, third, and (sometimes) fourth expert opinions on treatment options and the order in which to pursue them. Fast forward to this week’s scan where I learned I am stable with the current treatment. As you can imagine, I needed to hear this win. 💃🏽 Join me in celebrating. Yes, my healing testimony is on its way!

    Faith has truly carried me, my husband, and two adult daughters. There’s no way we could take this journey alone. We are blessed with supportive friends and family. To this day, not one has forgotten about us. Cancer survivors and patients I discovered through Google have given me much needed tips and inspiration. My fellow Mighty friends, you have encouraged me especially on low days when you didn’t know I was there with tingly hands that kept me from responding. Your stories, posts to each other, and fun games brought smiles to my face. (In fact, my first post from the hospital was to the Mighty and you helped me through.)

    As we near a new year, may we all be richly blessed with better days, deepened faith, supportive online & on ground friends, renewed strength, good health, positive thoughts, peace in the midst of chaos, and joy through our Lord and Savior Jesus Christ. Cheers to 2022! #Happynewyear

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    Dx w Ehlers-Danlos Syndrome & Nueroendocrine Cancer


    #EhlersDanlosSyndrome
    I have come across this website for many years. Now I am officially signed up :-) I wanted to let all of you know that I have noticed there are a handful of people within my support groups that not only have Ehlers-Danlos syndrome but have a diagnosis or a family member diagnosis of neuroendocrine cancer. for those who are also a “double zebra“ I have a brand new Facebook Group. Please message me if you’re interested in joining it. #unicornzebras #doublezebra #NeuroendocrineCancers #EDSAwareness