Neuroendocrine Tumor

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Neuroendocrine Tumor
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    Community Voices
    Community Voices

    You Are Invited!

    For the first time ever, I am premiering a video. This video is more important than I can put into words! You, my sweet friend are invited to my Pheochromocytoma Attacks and More watch party on YouTube: Monday May 17th at 10 am est. Be sure to bring a friend and share the link!!! Don’t forget your party gear: a drink, fun snack, and cute and comfy outfit.

    An amazing YouTube friend (subscriber), recently asked what happens during a Pheochromocytoma attack? I wanted to sit down to explain a little more, what is a Pheochromocytoma? I also talk a bit about the Adrenal glands and Adrenal Insufficiency. What is an attack? I go into as many symptoms as I can with as much detail as possible (with my foggy brain). There are tons of resources in the description for curious minds, care givers, patients, or anyone with a heartbeat.

    #Awareness #Cancer #RareDisease #adrenalgland #adrenalinsufficency #addisions #ButYouDontLookSick #InvisibleIllness #RareCancer #MedicallyComplex #MentalHealth #MentalIllness #mystory #symptoms #ChronicPain #attacks #Pheochromocytoma #pheo #NETCancer #NeuroendocrineTumor #Tumors #Pain #HighBloodPressure #AdrenalGlandCancer #AdrenalGlandTumor #Caregiver #Education #notalone #Hope #ChronicallyHopeful

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    Community Voices

    I HATE my body!!!!!

    I just took another shower, because I pissed myself again. At least I was home when it happened. At least, it wasn't a bowel movement, which has happened. I had a neuroendocrine tumor of the terminal ileum, resulting in surgery to remove it and a bowel resection with about 3 1/2 ft of small intestine removed, along with the valve that helps control bowel movements from moving too quickly through your system. It's been over 2 years of this!!! Taking different meds, some made my hair fall out but didn't help, tons of Metamucil that's supposed to "bulk up" the stool so it wouldn't be diarrhea. Trying different probiotics, still no real change. Drs have no other options for me to try, telling me "it should eventually get better". It's really sad when the best thing you've bought for yourself was a handheld bidet, so I use less toilet paper and stop aggravating hemorrhoids. Also, i have had Graves disease (in remission) but my metabolism is all messed up because of it. I am fat, really obese, have asthma, depression, anxiety, medical PTSD. I'm old and just truly fed up. I was planning on joining the Y, so I could swim for exercise, saving my painful knees from regular exercise. Then a stupid pandemic hits and I am so high risk, I really don't do much. Isolation doesn't help my depression and anxiety. I just had to get this out, to just let go of the pain and shame. At least for a little while.

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    Community Voices

    You can be both Brave and Afraid; At the Same Damn Time

    Merriam-Webster’s Dictionary defines brave as, “having or showing mental or moral strength to face danger, fear, or difficulty”. But does that really encompass all that is bravery? What if, instead of using our strength to face the fear – we used our strength to embody our fear, to aid us in being brave. What if, instead of a battle – it was a dance. Rachel Turner, who was my life coach the months prior and during my Paraganglioma diagnosis, wrote an incredible book called Brave and Afraid. The whole thing is brilliant. She mentions in the book a conversation with her dad, in which she talks about how she is trying to “punch her fear in the dick”. Rachel’s bluntness is one of her many qualities that drew me to work with her. She continues on illustrating the conversation; saying how her dad explains to her that fear is a normal human emotion, and to instead, imagine dancing with her fear instead of dicking kicking or fear punching it. Rachel goes on to explain that, instead of trying to remove this “thing” from your life, understand that you can’t ignore what’s real. So instead, try and imagine yourself dancing with your fear, to feel what it’s like to move with that feeling instead of away from it (Turner, 2019). This concept was so foreign to me at the time that I read Rachel’s book. I thought that being brave meant not being afraid, and just barreling through life with a make-shift bullet-proof vest on, hoping no one sees the blood starting to soak through my shirt.

    “You are so brave.” I think this is the statement I have heard the most throughout this process. But what everyone lacks to see is the amount of fear that walks hand in hand with that brave. There is a lot of unknown with my genetic disorder, as with most rare diseases, and with the unknown comes a lot of fear. Not knowing if or when I will get another tumor, is terrifying. That’s a hard thing to just stand up in the face of, and just “be brave”. In order for me to be brave, in the face of the obstacles that life has presented me with, there are a few things I have needed to accept.

    1. I cannot do this without the absence of fear, no matter what I previously thought.

    2. I don’t need to know what the future holds in order to make it through today.

    3. I have to dance with my fear. The macarena preferably.

    4. I am allowed to be afraid.

    Let’s not confuse being brave with being invincible though. If there is one thing the last year has taught me, it is that I am human. I am vulnerable. And life is a gift and not a promise. So be afraid. Feel fear. But also, be brave. Because you are.

    Neuroendocrine Tumor

    Rare Disease

    Community Voices
    Community Voices
    Community Voices

    Does Luck Play a Role in Receiving a Carcinoid Syndrome Diagnosis

    A few weeks ago, the day I closed on my new house in fact, I received a call from my doctor with some bad news. It turned out, he had run a couple of unusual tests, tests he said he ran once a decade. Against all odds, I had a rare kind of cancer that was incurable but treatable. One odd thing the doctor said was, “ We’re lucky we found it. ” A lot of people, he said, died of this cancer without ever knowing they had it. So, I’ve been writing poems — even before this new cancer diagnosis — about luck. I think it’s the beginning of a new manuscript. I’ve been thinking a lot about the way we think about luck, both good and bad. Being in the wrong place at the wrong time, celebrating Bastille Day only to be run down by a terrorist, or having a scan that incidentally discovers metastasized cancer in your liver on an ER run for stomach flu — we can’t control everything or protect ourselves from even the worst things we can imagine. Cancer was not on my list of things to do. But here it is. The next step for me is a radioactive scan to find out exactly where the cancer has spread. It also will be a good test for the main chemo drug used for carcinoid syndrome, sandostatin. (Though they are working on even better chemo drugs, sluggishly working their way through the FDA’s non-efficient system of cancer drug approval.) Then it will be a dose of monthly chemo for probably the rest of my life. My kind of cancer, neuroendocrine carcinoid tumors, and the associated carcinoid syndrome is rare, but not too rare — enough to have its own foundation and studies. As a kind of cancer, it’s not curable but not fast-moving, so in a way, lucky, right? And some people with carcinoid syndrome don’t get diagnosed until after the autopsy once they’ve died. So again, it’s lucky they found it after the seven or eight years they think it’s been hanging out in my body, causing the strange but sort of common medical symptoms (stomach pains, hives, fatigue, weight gain) that have been resisting regular treatments and confounding doctors. And now I’ll get treatments that will probably help the symptoms, hopefully more than the side effects of the chemo will hurt me. I have insurance and a supportive husband and at least a couple of doctors who care if I live or die. Lucky, right? An article from a Johns Hopkins study came out about a year ago that doctors and scientists and journalists alike scrambled to defy because the message was so disturbing. The message was: two-thirds of all cancer cases are caused not by lifestyle or environment or even genes, but by bad luck. (Here’s a quick rundown from “The Guardian’s” original article.) Well, people were outraged, because the message — that you can’t really dodge cancer by staying thin or exercising or eating right or wearing sunscreen or  living in the right place — is pretty scary when you think about it. It means we don’t have control over our health, often equated with virtue in our “all-American-health-and-thinness-and-lifestyle-obsessed” culture. I mean, I’ve been eating organic and mostly whole foods for ten years and gluten-free and dairy-free for about seven of those. Did that help or hurt or do anything at all? Do superfoods just feed your tumors faster or do they help destroy them? (Luckily I have a holistic oncology support doctor I’m seeing next week to help answer some of these questions!) I may have some relatives — back farther than my grandparents — who died of my kind of cancer, but didn’t die young. My father, working to help develop what became the CT scan machine at Yale when I was born, was exposed to all kinds of radiation for sure, but he is still pretty healthy at 75. Lucky? I grew up in Oak Ridge, the home of a bunch of odd cancer cases and elevated cases of things like childhood leukemia and thyroid cancer, where I undoubtedly— as you can read in The Robot Scientist’s Daughter — was exposed to radioactive elements in the milk, vegetables and fruit I ate from local sources as a kid from age 3 to 10, including our own garden in an area less than five miles downwind of Oak Ridge National Laboratories. So, was developing this cancer inevitable, part of my genes and my environmental pollutant exposure? Or was it luck? It’s a question that probably can’t be answered. The idea that cancer may descend on us out of the blue, and there is nothing we can do to avoid it is frightening. But I think mortality is sort of like that. We don’t get to choose or control what happens to us. I mean, we can definitely hasten things by say, smoking meth and racing around ignoring street signs and brandishing guns randomly. (I do not endorse that behavior, as a legal reminder.) But in many ways, our ending is out of our control. Whether or not we can make peace with that idea, is what we can strive for. Though we can control how we respond to things still, like the dehumanizing world of medical treatment, or people’s tendency to avoid people with disabilities or cancer, as if they are catching, or the anxiety and pain provoked by our diseases — and our insistence on being more than just the disease, on living life as engaged as we can be with nature, with other people, with improving not only our own lives but the world around us (like that little kid that started Alex’s Lemonade Stand for childhood cancer victims, a little cancer heroine if ever there was one). For now, it’s enough to just walk out in the sunshine and remember the stellar jays and hummingbirds, even the chaos of the new house renovation, are all part of the build and fall of the world around us, part of our own body and soul’s chaotic personal journey through the universe. The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here .