Neuroendocrine Tumor

Join the Conversation on
Neuroendocrine Tumor
156 people
0 stories
9 posts
  • About Neuroendocrine Tumor
  • Explore Our Newsletters
  • What's New in Neuroendocrine Tumor
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    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

    13 comments
    Post

    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.

    www.youtube.com/watch

    #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

    1 reaction 1 comment
    Post

    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.

    13 comments
    Post

    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

    Post

    Have any of you been on affinitor? I’m starting on Monday for neuroendocrine metastasis to liver. Im a pnet btw. #Distalpancreatectomy


    #NeuroendocrineTumor