Neuroendocrine Cancers

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How long did it take to get your #ME diagnosis?

Recently, #MEaction asked their community how long it took to receive their diagnosis of myalgic encephalomyelitis (ME). From over 400 responses from across the globe, the average time from their sample of responses was over 8 years to get a diagnosis.

I’m sure this didn’t surprise anyone in our community. I remember the frustration I felt going from doctor to doctor to doctor. Then 5 years later, I finally got a diagnosis from a doctor whose wife also had #MECFS . A year later I also got a Fibromyalgia diagnosis from a different doctor. And, in 2021, I was diagnosed with an aggressive form of a rare cancer called neuroendocrine cancer. It’s been hard to deal with all three because the symptoms overlap.

How long did it take you to get a diagnosis?

#MillionsMissing 2024: Teach ME, Treat ME

(edited)

#MillionsMissing 2024: Teach ME, Treat ME

Advocate for medical schools to Teach ME, and major hospitals to Treat ME
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Today, I won a battle against cancer.

#NeuroendocrineCancers #Cancer #Undiagnosed #ChronicIllness #ChronicPain #Anxiety #Depression

After having major abdominal surgery by a local superhero in an incredibly non-invasive way, I am at home resting comfortably with my family less than 48 hours from leaving the recovery room.

The fight isn’t over, and we’re not stopping (just resting and recovering for a while). I didn’t do this on my own – I have had amazing role models, I have an incredible support system, an amazing army of prayer warriors, and have found the most outstanding healthcare team available - and they’re here, the majority of my healthcare team, in my beloved hometown.

I had to fight VERY hard and diagnose myself. And finally found someone who proved me right and saved my life.

So glad today to be, well, absolutely me.

With much love and endless gratitude,

Melanie

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There was some comfort in being undiagnosed.

Yesterday, I learned that I have stage IV neuroendocrine cancer. In less than two weeks I will be having surgery to remove a good portion of my intestines, my gall bladder, and possibly my spleen. That will not remove all of my tumors. We won't even know how many there are until they open me up.

In July, I will finally be seen by a cerebrovascular neurologist at Mayo Clinic to have the lesion in my brain evaluated - as I also have a Chiari malformation, it is unknown if this is related to that, my cancer, or something else.

This will be a long road. I have a chance of beating this. There is much more to come - genetic testing, what else might be going on, targeted therapies - a lifetime, what remains of it, of medical treatment.

Today, right now, tomorrow, the next week, we're just huddling as a family and, well, that's it.

And guess what? My cancer is so rare and misunderstood (like me!) that I'm still a Zebra... that's the neuroendocrine cancer symbol and ribbon pattern. Yea, me.

#Undiagnosed #MightyTogether #RareDisease

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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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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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