7 Things You Learn When You Get Neuroendocrine Cancer at 23

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1. I learned what neuroendocrine cancer is

At 23 years old, I was diagnosed with an aggressive form of neuroendocrine cancer. Initially, I remember thinking “great- not only do I have cancer, I have a rare cancer that I’ve never even heard of!” Now, after completing treatment and in remission, I feel as if I could teach a class on the subject! I learned that tumors, like mine, arise from the neuroendocrine system, which is a collection of hormone-producing glands that control and regulate things like metabolism, growth, reproduction, and sleep. Many people with neuroendocrine tumors do not develop symptoms, so the growing mass is often detected incidentally, which can lead to a late diagnosis and unfavorable prognosis.

2. I learned that trust is a key element to survival

At the time of my diagnosis, I was at only 23, and at the time I felt I  knew all of the answers- even how to treat cancer, apparently. My doctors determined that my tumor was small and localized. I thought that meant it could be surgically removal without further treatment. However, my doctors informed me that the tumor was classified as “high-grade” and without aggressive treatment, it could spread to vital organs. From that point on, I knew I’d have to abandon my “know-it-all” attitude and trust the plan my doctors had implemented for my survival. If you don’t trust your doctors, going through treatment will be a lot more stressful.

3. I learned that all chemotherapy medications are not created equal

Before starting chemotherapy, I did what any normal person in that situation would do- I researched the two types of medication I would receive, Etoposide and Cisplatin. Different types of chemo may be prescribed to different people, but these were the ones my doctors recommended for me. I wanted to be aware of any long-term side effects or possible risk factors that could detour my treatment plan. In doing so, I was more confident and became my biggest advocate for my own health throughout treatment. Arming myself with information and understanding my options was empowering, because I no longer felt like a bystander during my treatments.

4. I learned that radiation treatment won’t make you glow in the dark

If I learned anything in history class, it’s that large amounts of radiation could be detrimental to one’s health, and yet, as a part of my cancer treatment, I was ordered to undergo intensive head and neck radiation therapy. It took a while to wrap my head around that contradiction, but trust is key, remember? One of the initial questions I asked my Oncologist was if radiation would make me glow in the dark. The answer is no. However, I learned that radiation is actually a common form of cancer treatment than can be important for some patients. For me, radiation obliterated any remnants of the tumor and was the primary therapy that launched me into remission.  

5. I learned that awareness can save your life

My whole cancer journey began when I experienced chronic nosebleeds. I chalked it up to change in the weather and sinus issues. That is until I noticed a protruding bump on the side of my nose. Those symptoms combined had me sprinting to the doctor! I knew something wasn’t right, and I knew it was serious. I think the biggest piece of advice I can give to others is to be aware of your body and how you feel on a consistent basis and go to your doctor if something doesn’t feel right. Awareness saved my life.

6. I learned that there’s a prominent online community for those enduring the same diagnosis as myself.

Have I mentioned that neuroendocrine cancer is rare? I wanted to bring awareness to the disease, so I decided to make an Instagram account documenting my journey. To my surprise, I connected with numerous young women who’d fought or were currently fighting neuroendocrine cancer. It was such a relief to know that for once, I wasn’t alone.

7. I Learned that a Positive Mindset Will See you Through Any Obstacle you Face in Life

At some point in life, everyone’s presented with a challenging, life-altering obstacle. However, if you take a step-back and adjust your mindset to see even a sliver of positivity within that obstacle, you will not only overcome adversity, but you will become a stronger, more determined person as well.

To follow my journey, please visit my Instagram page!

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The information, including but not limited to, text, graphics, images and other material contained on this blog are for informational purposes only. The purpose of this blog is to promote broad understanding and knowledge of various health topics. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this blog. Ambry Genetics Corporation does not recommend or endorse any specific tests, physicians, products, procedures, opinions or other information that may be mentioned on this blog. Reliance on any information appearing on this blog is solely at your own risk.

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