Possible NET: Waiting for the endo appointment

Waiting can be brutal and cause massive anxiety. It’s hard to accept not having control over something happening to our bodies. I know I have found myself feeling a wreck at times while waiting for tests and/or results.

What helped me was to try my best to relinquish control. To think of myself as standing as strong as I can while waiting, while also trying to accept that I cannot control the outcome. It can be like when you’re waist deep in the ocean and you see a large, inescapable wave coming in. Rather than struggle over something in which I have no control, it helped me to psychologically plant my feet firmly and wait for the worst of the anxiety wave to wash over me.

Have faith that you are not alone. Whatever the outcome, caring people are ready to help you through. And keeping positive helps. Recognizing that a bad outcome is just one possibility among many.

Try to eat right, rest and take care of yourself. Distract yourself by taking emotional breaks in which you don’t think about medical issues. These are the things that helped me. Good luck! 😊

I just saw my appointment was moved up to February 2!!!! I'm ecstatic to say the least. No clue why, who, what made it happen but I'm awfully glad it did. 😁

Thank you for the very thoughtful reply. It means a lot. ❤️. And I'll try to remember. After all, we really do have so little control over such things.

Keep in mind we have all been through this and are here to help you in with advice and suggestions we have used or were aware of. You got this. Let us know how we can help.

What I did was to do a deep dive into the process. First I set my long term goals into motion. Confirming I had all my financial affairs set so that my family could focus on my care. Power of attorney, money management, and any last request. This is important to get out of the way.

Then I started to focus on all things medical. Management of my health goals. Am I at the right place for the best possible results and second opinions if needed. What does my insurance cover or not cover as I move forward in the short term.

During all of this I fell back heavily on my religious roots.. and started cramming for what I thought would be my exit strategy.

Now after 18 months of my diagnosis of stage 3 lung NETs that has metastases to other organs I now focus on 3 things. Eating small, eating healthy, and living my best life. Trying to bring joy to others around me.

Most NETs diagnoses are such that my radiologist calls this the slow growth cancer. Not that it doesn’t come without a few unpleasant surprises. Symptoms have varied throughout the treatments.
Chemotherapy being the most challenging followed closely by the radiation when given simultaneously. For me fatigue and dizziness along with killer migraines became the norm.

I always recommend visiting the Ronny Allen website and the carcinoid.org for treatment and updates on the NET cancer.

I was devastated by my diagnosis and not in a good place mentally. I found a good therapist that helped me process and adjust to my new normal. It did wonders for me personally. Now I am able to enjoy my life better that the I was living before my cancer.

I pray you have positive results from your testing but know it’s not a life sentence if is bad news, but an opportunity to become a better you.

Sending love and positive energy your way

CEB

I've only thought about "getting my ducks in a row" and I do see doing that would give me more peace of mind. I'll get going on that today. All very sound advice and I appreciate you taking the time to pass along the wisdom. Positive thoughts, prayers, and hugs for you and yours.

I thought, What if my diagnosis is a 30 day expected shelf life. That appointment is 2 months away. I will have wasted most of my time worrying about the appointment then living. Enjoy today. Enjoy the little moments. And fight like hell to have more of them.

Mortality is never completely off my mind. Curiosity? Wonder? Dreaded fear? I think this time we have been given after diagnosis, is to exhibit gratitude, forgiveness and love which will lead us to becoming a better human who accepts death as natural process. Comment anyone?