NCAN Blog: Highways, Byways, and Road Maps.

April 1, 2021

By Anne Dabbs,
NCAN TN Chapter Leader, NET Patient

Almost all Neuroendocrine patients have referred to their diagnosis at least once as “My Journey”.

Many of us with NETs are fortunate to realize that ours can be a long, fulfilling journey if we align ourselves with proper specialists, tests, and treatments. What we do not always realize at the onset is that Neuroendocrine Cancer is rarely a straight and narrow, uneventful path.

“I need a road map!” said a local support group friend recently. She was expressing her frustrations at having to change course, yet again, while navigating this crazy disease. “My dad taught me how to read a road map. He even taught me how to fold one correctly!” she said. This exclamation reminded me of my father-in-law’s attempts to teach me how to fold a road map correctly, and to occasionally drive in the less populated lane in order to travel safely, and efficiently. I have not used a paper map in years, but my talent for focusing on my destination by comparing alternate routes has proven beneficial time and time again since my diagnosis.

I can not give my friend my Neuroendocrine road map with my particular folds and detours, but I and other patients can share our experiences to help her avoid some of the potholes and detours. This journey is hers and hers alone. We cannot tell others what is best for them. We can’t predict how their journey will evolve. However, we can encourage them by sharing our stories. We can promise them that they will never journey alone.

As you move forward on your own Neuroendocrine Journey, here are a few “Rules of the Road” to keep in mind.

1). Don’t be afraid to ask for directions! Someone with experience is always willing to help

2) Don’t drive alone. Make friends with others who share a similar journey.

3). Stay flexible. What you have envisioned and what becomes reality may often include bumps, detours, and realignments. Just keep moving forward!

4). Have a Road Map. Refer to it often. Be willing to change the folds in order to follow the advice of our knowledgeable and experienced NETs specialists.

5). Enjoy the Ride. Yep! Living Well with Neuroendocrine Cancer is our travel goal.

6). Call NCAN for Roadside Assistance. If you find yourself on the side of the road, feeling lost and unsure, give us a call. That’s what we are here for!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

Comments(6)

Lauren Clemmer says
April 14, 2021 at 1:23 pm

So true. When I was trying to get a second opinion on surgery I had four very different opinions. I reached out to my oncologist who said if I asked 20doctors I would have 20 different opinions because there is not a road map for this cancer. He told me to check back with the first surgeon and do what I felt was best for me. I did and I have not looked back.
- REPLY
  Anne says
  May 20, 2021 at 10:19 am
  
  Lauren, Thank you so much for reading and commenting on our blog. Your words ring so true for so many of us. We have to learn to make the best decision for ourselves at any given time and then live with that choice. It sounds like you have a good handle on Living Well with your diagnosis. Congratulations to you!
  Anne
Anita Greco says
April 13, 2021 at 3:56 pm

My husband is a Neuroendocrine Carcinoma lung large cell. NEC.
Need an oncologist that specializes in NEC. We live in FL. He has had surgery to remove 1/3 of his lung. And has had 12 sessions of chemo. Please advise.
- REPLY
  Anne says
  May 20, 2021 at 10:23 am
  
  Hello Anita, I regret that I have not seen your comment until today. Thank you for reading and commenting on our blog. I hope that by now you have found a knowledgeable and experienced Neuroendocrine Specialist to work with your husband. We are not in a position to advise patients, but I will encourage you by saying that there are at least two well known and highly respected Nets specialists in Florida. If you have not yet found a specialist for your husband, please call the NCAN hotline at 860-850-9555. Maryann will be happy to speak with you and offer some suggestions. My very best wishes to you and your husband. Anne
Ricky Coleman says
April 13, 2021 at 2:33 pm

My journey with this rare cancer has been a rough road I know some day I won’t be able to fight it any more but for.now I live for every day like it’s a gift ????
- REPLY
  Anne says
  May 20, 2021 at 10:29 am
  
  Ricky, Thank you for your comment and perfect attitude! It is so true. If we did not realize it before our diagnosis, we have surely learned it since then!
  Anne

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