Blog

July 1, 2023

By Guest Blogger, Julie Riecken,
NE NCAN Support Group Leader, NETs Patient

Personally, I would never run a triathlon. I envy those folks who are determined enough to start, let alone complete such a physically and mentally challenging feat. Back in 2014, when I was first diagnosed with a pancreatic neuroendocrine tumor (PNET), my cousin, Kate, completed her first triathlon after years of training and preparation. I remember being envious, yet so proud at the same time! Little did I know I was about to start running my own long-distance race.

Being a NET patient is much like running a triathlon. It’s physically and mentally challenging, and hopefully it’s a very long journey. Unfortunately, there’s no way to train or prepare yourself for the experience.

So, you’ve been diagnosed, and your situation may feel overwhelming. What can you do? Where do you go? Where do you find support? Here are just a few ideas that might help you feel a bit more in control of your situation:

1) Be sure to see a NET specialist at least once in your journey to make sure you are aware of all options. NET specialists see people like us every day, and they know the latest and greatest tools available in the toolbox. Knowing when to use each treatment is essential!

2) Be sure your local oncologist is willing to work with your NET specialist. Depending on where you are located, you may not have a NET specialist in your area. I see my NET team twice a year (it’s a 4.5-hour drive), and my local oncologist each month. If you’re like me and you don’t have a NET specialist nearby, make sure you are also working with a local oncologist for your immediate needs. The local oncologist will probably administer your monthly SSA injection (either Sandostatin or Lanreotide). Your local oncologist may also be the person to co-ordinate your surveillance scans with your NETs specialist.

3) Contact your local oncologist’s office to see if they have any resources available to you. My local oncology practice has yoga classes, meditation classes, mental health counselors, and patient advocates – just to name a few available resources. Patient advocates can help you with financial questions.

4) Be sure to sign up for co-pay assistance programs. Novartis (for Sandostatin LAR) and Ipsen (for Lanreotide) both have excellent co-pay programs. What does that mean? It means that if you have commercial insurance, (Unfortunately not available if you are insured by Medicare or Medicaid) the drug manufacturer will help you by paying your co-pays and/or deductibles. This should apply to your yearly insurance deductibles and co-pays, and really help your bottom line! It’s a lifesaver! (Note – co-pay programs are available for many drugs for a variety of conditions, so if you have a friend with any chronic illness, be sure to tell them this little hint.) Your patient advocate should be able to help you fill out any paperwork that’s needed.

5) Try to do something every day that brings you joy. For me, I like to sing – so I sing in the church choir and other local groups. When I’m not singing, I go for walks, work on my flowers, or try to learn something new on YouTube and then give it a try. Quality of life is important and a positive attitude is beneficial.

6) Contact your local NCAN group leader when you have questions about living with NET. While we’re all different, you are not alone. If you don’t have a local group leader, contact NCAN  directly (you can find lots of information their website ). Or do what I did and offer to be a group leader!

Most importantly – be diligent but enjoy your life. That may not mean running a triathlon but knowing that there are RESOURCES available can make your journey a little easier and less daunting.

And if you find that you need some extra support reach out. We’re HERE to help. You can reach us at  1-866-850-9555, 7 days a week, 365 days a year, from 9 am to 9 pm EST.