August 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

“Should I Stay or Should I Go?”

Who would have thought that this 1982 punk rock song would become my anthem while deciding when to go to the ER or not.

Those of us who live with a chronic illness like Neuroendocrine Cancer must develop critical thinking skills to help determine when a trip to the emergency room is the best decision or if our needs can be met otherwise.

I try to remind myself that an Emergency Room is for, well, emergencies and is is not intended to be used as a convenience to my regularly scheduled life.

Before heading to the ER, I always ask myself:

1. Is the symptom I’m feeling pain or discomfort?
2. Is the pain acute or chronic?
3. Did it start suddenly and is it debilitating?
4. Is my situation a flare up of a previous ailment which became aggravated?
5. Could my situation be equally evaluated or resolved at an Urgent Care Clinic?
6. Can I request a same day virtual visit with my PCP?
7. Does my PCP have an After Hours Clinic they recommend?
8. I honestly ask myself, “Is this truly an emergency?” Or am I setting myself up for many uncomfortable hours waiting in a less than peaceful environment?
9. It is important to ALWAYS TRUST YOURSELF. If you are having symptoms that suggest heart problems, trouble breathing, or stroke, call 911 and get to the ER as quickly as possible!

Once I have decided a trip to the ER is warranted, as a chronic disease patient I am as prepared as possible to get the most from my visit.

When I choose a facility I ask myself these questions:

1. Does my doctor practice there?
2. Do I need an ER equipped as a trauma center? A cardiac center?
3. Is the facility large enough to have the necessary diagnostic equipment?
4. Is it staffed with personnel likely to be familiar with rare diseases?

At the ER triage, I am very honest, accurate, and concise about my overall health prior to my current situation. I try to be as descriptive as possible about my symptoms such as pain intensity, duration, and locations. It is my responsibility to provide the information to help them solve my puzzle. The staff will first rule out out life threatening possibilities before they proceed to finding the source of my immediate discomfort.

One ER doctor recommends a 30 second synopsis of your reason for seeking current, immediate help. Then following with a 2 minute version to give the staff the bigger picture of your overall health status. Sounds impossible, but practicing your 2 minute health summary and being prepared to deliver it to any medical personnel at any time will help.

If possible, I always have an advocate with me at the ER to help remember instructions. I keep an advocacy bag readily available to take with me, which contains copies of current diagnosis, medications, and allergies. It also contains records of surgeries and my most recent scans. Emergency contact information and medical power of attorney paperwork is also included. I find it is helpful to keep a handful of change for vending machines and a sweater in my bag as well!

I like to be prepared for the possibility of being admitted for additional testing or being discharged with referral recommendations to my PCP or a specialist. Both are possible outcomes from a successful ER visit.

Finally, I make sure I understand my discharge instructions. (This is where another set of ears in the room can be helpful.) I keep all appointments and follow treatment recommendations by the ER. I also make sure my physicians are aware of the issue and resolution which prompted my visit to the emergency room.

Contemplating a visit to the Emergency Room is frequently an angst inducing event. Hopefully these tips will minimize frustrations for you and help you to be prepared in advance to make the most out of your visit.

One of our primary goals at NCAN is the education of our Neuroendocrine patients and advocates. By accessing the Resource Room and videos of previous patient conferences, you can increase your knowledge of typical and atypical health concerns unique to our disease. Additionally our hotline is open 356 days a year 9am-9pm so don’t hesitate to CALL.

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.