Being Your Own Best Advocate

August 4, 2017

The development of carcinoid syndrome, after a diagnosis of a neuroendocrine tumor, can be an intense and intimidating learning. It’s a change to your health that comes with questions and uncertainty, as the treatment path is long and different for every individual. But it’s also an opportunity to find answers and become your own best advocate for your overall health and future care.

We had the opportunity to connect with Jennifer Zuniga, a patient health advocate and person living with carcinoid syndrome. She is a member of the Board of Directors of the Arizona Carcinoid & Neuroendocrine Foundation, and she is a fierce activist for other individuals living with carcinoid syndrome. Through her own experiences, Jennifer has hard-won knowledge of the importance of being an active participant in your care, now working diligently to share her experiences and knowledge with others.

Since neuroendocrine tumors can be rare and difficult to detect, Jennifer’s journey to today wasn’t an easy one. It involved challenges with diagnosis, and took her seeking the opinions of several different doctors to receive her diagnosis. She began attending conferences, researching neuroendocrine tumors, participating in clinical trials, and asking questions of her care team; doing her very best to learn everything she could about the individual intricacies she was experiencing. Jennifer is tenacious about her own health, and searched for answers when her doctors were uncertain of what was occurring or the treatment path ahead felt uncertain.

Through our conversation, Jennifer shared her advice for individuals living with carcinoid syndrome, and their caregivers, who may be searching for answers and understanding.

  • Be your own advocate. Learn about your condition through research, reading, and ask questions again and again until you understand answers.

 

  • Search for the right healthcare provider. Find a doctor who will thoughtfully answer your questions. Look for a care team who has experience treating individuals with neuroendocrine tumors, carcinoid cancer, and/or carcinoid syndrome.

 

  • Develop a plan that works for you. Find a treatment path that works within your lifestyle. Don’t feel embarrassed if you need to modify your plan, be honest with yourself, and your care team, about your needs and find a support system that best fits those needs.

 

  • Don’t try to go through this alone. The treatment path for carcinoid syndrome is a journey that will involve highs and lows, as with any long-term condition. Having dedicated caregivers, family, and friends that know you well, people who can come to appointments with you, and listen to what you’re being told by your care team, will help you better understand your condition.

 

Remember that every patient with carcinoid syndrome has different symptoms, foods that may exacerbate those symptoms, and medications that they will be taking to treat their neuroendocrine tumors. Carcinoid syndrome and neuroendocrine tumor patients are sometimes called zebras because the conditions can be so difficult to diagnose. This means it is critical that patients learn as mush as possible about their condition and treatment plan, along with having confidence in the care they are receiving. Advocating for your own care is the best approach to develop this confidence, and being assured in your care is the outlook you need during this long-term treatment experience.

Categories: carcinoid syndrome
%d bloggers like this: