Monthly Archives: October 2016

NET Cancer Day 2016

Thank you for your interest in the World NET Cancer day on Thursday 10 November 2016, and the “Let’s Talk About NETs Campaign”. World NET Cancer Day is an annual, awareness-raising event coordinated by the International Neuroendocrine Cancer Alliance (INCA) at an international level. The PheoPara Troopers is partnering with INCA in this effort.

Neuroendocrine cancer (NETs) is the umbrella term for a group of unusual, often slow-growing cancers, which develop from cells in the diffuse endocrine systems. Pheochromocytomas (pheos) and paragangliomas (paras) are types of NETs that most commonly develop in or near the adrenal glands and throughout the sympathetic nervous system, but can be found anywhere in the body. NET cancers are on the rise and can affect both men and women of any age.

The aim of World NET Cancer Day is to:

• Raise awareness of NET cancers among decision makers, health professionals and the general public. Accurate information is key to improving quality of life and prognosis for NET cancer patients and can decrease misdiagnosis
• Focus on NET cancers for a day to bring hope and information to people living with NET cancers, their caregivers and families
• Ensure equity in access to care and treatment for NET cancer patients around the world
• Encourage more funds for research, treatments, patient support and resources for NET cancers.

To make this day successful, we are seeking support from all over the world. We are asking people, cafeterias, cafes and others, to use our World Net Cancer Day (Let’s Talk About NETs) branded coffee cups for the day. We will provide (at no charge) you with our branded coffee cups, lids and promotional material. Additionally, pheo/para patients, family members or other volunteers might seek your permission to make use of your venue to host an informal chat about NET cancers on that day.

We thank you for your interest in raising much needed awareness for NET Cancer on World NET Cancer Day, and helping us seek a cure for NET Cancer.

For inquiries and information regarding World NET Cancer and the “Let’s Talk About NETs Campaign contact us by emailing paratrooperkim@gmail.com.

My Path Toward Becoming a Physician

Category:

Brittany Zaita, age 17
New York

A person who is diagnosed with a rare cancer such as Pheochromocytoma/Paraganglioma faces the issue of becoming extremely dependent on an array of doctors and experts who can give all the knowledge that they possess to achieve a proper treatment plan. The difficulty lies in finding the right doctor, who will do everything in their power to customize a treatment plan around your illness and have the ability to maintain your quality of life.

As a patient, being surrounded by these teams of doctors made me feel humbled to know that even though my case was presented as a challenge, there was active participation of all parties to find a way to give me the life that I had deserved. It’s a feeling I still to this day cannot describe, but it excites in me a fire and a passion to pay it forward on behalf of their efforts.

One of my doctors at Memorial Sloan Kettering Cancer Center in particular touched me, because at a time when most doctors were telling me it couldn’t be done, he assured me he would do it. His name is Michael P. LaQuaglia, and he is the Chair of Pediatric Oncological Surgery at Sloan. This man has saved my life in ways he will never know; he instilled in me a hope for my future, and gave me back the fight and fire that had been wavering at the time of my diagnosis.

When I got to Fordham University in the Fall of 2015, I couldn’t wait to start studying the sciences and preparing myself to apply to medical school. During one of my routine visits at Sloan, I was able to see Dr. LaQuaglia and when I had told him about my schooling he suggested that I shadow him. This shadowing was one of the greatest opportunities for me this summer and I have gained even more respect and insight toward the healthcare aspect of fighting this disease.

From a patient’s perspective, everything is unknown, and this is highly anxiety provoking. The role of the doctor is to fill in those holes, to answer all questions, with the hope of putting most fears to rest. I used to think that it was agonizing to wait for hours to hear the details of my case and treatment plan, but being on the other side showed me that the doctors work non-stop, and not only that but they care for the patient and the patient’s individualized needs. Dr. LaQuaglia, especially working with pediatric patients, always tried to help the patient understand and feel in control of their bodies, which I felt was important because I know how a cancer diagnosis can work hard to strip you of your faith and identity. This part gave me the most hope, it is reassuring to know not just how much your doctors are capable of doing for you, but also how much they are willing to help you and make you feel good.

The highlight of my shadowing position was being able to see the science behind it all by scrubbing in on some major surgeries. The calculated use of anatomy and physiology combined with the trained hands of amazing surgeons caused tumor to be removed, and a majority of healthy tissue to be spared and saved. We were even able to visit Pathology and see the slides of the tumor made, which gave us an ability to look at the cancerous cells and decide if the resection was a success. The ability to spare as much healthy tissue as possible can really influence the quality of that patient’s life. I attribute my current stable disease status to the clean resection of my primary tumor and lymph nodes. The science behind my surgery has allowed me to be free from chemotherapy, radiation, and surgery for almost 3 years now; it’s really given me a taste of normalcy.

In all, I have profound respect for those in the health care system. They work countless hours to keep you and your loved ones living a healthy and happy life. Doctors will spare a meal, skip a restroom break, and rarely sleep just to ensure that every one of their patients are accounted for and taken care of. It’s a fast paced environment, but it’s worth every good day that you can give to your patient. It is one of the most selfless professions. The advancements made in science are driven by doctors and minds whose motivating force is their patients’ well-being alone. The research of diseases such as Pheochromocytoma/Paraganglioma is powered by our patient base and our doctors who work together to make breakthrough discoveries.

So, when you get the chance, remember to thank your doctors for not only keeping you alive, but for inspiring the hope to be an agent of change as well.