Cindy Lovelace's End Of the Year Review

As we turn the corner on 2016 and look to 2017 with hope and anticipation, I think it’s important to first say THANK YOU. Healing NET Foundation began three years ago with a vision and dream to think globally about how a physician and patient together could make a difference in the lives of NET patients and their caregivers. Our collective frustration at the lack of knowledge and resources among community physicians, and the possibilities of what technology available in Europe could bring to the U. S. were huge motivators. However, the vision and dreams could not have developed if not for friends and colleagues who believed in the Healing NET Foundation mission, the collaboration with other NET patient advocacy groups and expert physicians and health care professions, and without YOUR support. THANK you for the donations, the sharing of information, and the kind words that keep us going.

Dr. Liu has shared a perspective of where the NET community has come in the last year. I want to add to that from my perspective of both patient and Executive Director of Healing NET Foundation, and also introduce you to some folks who will play key roles in our growth and in our programs for 2017.

Our HNF Board of Directors is made up of patients, caregivers, business men and women, and physicians. They have various reasons why they serve, and I invite you to learn more about them HERE. They all bring different gifts of expertise and experience, but what they all have in common is heart. They want to give back. They want to make a difference.

Each year our Board comes together for a strategy meeting. We evaluate what has been accomplished, and we look at how we can best set up for the future. From our inner workings to the fruits of our labor you see, we put ourselves under the microscope, and we dream. I’d like to share a few insights from our recent session.

Healing NET Foundation has experienced exceptional reach and growth in our three years, and with that comes challenges. As relationships grow, and opportunities present to serve NET patients more, we have to be properly staffed and prepared to take full advantage. There is no time to waste in the NET community. This year we hired an administrative assistant. Several of you met Terrance Lewis this fall at the NCAN conference in New Orleans. He has brought much needed support to the organization; taking care of day to day business including thanking our donors, updating website, and keeping our books in order. As we look to 2017, we see how additional staffing is not a luxury, but a necessity to keep current programs, like the NET Primer and our Insights surveys, growing, and launch new ones.

We are also outgrowing office space, which has been a blessing this past year, as one of our Board members graciously donated in-kind our monthly rent and utilities. What a gift! In 2017, as we add a staff member, we will look for low cost, but appropriate facilities to grow responsibly.

We have set the date for our second HNF Summit, in February 2017. The inaugural Summit, Feb 2016, was an opportunity to see if we could bring together NET physicians from around the world, to discuss the intricacies of this disease. From every discipline, and from many different perspectives, it was a challenge to see if the dialogue could be meaningful and constructive. Wow, we were blown away by the ability of these great minds to debate, think, discuss, and think some more. We saw bridges built, and new collaborations begin. The stage is set for this year to further develop these bridges, and we are adding other health care professionals to the mix. How can the nurse practitioner, and the patient navigator help NET patients travel a complicated medical maze? How can patient advocates all work together to serve the community best?

As we look to 2017 with hope and anticipation, I am struck by the resilience of everyone engaged in this fight for better awareness, education, and care. My family would agree that I’ve always been a bit stubborn. When someone tells me no, I want to know why not. It can be a mixed blessing, but when it comes to surviving NET cancer, it has served me well. I also see that same (let’s call it resilience) quality in the patients I talk with weekly, the physicians and allied health care workers who are so passionate about this work, the folks who have cared and fought for loved ones, and the people who have not been personally touched, but who see a great need, and want to do whatever they can to help exceed it.

Together, we can do this. Thank you.

Cindy Lovelace, Co-Founder and Executive Director, PNET survivor

Click here for Dr. Eric Liu’s Year End Review

Christa Sundberg: Registered Nurse at University of California San Francisco (UCSF) Medical Center

I have learned an immense amount of new information by attending the 2016 NANETS Conference. I now have a deeper understanding of the treatment modalities and how they are decided upon. Also, it is great to have an understanding of genetics pertaining to this field. I' am eager to learn how the field advances with new studies and findings. 

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Marjorie Freedman: Diagnosed with invasive ductal carcinoma of the breast

I was originally diagnosed with invasive ductal carcinoma of the breast. Having a family history of breast cancer and a very thorough breast surgeon, I was required to have a chest x-ray and MRI prior to surgery. A spot on my lung showed up on both the x-ray and MRI. Biopsy confirmed a neuroendocrine tumor in my right lower lobe. 

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Julie Riecken: PNET (VIPoma) with Liver Mets

Julie Riecken: PNET (VIPoma) with Liver Mets

I really didn't have access to good information in the first year after my diagnosis, and that made me uncomfortable. Knowing that I had cancer, but couldn't do anything about it was so frightening. Sandostatin helped greatly, but I was still having some issues, and the flushing that I'd had my entire adult life was getting worse. I didn't understand and was encouraged by my family to find a NET specialist. Seeing a NET specialist was a turning point in taking control of and understanding my disease. 

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Terence Nelson: Diagnosed with primary NET in ileum via CT scan in January 2012

Terence Nelson: Diagnosed with primary NET in ileum via CT scan in January 2012

I was diagnosed in 2012 and have had two surgeries (2012 & 2013). In 2014 I started seeing Dr. Woltering a NET specialist out of state. I would HIGHLY recommend anyone diagnosed with carcinoid (neuroendocrine cancer) to at least consult with a NET specialist as a second opinion or have their doctor consult with them. 

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Lela Selby: Neuroendocrine Patient

Lela Selby: Neuroendocrine Patient

In May of 2003, I felt a sharp pain in the left Ovary area. At the completion of an Ultrasound, I had doctors in my room. I was told that I had either Ovarian Cancer or Uterine Cancer. A week later, I had a complete Hysterectomy. Thankfully, I was told that I did not have either of those cancers. I was sent to a Colorectal Surgeon. I received a second surgery in June of 2003 and I was told that my appendix was the primary source of my cancer. The tumor on my appendix had been laying on my right ovary and caused cancer to travel to the left ovary. 

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Mitchell Maloney: Small cell neuroendocrine carcinoma

I was diagnosed on March 11, 2016, with neuroendocrine small cell carcinoma which is the most aggressive type of this type of cancer. It was found in the lining of my bile duct located outside of the liver. At the time, it appeared that it may have spread to the tip of the pancreas and involved some lymph nodes. There were also spots in my lower lungs and liver. The tumor was discovered during an endoscopy which was done because a CT scan showed a mass.

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Mary Powell: Neuroendocrine carcinoid of the lung

I knew I would get another cancer diagnosis (already had skin cancer). I just did not know that I would be diagnosed with cancer I have never heard of. My brother was diagnosed with leukemia in December 2012 and needed a stem cell transplant. I was a perfect match. In March of 2013, I went to MD Anderson to donate my stem cells. To complete my work up, I had a chest x-ray. Two days later, my brother's doctor called me and told me there was a spot on my lung and that I would need to do a lung biopsy. A week later she told me I had neuroendocrine carcinoid of the lung. Needless to say, we were both shocked. 

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Caregiver Mischel Page: Metastatic Carcinoid Cancer

Caregiver Mischel Page: Metastatic Carcinoid Cancer

After being misdiagnosed for 9 years, we finally had an answer. At the beginning of the journey, the first GI physician had my Zebra (mother) swallow the capsule for the endoscopy. This should have been the indication that she was a Zebra when the capsule became stuck in her small intestine. Soon after, the plan was to perform surgery to remove the capsule. Eventually, it came out on its own but with no pictures. The physicians could not figure why the camera quit working and why it became lodged and what made matters worse the physician never followed up

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Cindy Lovelace: Co-Founder (with Dr. Eric Liu) and Executive Director of The Healing NET Foundation

After being diagnosed with a rare cancer, Cindy started the Healing NET Foundation. This not-for-profit organization is dedicated to giving more resources to physicians who are treating neuroendocrine tumors.

April Boyd: Oncology Nurse at The University of Texas MD Anderson Cancer Center

April Boyd: Oncology Nurse at The University of Texas MD Anderson Cancer Center

I gained further information about the results of the NETTER-1 study including the improved quality of life that patients experienced who were randomized to the Lutathera study arm (as compared with high-dose octreotide). This is good information, though the numbers are small, and helps to alleviate my concern about the amount of nausea and vomiting (infusion-related) that these patients were experiencing when the study first began. 

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Jeff Ward: Stage IV Carcinoid Cancer in liver

Jeff Ward: Stage IV Carcinoid Cancer in liver

The doctor said he saw that my liver enzymes were "very slightly elevated" and he wanted to rule out any type of infection in the liver. I was sent for a CT scan (first of many) and sent back to the doctor with the verdict of multiple metastatic lesions on my liver! A week later I was meeting with a gastroenterologist and a liver biopsy was scheduled. After the biopsy, I went into what I later understood was a carcinoid crisis event with my heart rate dropping into the 30s and BP plummeting as well.

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Jan Eisner: My diagnosis was made as an incidental finding during a scan for a kidney stone

Jan Eisner: My diagnosis was made as an incidental finding during a scan for a kidney stone

My diagnosis was made as an incidental finding during a scan for a kidney stone. They noted lesions on my liver. I had a biopsy that revealed metastatic NET. I went to the Mayo clinic for treatment. At that time (1999) they offered surgery and suggested I follow up with my local doctor. Luckily my local doctor was familiar with NET and was able to refer me to a couple of doctors who specialized in NET treatment. The treatment options since I was first diagnosed have evolved substantially and I am so thankful for so many new treatment options. 

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Gary Murfin, Ph.D: Carcinoid of the Ileum with mets to nearby lymph nodes

Gary Murfin, Ph.D: Carcinoid of the Ileum with mets to nearby lymph nodes

Fall 2008: I had a colonoscopy and was diagnosed as carcinoid of the Ileum with mets to nearby lymph nodes, mets to my liver and to my sacral bone. I had no symptoms and no clue what this meant, but soon began to find out.  I was age 66 at that time and had just retired. One month later: I had surgery to resect my primary and the lymph mets, but I had nothing done about the 8-10 mets originally suspected in my liver and the one suspected lesion on my sacral bone.  My goal at that time was to learn more about this cancer. 

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Annie Suiter: Well Differentiated Carcinoid of Terminal Ileum with Liver Metastasis

Annie Suiter: Well Differentiated Carcinoid of Terminal Ileum with Liver Metastasis

I had limited knowledge of this disease when diagnosed as well as before my diagnosis of metastasis. I learned so much more following this and mostly because I went in search of it. It was not explained to me by any medical professional that I saw or worked with as being something that I will have to battle for the rest of my life. I was referred to a "gold standard facility" for an opinion from a "specialist" who did not share any knowledge with me but simply told me to go home and live my life as fully and as healthy as possible. I sought out information from the internet, support groups that I found through social media, and attended the national conference for patients. It is because of my research ONLY that I have a plan to see a true specialist in the area of NETS.

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