Joyce Dyas: Regaining Control from Carcinoid Cancer

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Living with carcinoid cancer isn’t easy. Like many carcinoid patients, I had been experiencing symptoms for years, but originally thought it was irritable bowel syndrome (IBS). Since these tumors grow very slowly compared to other cancers, it usually takes many years before they become sizable or cause symptoms.

 

After an ultrasound in 2012, doctors found a primary carcinoid tumor in the terminal ileum (part of the small intestine). A carcinoid tumor is a type of neuroendocrine tumor (NET) that usually begins in the digestive tract. Soon after, I had surgery to remove the tumor and discovered that the disease had metastasized to my liver. Five months later, I had a liver resection and after which I developed carcinoid syndrome.

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

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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

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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

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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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Lela Selby: Neuroendocrine Patient

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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

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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

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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

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

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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

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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

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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

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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

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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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