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My name is Kathleen Cartland and I live in Charleston SC. I was diagnosed with carcinoid in April 2017, after having frequent bowel obstructions for five years. When a tumor finally showed up on a CT Scan, I opted for exploratory surgery.

Once being DX, I immediately “googled” NET tumors and found NCAN. Thanks to this organization, I was able to attend a NCAN meeting in Charlotte and quickly learned the upside and downside to this rare cancer.  The biggest downside was not having a NET specialist / oncologist in our large metropolitan area.

Recognizing that “knowledge is king,” and now understanding first-hand, “being your own advocate is queen,” I am very excited about organizing the first NET Support Chapter in the state of SC.  We hope to bring other NET patients and family members in the Coastal Carolina area together to learn more, share more and understand more about neuroendocrine tumors.

I live in Charleston and was diagnosed with Carcinoid Syndrome in May 2005. My primary tumor was in the small intestine and was discovered during a routine colonoscopy. I had surgery that removed the primary tumor and all affected Lymph Nodes. The tumors had spread to my liver and the surgeon felt I had too many tumors to remove.

My primary symptoms were flushing, diarrhea and wheezing. My Oncologist recommended the watch and see approach and the tumor were stable for about four years. Then they started to grow rapidly. My Oncologist told me nothing could be done and gave me five to ten years to live.

My wife, Teresa and I began to research other options. We went to The University of Nebraska for a liver transplant evaluation. MD Anderson in Houston and a few others medical institutions. We untimely opted for pRRT treatment and traveled to Bad Berka, Germany on four occasions and had there pRRT treatments. My liver tumors decreased by about 20% but again began to grow. The four GA-68 scans confirmed my remaining 14 tumors were isolated in my liver and ranged from 2cm to 7cm in size. 

With this knowledge I opted to have the liver targeted Sirs-Spheres treatment at the Medical University of South Carolina in Charleston with similar results. The MUSC Interventional Radiologist recommended Chemoembolization. I had the 1st Chemoembolization in December 2012 and the MRI scan a month later showed the tumors had been destroyed. I had a second Chemoembolization treatment in January and a third in February.

Every MRI scan for the past six years continue to show no signs of active tumors. I realize everyone does not have the same result but I hope this information will be helpful to another patient.

Hi, I live in Charleston, SC and have been the advocate and caregiver for my husband, Rob, who was diagnosed with NET in 2005. His primary was found in his lung after a year of battling doctors convinced he had asthma. The tumor was at the juncture of the bronchial entry to the third lobe of his left lung which required the removal of the entire lobe.

“Back then” even less was known about these less-than-common tumors and we were basically told they don’t return and he “should be fine” after the removal. Years passed and the follow up became more and more relaxed. After numerous other health challenges, new symptoms prompted me to push for a more aggressive follow up and in fall of 2018 we were told he had tumors in his liver, spine and pelvis and the original site in the lung was also questionable.

In the whirlwind of the past 9 months, we have had traveled and visited what seems to be countless doctors and specialists many of whom we clearly had more knowledge of NET than they. After liver resection in January and cyber knife treatment on Rob’s spine, we continue to search for the right treatment options for his continuing care.

Our attendance at the NCAN conference this spring was enlightening and we very much appreciated being able to meet more frontrunners in the fight against this crazy disease. I hope to bring the caregivers perspective to our SC Chapter meetings and look forward to us all learning together.