Jan 14, 2019 Latest post:
Mar 30, 2020
I want to welcome you to my sister Stacy's journey with Neuroendocrine Cancer. I know a lot of you have reached out and we greatly appreciate that, keep it coming! We thought it would help to start a Caring Bridge site for our family and friends so you have somewhere to go for updates, education, prayers and some extra love and support for Stacy and her family as they navigate through this difficult time. It has been a long road for her and I want her to remember, she is never alone! It all began about 3 years ago with what seemed like a really bad virus but her symptoms just wouldn't go away, she had headaches, raised red rashes, shortness of breath, wheezing, joint pain, muscle weakness, fevers, extreme fatigue, diarrhea, constant flushing and sudden weight gain. She had tests after tests, special scans, and labs at the U of M, Mayo Clinic and most recently the University of Iowa. After having PET scans, the tumor in her right lung had uptake which was an indicator of malignancy. We later found out it was there for years and was likely causing her debilitating symptoms, this led her to a Thoracic (lung) surgeon at the University of Iowa that specializes in this type of tumor removal. Surgery was a 2 phased approach and several hours long. They attempted to remove the tumor by doing a wedge resection (taking out only the area with the tumor) without success, so they transitioned while in surgery to the full removal of the right upper lobe of her lung. After we got through the first few days of pain, she started to improve and made it home for the rest of her recovery. The biopsy confirmed her diagnosis of Neuroendocrine Cancer, Her recovery has been very slow and unfortunately the symptoms have returned and continue to cause problems... so is the cancer really gone like the surgeon thought? Unfortunately no, more recent testing identified more tumors that spread to her liver, kidneys, left lung and left adrenal gland. On a positive note, Neuroendocrine Tumors are typically slow growing so they started her on 3 daily injections of Octreotide, this medication is designed to attach to receptors on the tumors to inhibit excessive hormone releasing into her bloodstream and will hopefully shrink the tumors as well. There is so much more to share and there will be more testing for Stacy in the near future so we will continue to use this site to keep you updated and provide you with some education as well; we are all learning along with her as this is such a rare cancer that doesn't behave like more common cancers. The cause of Neuroendocrine Cancer is thought to be hereditary; they do know it is not caused from toxins, chemical exposure, etc..There is no cure, but can be managed with conventional and not so conventional cancer treatments. It will be the fight of her life and Stacy as well as her family are ready to fight like crazy! Thank you all for your prayers, love, support, and well-wishes! Keep them coming!