We have started this journal so that we can provide updates on Ed’s health. We thank you in advance for your care, concern, but most importantly, your prayers as our family travels this journey together. Ed is usually a very private person, but has agreed to sharing through this site.
On September 25, 2019, Ed was diagnosed with Metastatic Neuroendocrine Cancer. Mayo Clinic provides this description: Neuroendocrine tumors are cancers that begin in specialized cells called neuroendocrine cells. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells. Neuroendocrine tumors are rare and can occur anywhere in the body. Most neuroendocrine tumors occur in the lungs, appendix, small intestine, rectum and pancreas. There are many types of neuroendocrine tumors. Some grow slowly and some grow very quickly. Diagnosis and treatment of neuroendocrine tumors depend on the type of tumor, its location, whether it produces excess hormones, how aggressive it is and whether it has spread to other parts of the body.
There is much we don’t yet know about Ed’s cancer. This is what we do know so far: In the fall of 2016, Ed was seen in the ER for what he was sure was another round of very painful kidney stones. It turned out to not be kidney stones, but rather, pancreatitis, thought to be caused by one of his diabetic medications. During the ER visit, a "mesenteric mass” was seen on the CT scan. His doctor reviewed a scan from eight years earlier and was able to see the mass then as well (it was not noted at the time). The mass was in a very difficult, if not impossible area to biopsy and did not appear to have grown. The doctor recommended a “wait and watch” approach.
Fast forward to September 10, 2019: Ed went in to urgent care for severe abdominal and back pain. He again thought kidney stones, but tests were negative. He was sent to Wausau for a CT scan and it was discovered that the original mesenteric mass had grown and there were additional growths as well. He was then seen by a surgeon who recommended a procedure with a specialist who he felt would be able to do a biopsy on one of the tumors through the intestinal wall using endoscopic ultrasound. The biopsy done on September 25 showed malignant neuroendocrine tumor (NET).
Following the biopsy, Ed had another scan which is better at identifying this type of cancer, which is often difficult to detect. The octreotide scan confirmed the mass as well as metastases to 8 lymph nodes. He was then seen by a surgical oncologist, who recommended an extensive surgery called a “whipple procedure” based on the thought that the primary tumor may be in his pancreas. However, after Ed’s case was presented to the “tumor board”, they felt it was more likely that the primary site is in the small intestine. Rather than a whipple procedure, Ed would be scheduled for a bowel resection and removal of as many affected lymph nodes as possible. That surgery was scheduled for November 5. However, everything came to a screeching halt 5 days before surgery when they decided to postpone it “for a couple of months” due to Ed’s diabetes and thyroid issues.
This six weeks of waiting so far has been frustrating and the unknown is stressful. Ed has had some extreme pain, and we wonder if it’s from the cancer or something else. However, there have been some very evident blessings that have come forth. We were able to enjoy a wonderful extended Thanksgiving with all of our kids and grandkids without the added stress of medical “stuff”. Ed is thrilled with the extra time to get in some ice fishing before surgery.
I have been able to find some excellent resources for information about this rare type of cancer. The resources provide answers, but also cause lots of questions. Due to the limited experience typically found at many medical facilities, it is always recommended that you consult with a NET specialist. We are very fortunate that Ed has been referred to the Holden Cancer Center at the University of Iowa, considered top in the nation for Neuroendocrine Cancer. We are so grateful that our health insurance is covering the consultation, which is scheduled for Thursday, December 19. We are praying for a safe trip (5.5 hour drive) and an optimistic treatment plan for the future.
I will update this site after our visit to Iowa and as treatment and information unfolds in the future.
We again thank you for your love and for your prayers.