Malignant Non-functioning Pancreatic Neuroendocrine Tumor
My name is Elizabeth. I am 43 yrs old, a wife, mother and cancer survivor. Cancer first came to visit me in 2004. Stage 1B2 cervical cancer, large cell non-keratinizing. I had a radical hysterectomy by my fabulous Gyn-Oncologist, Dr Krishnansu Tewari. He saved my life.
In late summer of 2016 I started having some minor issues very close to the location of the cervical cancer so he sent me for a CT scan. The CT scan was clear for my pelvic region but there was a subcentimeter mass sitting in the head of my pancreas, in the uncinate process.
My PC Dr then ordered a MRI so he could get a clearer image of this mass. It turned out to be a 12X14mm mass, about 1.4cm. I then spent the next 6 months being sent from one specialist to another. Neuroendocrine tumors of the pancreas are very rare, approximately 1 in a million, but it turns out they are even more rare in the uncinate process area of the pancreas. I have seen a half dozen Oncologists, each having a differing opinion on how to treat this tumor.
An endoscopic biopsy revealed that it was malignant. I have heard everything from ‘Lets wait it and see how it behaves” to “it needs to come out ASAP.” To remove a tumor in this location required a radical procedure called a Whipple Procedure where they basically re-plumb your digestive tract. They remove a good portion of your pancreas, which will most likely make me a diabetic, your gall bladder and the first 12″ of your small bowel. The morbidity of this procedure is quite high, as well as a significant mortality rate.
In February of 2017 I went to see a Neuroendocrine specialist at Stanford University. Due to my age and my Lupus diagnosis that I received in 2007 he recommended that we wait and watch it. At 2cm is when they will want to do the Whipple. Since there are so many adverse complications with this procedure he thinks the closer he can get me to 50 without a Whipple, the better off I will be. These tumors are typically very slow growing. For that, I am extremely grateful.
When I was diagnosed I asked everyone I could if they knew anyone who had a Whipple. I found a few who had but they were mostly in their late 60’s or early 70’s and a good portion of them had their tumor in the tail of the pancreas. The Whipple is much easier when the tumor is located in the tail of the pancreas, they can remove it laparoscopically with a small incision and solely remove the tumor and sometimes your spleen. The morbidity of this procedure is much less as well as the mortality rate.
So, for now, we will watch it and get scanned every 3 months. As it approaches 2cm is when it will have to be removed before it can metastisize to my liver.
If anyone reading this is ever diagnosed with the same thing I would be happy to talk with you. Knowing you’re not alone is so important and comforting. You can find me on Instagram under PicturePerfectMakeup92. I am also a makeup artist. I am grateful for time. Time to research, find good specialists, save money and most importantly, ENJOY LIFE! Please know you are never alone, just a few key strokes away from someone who knows what you’re going through and is always willing to listen. I am one of those people, please do not hesitate to contact me. Thank you for taking time out of your schedule and reading my story.
God bless you.