Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
It was so good to get your update. I'm so pleased that you had a good surgical experience and that you were treated so well at Mayo Jacksonville.
How ae you doing now that you are at home? Are you managing meals and other activities ok?
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Yes no issues at home. I walk 3 times 1 mile each outing, I just take it slow and easy.,my stomach hurts/aches but it’s not bad. Today I drove myself to grocery store but had the bagger load my groceries. Trying not to over do it but I am a 52 yr old make that’s active in life. So far life is good but I’m not fond of giving myself a shot in the belly for the next 9 days. I have oxi for pain but I won’t need them unless I sneeze then I’ll probably cry
I was 53 when I had my first invasive surgery. This is what I did to keep from hurting when I had an expected sneeze or cough.
–I kept a small throw pillow nearby (put it in the car, take it with me when I left the house) and if I felt a cough or sneeze coming on, then I grabbed the pillow and held it to the incision area. For me, it kept the pain at bay (to some extent).
This, of course, was only good if the cough or sneeze was expected.
Just been diagnosed with neuroendocrine tumor of the pancreas! Will be having a PET scan soon with possible surgery within weeks. Shocked! Describes how I feel. The tumor is on the tail of the pancreas and is 1.7 cm and slow growing. Wait and see was an option, but I am scared of it spreading.
Hope surgery is the right choice.
I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after living with it for 10 years. For me my quality of life greatly improved after surgery but mine was functioning and made me very sick. Three surgeons recommended leaving it in (watching it). At the time of my surgery I had two new leasions on my liver and had them removed as well. Three years after the surgery I have new spot on my liver. I wish I had the surgery when I was first diagnosed but decisions are easier to make looking backwards and I had a lot of improvement after the surgery.
Thanks for welcoming 👋🏻🌼
Thank you for responding . You give me hope as I navigate this journey. Hope you continue to do well.
Hello 👋🏻 @hopeful33250 CA 19.9 progressively getting higher and symptoms and imaging findings are more… what should I’ll be looking forward to? I’m really sick…
Any feedback would be greatly appreciated 🙏🏻 blessings of healing for everyone 🌼❤️🩹🤲🏻
Hello @suzyis7 and welcome to the NETs discussion group at Mayo Connect. As I've had three surgeries for NETs in the upper digestive tract, I really understand the shock that you are feeling. I never had any symptoms, so the surprise at having a rare form of cancer was hard to imagine. Typically, NETs are slow growing as you indicated.
I would encourage you to learn as much as you can about NETs. The Carcinoid Cancer Foundation (CCF) has some great patient information as well as videos from experts in the field. Here is their website, https://www.carcinoid.org/for-patients/. The more you understand about any disorder, the better prepared you will feel to deal with it.
Were you having symptoms that led to this diagnosis? Is your PET scan coming up soon?
No symptoms…..incidental finding from complaints of right side pain. Yes, my PET scan is today and I am concerned that it will reveal other tumors in other places.
This forum/group is wonderful! It helps so much to hear others explain what they are experiencing with neuroendocrine tumors.
Thank you for mentoring!
Your experience of an "incidental finding" is so common among us NET patients. My diagnosis was the same. No symptoms, but a routine EGD for GERD/hiatal hernia revealed the first NET in the duodenal bulb. Since the first surgery, I've had two more surgeries. My surgeries were in 2003, 2005 and 2016.
I look forward to hearing from you again. I hope you will update me with any findings from your PET scan today. Will you let me know of any questions you have as you walk this NETs journey?
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