New diagnosis of NET: What should I know and do to plan?
Good morning. My name is Michelle. I was just diagnosed with a 2 cm NET in the tail of my pancreas. I am 54 and have lupus as well. I am having surgery to remove the tail of the pancreas and my spleen as soon as I have my vaccines next week and wait the 10 days. So the surgery should be the first week of May.
I had my gallbladder removed 11 years ago after being diagnosed with Lupus. I have had pancreatitis flare ups since 2011. I am not a drinker or smoker or I barely take any pain meds. I am a Marine so I know how to be strong and fight this mentally and block out physical pain.
I have to admit I’m scared of this diagnosis and what it means for life moving forward. I am not worried about diet changes or adjusting my routine. I already have type 2 diabetes and over the last almost 2 years blood sugar is never controlled and runs very high Diabetic medicines do not seem to control it as well as my husbands when he takes his medication I guess the tumor is why that may be.
I’m trying to put together a plan of what to know, do and how to prepare for the surgery and recovery.
What should I know and do?
Thank you and I’m praying for you all
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I do not have any knowledge pancreas tumor, but I was diagnosed with type 2 diabetes after being diagnosed with NET’s, .. I was told it is common with NET’s. Then while on the monthly NET support group meeting I learned of others that have diabetes as well.. I am currently taking meds prescribed by my primary care physician, I have an appointment with a endocrinologist to discuss alternative meds.. May you have a blessed day..
Thank you so much. Praying for you as well
I had a 2cm nonfunctioning pancreatic net on the tail of my pancreas as well. My surgery was Jan 09, 2023. I had laparoscopic robotic surgery and it was luckily quite an easy surgery and recovery for me.(my experience only.) I am 59yrs young, and currently not receiving any treatments post surgery and feeling good. I forget that I have this cancer type.
Have they told you if you have a functioning Or nonfunctional tumor? Functioning tumors often produce symptoms like you mention.
I was very nervous about the surgery and possible outcomes and complications. I caused myself a lot of undo stress and sleepless nights ruminating on the what ifs. You seem like a very tough individual both mentally and Physically. These traits will serve you well.
My best piece of advice is to get up and walk, and keep walking as soon as you can! It helps with recovery and aids in getting the body systems moving. Also, having a neuroendocine specialist is an absolute must. (Mine is Dr. Eric Liu)
Best of luck with the surgery! You are a tough United States Marine! You definitely can do this!!!!❤️
I’m so happy you are recovering so well. I hope to have the same good recovery.
They do not know what type (functional or non functional) as of yet.
I think just the thought of having something out of my control right now is stressing me out. I take my dogs for a walk and clean to distract me.
I will listen to your advice to get up and walk after surgery to get body systems moving and help in recovery.
Have you noticed any need to change diet? Did you have your spleen also removed?
My oncologist specializes in neuroendocrinology I have a good team of doctors surrounding me.
I’ll let you know how it goes. Thank you again for your advice.
I am glad that you have a great team of Doctors surrounding you! Having confidence in your team is so important. It is hard to not be in control, especially of our own bodies. This was my first major surgery. I found placing myself in Gods hand was all that I could do….
To answer your questions; At the time of surgery my Surgeon told me that I had a 50/50 chance of losing my spleen. (I had prepared by getting the required immunizations needed) Luckily, he was able to spare the spleen so I was very happy about that! I didn’t/don’t require digestive enzymes or any diet modifications .(You will most likely be directed to keep to a low fiber diet for 2 weeks post surgery.) However, after that period of time I rapidly resumed my normal diet. I haven’t had trouble at all in the digestive department luckily!!!
I smiled when you said you distract yourself by walking the dog and cleaning, those are my go to coping distractions as well!
Take Care, and God Bless!
I also have placed this in God’s hands and have my Bible study ladies praying with and for me.
Where my tumor is the dr is concerned he would not be able to save the spleen as it is right up against the spleen blood vessels.
I’m wondering if after the surgery some of the issues I have had such as heartburn, not keeping food down, dizziness, bloating and high blood sugar that doesn’t respond to medicine effectively will lessen or go away. One can hope.
My poor pups will wonder why mom isn’t up cleaning or taking them for walks for a while. But I’m going to get back out there as soon as I can without hurting myself.
Your recovery sounds like it is going so well. I’ll keep you in my prayers.
My wife received a diagnosis of mass of pancreas near tail of pancreas, and too many lesions on liver to count. Fast forward a bit, after 9 months of chemo CAP/TEM pills and Lanreotide injections, both tumors were reduced by 80% allowing for removal of smaller mass on pancreas, spleen removed, gall bladder removed, and debulk most of lesions on liver. She was a diabetic 2 before surgery, now considered a diabetic 1. Highly recommend the walking as soon as your able after surgery. She was in hospital for 6 days, before being sent home. Any other questions you have please let us know, we are happy to help you with info any way we can. 🙏🙏
I’m so glad she is doing so well. It’s helpful to hear each persons experience and advice. Thank you so much.
I’ll keep you all in my prayers
My story is similar to Kim's. Was diagnosed in August with stage 4 pancreatic cancer that has spread to my liver. Liver has too many lesions to count. At least over 200. Been taking CAPTEM since then. Big tumors are shrinking. Liver lesions have stabilized or reduced in size. So I will continue on CAPTEM and go from there. The oncologist thinks my diabetes is from cancer. I take one insulin shot a day for it. That's it. Blood sugar never moves far from 110.
I have a NET in the rare location of my breast, so I empathize. Much of the world is out of our control but as you probably already know–our attitude is under our control. I learned this in part from philosopher Victor Frankel–and he was in Auschwitz and had lost his family. As a doctor, he turned down the chance to escape because he wanted to stay with his patients. And he survived. I think your toughness of mind will serve you well, but my only advice is to focus on yourself and not on outcome. Outcome is more in G-d's hands…or for a less religious person–based on chance or fate. Wishing you all the best. I'll add that the 8 months since my diagnosis have been challenging but also full of richness, connection, and even fun.