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.
new here. was just diagnosed with LiverNET. My symptoms were fatigue and diarrhea. Had an ultrasound, then a cat scan and finally a biopsy which confirmed the pots on my liver were cancerous. My PCP was very assertive to get the ultrasound as the original diagnosis to my symptoms was that my body was absorbing iron (also had a ferretin count 3x target). So I donated blood a few times but she was worried the increased iron could impact my organs and scheduled the ultra sound. My next steps:
1. Have a PET scan to find the source of the liver cancer (neck to toes)
2. Have an echocardiogram to see if the cancer has thickened the walls of my aorta (while not a common occurrence, it does happen)
3. Start the monthly injections (PRRT)
I'm feeling positive and hopeful and just started reading these posts. The support here is wonderful and I have a lot to learn. Any insight from people who have already gone through this process is more than welcome. We are scheduling to have #1 and #2 completed by the end of this month. Thanks
Jump to this post
First of all, I'm sorry about your challenges, but it sounded like you have a positive attitude which is so essential.
But a statement you made caught my attention. PRRT (which I have had) is not a monthly injection. It's a targeted, infusion treatment done every 8 weeks following a specialized PET CT (Lu-177 Lutathera) which identifies exactly where the tumors are. Sounds like your doctor wants to start you on monthly injections of Octreotide (Sandostatin) which are given every 28 days. It's frequently the first line of treatment. It should help the diarrhea, flushing, etc.
Hoping for the best outcome for you.
Thank you for the clarification. He mentioned PRRT and the monthly injections in the same sentence so I assumed that’s how PRRT was administered. I have my PET scan and echocardiogram both scheduled for 1/25 for follow up consultation with Oncologist on 2/1. Should have a better idea of next steps at the 2/1 meeting. Appreciate all the support.
It's overwhelming when you first get a medical diagnosis and feel bombarded with information. I've learned (over 5 years) to write down my questions before I go to help me stay on track.
And good for you for reaching out for support from people that have "been there, done that".
Thanks. I have a journal where I take notes during appts and write down questions. All feedback is appreciated.
My name is Penny. My wife, Cindy, had surgery on December 6 in which they removed two pieces of her small intestines. She was having repeated small bowel obstructions. She has had ulcerative colitis since she was 22 and she will be 62 on Thursday. At 52 they removed her entire colon and gave her an ileostomy. She still has UC in her rectum. This time they found a 3.5cm NET in one of the sections and in 2 of the 31 lymph nodes. Last week she did the chromogranin A test and her level is 421.2 ng/ml. She also takes pepcid and has since read that that and inflammatory bowel disease can cause increased levels. They want her to do a DOTATATE scan but due to ptsd she is not able to stay in the scan without having a panic attack. We have an appointment with a medical oncologist on Friday. Thanks for letting me join this group and I will pray for us all!
I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer in the Pancreas body along with small spots on my liver. I’m going on two years of chemo treatments. The cancer I have is rare and only consists in 1% of all pancreas cancers.
I have been of Chemo for almost two years and have tolerated the treatments very well. I’ve also had genetic testing done so I could provide with my family if this was hereditary so they could look out for this in their bodies. The good news was this wasn’t hereditary. I’ve been treated locally and have been to Dana Faber in Boston for a second opinion. Another good thing is my mail lesion on the Pancreas has shrunk about 60% fro the original size and the small spot on liver also decreased.
I’m always wondering if there is any other treatments that I can do along with the chemo to shrink the cancer. Feel free to charm in or contact me.
Praying for all cancer patients. 🙏🏻
My wife was diagnosed with NET in April 2022, with mass on tail of pancreas, and too many tumors on the liver to count. Our team started her on chemo pills, along with Lanreotide monthly injections for the last 9 months. The NET has been reduced enough that cancer team is ready for surgery March 1st to remove mass and as many spots on liver as possible. The team believes that they can make it a maintenance issue only afterwards. How have you been able to tolerate the 2 years of chemo?
I don’t know why I have tolerated the chemo treatments. So far I have had 38 total treatments. My two year mark will be in April 2023.
I’m so lucky that I’ve tolerated the chemo. I go every other week for treatments and have taken time off to go on vacation and took a month off for Cataract surgery and the Holidays. Thanks for reaching out to me. 🙏🏻
Hello All I too have Neuroendocrine carcinoma that started in my small intestine and metastatic to the inside of my liver along with a few other spots scattered in my liver . Stage 4 Liver cancer diagnosis been on the Lanreotide injection for about two years come February 10th. The treatment has been going well and I am very pleased and thankful for the medical team I have been with thus far. I do with everything in me Pray for All with Living with Cancer 🙏🏽
Hello @pennypowell and welcome to Mayo Connect and the NETs discussion group. I am sorry to hear about your wife's NET diagnosis. It always comes as a surprise. The DOTATATE scan is one of the best ways to track the NETs. Is it possible for her to have a med for relaxation prior to the scan?
Do you have a list of questions for the oncologist when you meet on Friday?
Even with the meds she says she isn't able to do the scan. She has has so many over the years that her anxiety is horrible.
We have talked about a few questions but I need to write them down. She has been though so much that she is thinking that she doesn't want to do anything. The decision is hers. It feels like we have been on a roller coaster with her health for the past seven years. We have been together for eight years. Three years ago she had major surgery to remove abcesses and mesh from her belly. She had fistulas also. When she came home from the hospital she had a wound the size of a volleyball that I had to pack. It did heal but over the past year she was having recurrent bowel blockages which is what lead to the last surgery. We are both tired. She is retired and I am still working and doing my best to care for her.
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In