Welcome to the NETs Group! Come say hi.

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.

Hi,
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!

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?

Hi,
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.

Thanks,
Penny

thanks prayers your way. I'll keep you posted he has not started chemo they are still giving him that shot. follow up ct scan in couple months after having the Y90 on two tumors.