I have a neuroendocrine tumour in the small bowel and liver lesions

@dbamos1945 good luck today.

Hello @lns83 and welcome to the NETs support group on Mayo Clinic Connect. I see that @vinnie694 and @dbamos1945 have already responded to your post and have shared their personal experiences with you.

I would enjoy getting to know you. As this is your first post, I would invite you to share a bit about your journey with NETs. Is this a new diagnosis for you? What treatments have been suggested?

@hopeful33250
Hello, I’m still in testing phase. I have four lesions on my liver, and some symptoms of carcinoid. Praying for good results, but just trying to gather info.

I wish you all the best and pray you all remain stable and healthy as possible! 🙏🏼

My husband has stage 4 also. Began in small intestine and spread to liver. We are waiting for insurance approval to start PRRT soon. I am wondering about maneuvering through the days after the treatment. The facility he will receive them at is about three hours away, so we will have to figure out travel arrangements. We’ve been told he will need to be isolated due to potential radiation exposure and he needs to have his own bathroom. Can anyone offer any advice, tips for cleaning and sanitizing, just protection in general? There is no question we want him to have the treatment.
Very sincerely,
Tonya

@vinnie694
Mine are similar to both, Small intestines with liver mets, stage 2, grade 4, Ki-67 5.4%. Taking Octreotide every 28 days. Feeling good! NET specialist suggested I add everolimus if symptoms change. Oncologist doesn’t feel it’s necessary right now, tumor is less than 1cm. Have my 3 month scan 12/1 & hoping things are still stable. Not looking forward to taking everolimus or PRRT, I have stage 3 CKD so hoping to hold off on both for a while.

@tgsenn70

I'm sure you are looking forward to your husband getting this treatment. We have several discussions devoted to PRRT. I suggest you post this question about radiation, isolation, and tips for sanitizing in one of these groups. Here are the links:
--PRRT Question
https://connect.mayoclinic.org/discussion/prrt-question/?commentsorder=newest#chv4-comment-stream-header
--Post PRRT CT Scans
https://connect.mayoclinic.org/discussion/questions-regarding-post-prrt-ct-scans/
In these groups, you will meet @dbamos1945, @vinnie694, @markmark007, @kim1965, and @sophiarose, and many others who will be able to answer your questions.

@hopeful33250 thank you! I will do that.

@tgsenn70
My wife had 3 cycles of PRRT that turned out very good for her with significant improvement in the size of the tumors in her case. Her primary was on the pancreas, and previously was unoperable, but the the between CAP/TEM chemo, and PRRT she was able to have surgery and move forward in her fight against NET. To answer your questions, the facility that is doing the PRRT treatment, should be providing documentation and coaching for all of your questions. I can remember some of the restrictions at home, different beds, different bathrooms, washing bedding frequently, keeping our distance from each other at home the first week after treatment. Besides the documentation your facility has, I'm sure you can finds alot of information online also. Let us know how us we can help provide any feedback, as we are all on the same team. You got this!

Is there a group for nets in the lung? Surgeon stated that treatment for a 23 mm neoplasm in the lung is surgery only, which in this case is would mean a lobectomy? has anybody been successful with other treatment options? Thank you so much for your help!

Hello @mhcohan and welcome to the NETs support group on Mayo Clinic Connect. Yes, there are discussion groups for lung NETs. Here are links to discussions about lung NETs:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=lung&index=discussions
In these discussions, you will meet @californiazebra, @ce1b, @pattirushing, and others. I trust that they will share their treatment experiences with you.

As this is your first post, please share as much as you are able about your NETs journey. Is this a new diagnosis for you? Were you having symptoms that led to the discovery of lung NETs? I look forward to hearing from you again.