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

@kim1965 thank you!! I am so very thankful that I found this support group. It is so wonderful to be able to share, ask questions and receive feedback from such an incredible community. Yes, we are all indeed on the sane team! I am a person of great faith and I am holding tightly to that as well. I am sending lots of “virtual hugs” to each and every one who is in this fight.

@mhcohan
Yes, I had a 26 mm lung NET destroyed with microwave ablation 4 years ago. However, in my case that was done because I have over 50 lung NETs/DIPNECH nodules scattered across both lungs/all lobes. That makes me ineligible for surgery as we need to preserve as much healthy lung tissue as possible. We’ll just ablate the most problematic nodules. I was told that surgical removal of the tumor/lobe is the standard of care had I just had that one tumor.

Having said that, the field of medicine is ever-evolving. Have you sought out a second opinion? Is the surgeon part of a NETs team? Consulting with a NETs team is a must. Best of luck with your treatment.

@tgsenn70 & et al: so sorry you are in the position of choosing NET tumor treatment. Been there, but without the fear of damaging kidneys. You are in a good place to get many peer responses to help you!
Personally my decision for Lutathera PRRT seems to be what my body needed to control my small bowel primary with liver metastases. I had fatigue, but really no complications-I did drink extra water after infusion to clear it out kidneys as a safeguard (the radioactivity goes through body & eliminated in your waste.).
The staff at each facility have their own procedure you will want to follow . I choose to stay in hotel the day after the first infusion near the hospital, just in case. After that I would nap on the 1& 1/2 hr drive home - and most of the next day from fatigue. During the whole 4infusion process I could feel things different in my gut & sometimes an ache- but I told myself “proof it is working”! It is very important to stay positive and visualize those tumor cells “blowing up” and dying!
As you research and compare treatments you will make the best treatment decision for your body. My best thoughts to you…. dbamos1945

@hopeful33250 Thank you so much for your prompt response. Yes, It is my first post. Small Lung nodules noted on CT scan in 2018, one in particular that was 8 mm has been growing slowly. Had biopsy in September and is was + for NET neoplasm. Just diagnosed. Have completed PFT's which were great and now waiting for PET Dotatate. Then I will meet with Thoracic surgeon. Do not have an oncologist. I do see a pulmonologist who has been following nodules since 2018; she ordered biopsy and gave me referral to surgeon.

@hopeful33250 forgot to say the nodule is now 23 mm ( it grew yearly from 8 to 10, 11, 13,15, 23mm). How do I find out if my thoracic surgeon is part of a NETs team? just ask I guess (?!)

@mhcohan
NETs specialists are few and far between. I'm not sure what part of the country you live in, but getting a consultation with a NET specialist right at the beginning of diagnosis and treatment is very important. @californiazebra might be able to tell you how she found a lung NET specialist.

Mayo Clinic has NET specialists at all three of its locations. Here is a link with information about obtaining a consultation with Mayo http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at a Mayo facility, here is a listing of NET specialists worldwide, with U.S. doctors listed first (from the Carcinoid Cancer Foundation website).
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Yes, asking the surgeon and the oncology team about their experience in treating NETs is undoubtedly a good idea as well. However, a NET specialist is still the best. NETs are a rare form of cancer and can best be treated by a specialist in the field. They tend to know about the best treatment options.

@hopeful33250 thank you so much for the wonderful information. I appreciate it very much. I live in Central Virginia, which is about 2-3 hrs to DC and northern VA and about 3 hrs to the border with NC. Unfortunately, do not live near Mayo. thank you for all the links you sent me.

@mhcohan
I am glad that the information provided was helpful to you. As I mentioned in my post, if you are not able to go to a Mayo facility, there are many NET specialists listed on the website from the Carcinoid Cancer Foundation.\: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

As I glanced at this list, I saw there are NET specialists in Virginia as well as North Carolina. I look forward to hearing how your treatment is progressing.

@tgsenn70

Greetings! I went through the PRRT in early 2024. It involved 4 sessions over 8 months. The first session began at 7:30 AM and I was released at 3:00 PM, so it took all day for the infusion. The remaining 3 sessions were the same. I was told that I could not ride in the same vehicle with anyone so I drove solo to and from the treatment center. Definitely take along a good book or something to occupy your time, including food for lunch. I was told I could not sleep in the same bed as my spouse, nor could I use the same bathroom. This lasted for 5-7 days but I went 8 days to prevent exposure. I couldn’t be within 6 feet of anyone for this time as well. The results were successful for at least a while, up to now anyway. I was a bit tired for a day or two with each infusion. I have been receiving Lanreotide injections monthly for about two years. Initially, I received Octreotide injections monthly. It will be 6 years in January since I was diagnosed. I am 67 and very active so I’m very positive that I’ll be around for a while longer. Early on in treatment I was advised that being overweight was a risk factor, so I purposefully lost 46 pounds and feel better for doing so. I wish you the very best in this journey…. Ron

@rschweer thank you for sharing!! I wish you the best on your continued journey.