Carcinoid cancer: Want to meet others

Did the same thing come back in 2024? How are you doing now?
I go for surgery in a few weeks.. adn Plan on doing the "grandma" shuffle as soon as I can and as much as I can. They are planning on removing part of my small intestine.
Thank you for any advise you are willing to share..

Yes, it came back with a vengeance, it had metastasized to peritoneal lining, liver, gallbladder, bladder, appendix, small bowel, large bowel, diaphragm muscle. NETS surgeon performed a cytoreductive/debulking surgery; huge & painful surgery that took about 3 months to recover from. Have been on Octreotide injections ever since.

I forgot to include I’m doing fine, still do all activities I did before any of this started! Feel great, but I do get tired easily; it will be a year in November. Just had a follow up PET scan & I only have one small spot in lower colon that I’ve been referred for Lutathera treatment that I hope will zap it! You can do this & best advice is to stay happy & positive😊

I really hate to hear this.. is it common for this to happen?

Thank you .. this helps a bunch!.. Sending good vibes your way!

I think it depends on type & where it’s at. My NETS surgeon & oncologist said there is no cure for NETS, but mine is slow growing & can hopefully be contained.

I’m a grandma too, just turned 66! Ask any questions you want, I’m happy to answer them all. Please keep us posted on how your surgery goes, you will do great!

My NET was primary in lung (Jan 2023) 3 cm and metastasized to liver stage 1, 5 cm Ki67-2%. Very little attention has been paid to the lung as it has not shown much growth. The first 8 mos I had lanreotide injection every 28 days. CT scans showed the lanreotide did not slow the growth, so I was switched to oral chemo of Temozolomide 5 days a month. After 3 months my NET specialist discontinued it due to not showing to be effective. After that I had a bland embolization that did not work, then a mapping to determine if my tumor was receptive to radiation. On Jan 31, 2025 a Y 90 was performed. Today an MR I was done to determine the effectiveness, so stay tuned! My NET specialist told me that I would likely not die from this, but with it as it was a slow growing cancer.

I recently turned 57.. so worried this will be my end date.. so hearing you soooo positive has helped me more then you will EVER know.. BLESS YOU!!!!!!!

I was diagnosed with a pnet metastasized to my liver and bones in 8/22. It was functioning, and it blocked two important veins in the area. So, I got very sick. Surgery was not an option. I was 56 at the time. I took CAPTEM chemo, capecitabine and temozolomide, for a year. They shrunk everything. For example, my 8x6cm pnet went to 4x2cm. It didn't block veins anymore. My pancreas and liver started to function properly. After 2 additional years of capecitabine, the cancer has been stable. I am the healthiest that I have been in years. Keep a positive attitude and outlook. It might not always be a cakewalk, but you can manage it. A lot of us here have. We have not only survived, but we now thrive.