High risk surgery. Is it worth it?

@ant12 Are you seeing a NETs surgeon and a NET team of doctors? So important to do that.

My next thought is about the different skill level of each surgeon. My mom's dog had a huge benign tumor on her chest. Mom's vet said he couldn't remove it due to location, the dog might bleed to death if he nicked the artery. Second opinion with my very skilled vet who said, no problem, she could remove it, but it was totally unnecessary, just unsightly. We left it with no worries.

You need a confident surgeon who has time for you and cares about you. Have you had a second opinion? You stated you are in Australia, so I don't know if any US treatment would be covered. If so, or if you just want a good second opinion and are willing to pay out of pocket if not covered, I would recommend Dr. Eric Liu MD in Denver, Colorado. His entire practice is NETs surgery. He also believes in debulking when possible.
https://www.rockymountaincancercenters.com/physicians/eric-liu
NETs surgery is his life. He has studied it in the US and abroad so he may even be able to recommend a great NETs surgeon in Australia. I've watched so many of his talks about NETs. He's such a confident surgeon and states he always thinks about what is best for the patient today and in the long run. It would be worth watching some of his recorded talks on YouTube. Prayers for you.

@gig666
How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs? I also have lung NETs -- typical carcinoids. Typical are much better than atypical, slower growing, less aggressive.

MIGHT YOU HAVE DIPNECH? I also have DIPNECH which is an even rarer lung condition that causes multiple neuroendocrine tumors that can stay benign or eventually become malignant or turn into lung NETs. I have over 50 scattered across both lungs. When you mentioned you have several tumors including very small ones, that makes me wonder if you also have DIPNECH.

ARE YOU SEEING A NETS SPECIALIST? My pulmonologist and breast oncologist knew little about either so I'm seeing a NETs multidisciplinary team at UCLA. There are many NETs teams around the country. You definitely need one since lung NETs is not treated like your typical lung cancer.

SLOW GROWING - NO SURGERY: My tumors were first observed in 2008, but are very slow growing. That was my first even chest CT. Tumors took 10 years to double in size. 12 years before they were diagnosed. Have probably had them 30+ years based on history of symptoms. I've only had one tumor destroyed so far using non-surgical microwave ablation and it was successful. It was 2.6 cm. The interventional radiologist told me we will do the same to any others that reach 2 cm as they are more likely to metastasize. I will never have any portion of my lung(s) removed (yay!) since tumors are in every lobe.

OCTREOTIDE INJECTIONS: I have also been taking octreotide injections that have been a miracle taking away a chronic cough, constant clear mucus and shortness of breath. It was annoying to me and everyone else. Octreotide also slows growth even more. I still have some SOB, but much improved. I coughed like I had bronchitis for 30 years before that. That is another sign of DIPNECH. Typically diagnosed in middle-aged women who have multiple lung nodules, chronic coughing and SOB. Only a couple hundred documented cases of DIPNECH, but likely underdiagnosed because doctors, even radiologists, are unfamiliar.

Don't worry about the "ground glass opacities" description you've heard. That's just describes a visual appearance on the images as a diagnostic tool for radiologists. There is no glass or anything sharp in your lungs.

Hope this is helpful. Prayers for you.

@ant12
One more thing, lanreotide/octreotide injections can really help with carcinoid syndrome -- the flushing, diarrhea, etc. Are you taking either of those? Has anyone suggested it? Your symptoms can be so miserable and make a daily social life or even going to work so challenging. I take octreotide for my lung NETs and it has helped my respiratory symptoms so much. Seems like people with pancreatic NETs or other abdominal NETs seem to take lanreotide in most of the comments I've read. Those meds help slow tumor growth as well. I really hope you find some solutions soon.

Sorry l have been sick, Yes it was the scan we all were talking about! The nodules one in each lung are very smalk. The base ones surrounding the bottom line no size change. No uptake of injection fluid in my body. Except for finding one egg size lymph node under my left armpit, l have had forever.
My biggest problem is my GI Bloating, dirreaha, spasms, it did show a moderate activity with my diverticulitis. After 5 weeks begging for antibiotics that l used back in September, my Rectal surgeon stepped in and got me the medications. I see hi. Back 5/2 to discuss removal of this chronic section in my Sigmund. Not to allow future possibility of future cancer, p!is to given me a better quality of life. No NETS. Medics right now.

Hi gig666....with my diverticulitis flares it puts pressure on my bladder nerve. WHICH colon &bladder share. That is a double edged sword, spasm s in abdomen, with bloating of upper stomach, putting my bladder not working!!!!
I see my Rectal surgeon beginning of April l wil! Run all this by him!!!
I cannot believe my Birthday is 3/18 and l have been dealing with a spastic colo , diverticulitis and a spinal disease seen on the scan since l was 27! They now believe me. Losing 24 pounds in 5 weeks, "oh, you are dieting!". Sorry folks, those bastards. I also, enjoy my flushings, red mark on lip, l New l had NETS, presented it to them tied up in a pretty. bow. Their response, "roll the dice 3/594 years! If they grow, we can take them out!

My oncologist has prescribed lanreotide but I haven’t started as my surgeon suggested I wait for surgeon to determine if he can remove tumour.
I have elevated seratonin but not chromogranin so they dont think I have the syndrome.
I know what the symptoms are and have most, but don’t suffer from hot flushes.
My blood pressure went high last year after a hand operation that I believe triggered the syndrome.
I’ve been away this week diving the last 4 days and the fasting has all but eliminated my diarrhoea.
I feel rather well at the moment.

Yes l have Nerocarcinoid, cancer! NETS. My breathing is labored, but l am going to do yoga for breathing, not so great for my arthritis, good laugh getting off the floor. Eat small meals/snacks... I am bringing a lawsuit against UMASS. G.I. Clinic!!! My.G.I. Surgeon not part of it, gave me information which has me ready. If my pulmonologist group doesn't watch out with talking on a grey line, versus a white line of truth. I will live to see it till the end. Donate my money to Massachusetts ASPCA!

Given how “Rare” Nets are there are no surgeons here who are specialists.
I have an Oncologist who is a professor Net specialist.
My surgeon isa GI specialist and the new one referred to me is a pancreatic specialist who deals in cancerous growths.
I wish I could afford to travel to the States but in reality I can’t.
I appreciate your input and will watch that video for information.

Update
Booked in for operation on the 22/03/24
Open surgery to remove tumour lodged between superior mesmeric artery and vein.
I have a very experienced surgeon who specialises in pancreatic cancers who will try to remove the golf ball sized net
Hope I’ll be able to update this after.

praying that all goes well.