High risk surgery. Is it worth it?

What is the difference with Atypical Nets. And typical?
This is gig666/ have they say just I. have carcinod , nodules. In lo botttom lower lobes. I went back after my Bronchoscopy the can shower so many tiny chips which referred as baby nets. I go tomorrow for the Pet scan you are using g at UMASS, Worcester to see if it is outside of my lungs . I have had suffered for 10 months of NETs syndrome, flushing, severe stomach pains, and upper abdomen bloating very painful. It concerns me how my lungs !lol like shattered pieces of glass and my lungs have a tightness. Also, my blood l am making to much RBC! That I oncologist thinks it different from my lungs. Help

It sounds like you’ve come a long way! Has there been any discussion of using captem to try to shrink that tumor hopefully to a point that it is easier to remove?

It hasn’t ever been mentioned by my oncologist
It seems treatment here in Australia is very conservative but I will ask and research that. Thanks

From what I’ve read Captem works best for tumours that are rapidly growing
Mine are very slow growing, which is why chemo doesn’t work for these tumours

Chemo worked for me with my pnet. I was on CAPTEM for 13 months and now just capecitabine for the last 5. My primary went from 8cm x 6cm down to 3cm x 2cm. The innumerable lesions on my liver are mostly gone. I just had my scan on March 6th that showed no growth on a smaller dose of capecitabine for 5 months. My ki-67 is 8%. We will stay the course with capecitabine until my next scan in 4 months. I trusted my Mayo doctors, and did what I was told. It worked.

Thanks
I’m pleased that it is effective
Was your p net not operable ?

Not operable and I am glad. I don't want surgery unless I have to.

just facts here and you will have to decide for yourself--- and this was ten years ago--and by the way I am a 21 year survivor and am age 77 now---
My oncologist at Barnes-Jewish in St. Louis suggested I get the two small tumors in my liver removed and sent me to a surgeon for consult and to see what he thought. He explained to me that where they were located were such that if he did it, it would be high risk surgery and mentioned as he described it to me about needing to do things with my aorta. He thought that since at the time it wasn't affecting my life at all at the present time, that he didn't advise surgery. I went with his opinion as I have a great trust for surgeons with skill that don't leap to surgery. A year later I had to have surgery to remove ones with a bit of intestine in lymph nodes because of blockage, work done by this same surgeon for which he described that surgery as a mere plumbing problem. AS for the liver ones, they are still there but haven't grown. With carcinoid surgery, different areas have different risks and I avoid high risk unless I know I will die for sure very soon without it. may I suggest limiting your eating in diet, being pretty much a vegetarian, don't eat out, especially fast foods. I have the tumors in three areas but they just lay there as if dormant and haven't spread. Besides this semi- fasting diet I get octreotide every four weeks. One never knows what works, if anything, but I do believe in this semi-fasting etc.. and the octreotide. Maybe I am just lucky or blessed. But I don't like the idea of high risk surgery anymore than my surgeon did. I figure if he is saying that, it is probably more risky than I can imagine. But it is your life and your call. I wish I could be more help.

I have had nodules in has of lu mgs 6+ years, scanned for 4 years, then said no need for more, nodules were stable. Through abdominal CAT scan, they noticed one in each lung grew, not alot! But l was suffering from NETS for 10 months before, worse being my gout, large colon major diverticulitis, 10 polpys. Flushing is worse, breathing l gasp for air. Excruciating colon rectal pain, which my G.I. I contacted 21 days ago, everyone is waiting l guess for this Pet scan. Which got cancelled Friday, rescheduled for Monday.
Help, head me in right direction, My oncologist watching my BED numbers creep up! Last August l had 4 iron count, had 8 infusions and my RBC. numbers started climbing, my iron is steady.

No conversations!! Maybe after this PET. Scan. The two larger nodules are not that big. The surprise was all the tiny Nets floating around.