I saw the surgeon. More confused than ever.

Posted by carver1164 @carver1164, Sep 3, 2025

Hi everyone.
After a very long month, I finally saw a surgeon for my 8mm si NETS. I am symptomatic. I was totally expecting to get a surgery booked to only realize, the surgeon wants another PETscan. I'm not sure why, since my last one was negative. The tumor was found by CT enterography. Anyway, she is also putting me on octreotide for a month and will reassess my symptoms.
I'm confused about the PET scan, unless its for mapping. But if it doesn't show up like the last time.....and doesnt octreotide work right away? Why a month...I'm a bit frustrated.
Thanks for hearing me out

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

carver1164 | @carver1164 | Sep 9, 2025

In reply to @tomrennie "That sounds like a good plan. How do you feel about it?" + (show)

I feel ok...I have let go and will do whatever the dr. wants. I'm actually just happy and grateful to have a plan....thank you. I'm getting the shot on Monday.
I'm nervous about the diet restrictions. Doc said NO FAT...no more chicken wings I guess...

Turkey, Volunteer Mentor | @tomrennie | Sep 10, 2025

In reply to @carver1164 "I feel ok...I have let go and will do whatever the dr. wants. I'm actually just..." + (show)

It is nice to have a plan. Good luck with the shot. You will learn to adapt to the diet. Hopefully, the plan works and the rigid restrictions are short term. I can relate on the wings especially now that football season has started. But I got so sick that I didn't like food, even wings, for a long time. You don't want that. So take care of things now and imagine how good those wings will taste later. Maybe washed down with a cold beer haha.

ricki8 | @ricki8 | Feb 2 11:30am

In reply to @tomrennie "Please keep us posted on your progress. I am excited for you with the trial. How..." + (show)

@tomrennie
Hi Tom, as of today, the plan for the Alpha PRRT to come to Vancouver has been postponed due to lack of funding. It may not be over yet, just waiting for an update. We have a large Cancer Research Centre here, so I would hope to see the latest. I had mentioned that I believe the treatment Lenvima had caused my massive heart attack (flatlined) and I was quickly switched to Enverolimus (which has very different symptoms (for me). So far, I am much happier.
We are all test subjects for our individuality.

Turkey, Volunteer Mentor | @tomrennie | Feb 4 10:55am

In reply to @ricki8 "@tomrennie Hi Tom, as of today, the plan for the Alpha PRRT to come to Vancouver..." + (show)

@ricki8 Sorry to hear that. Hopefully, it will be available in Vancouver sooner rather than later. I agree that we are all test subjects for our own individuality. Each treatment is unique to each body.

amongst | @amongst | Feb 5 9:09am

My husband was diagnosed with NETS in December. The tumor they spotted is on his liver, but it’s a secondary tumor.He’s had 2 CT scans, 2 PET scans & an MRI. The last CT & PET were with a contrast that was specifically to highlight NETS to look for the primary tumor. It seems like a lot, but he’d rather they scan to try to find the primary than explore during surgery. But unfortunately, they couldn’t find it in the scans, so they’ll look for the primary when he has his surgery in 2 weeks.

Turkey, Volunteer Mentor | @tomrennie | Feb 5 9:38am

In reply to @amongst "My husband was diagnosed with NETS in December. The tumor they spotted is on his liver,..." + (show)

@amongst Do you know what contrast was used? What surgery will he have?

amongst | @amongst | Feb 5 11:16am

In reply to @tomrennie "@amongst Do you know what contrast was used? What surgery will he have?" + (show)

@tomrennie
The PET scan was with dotatate & the CT was with contrast- triple phase.
He will have a liver resection/hepatectomy total left lobectomy. His tumor is 3cm. They will also remove surrounding lymph nodes & look for primary tumor.

Turkey, Volunteer Mentor | @tomrennie | Feb 5 3:42pm

In reply to @amongst "@tomrennie The PET scan was with dotatate & the CT was with contrast- triple phase. He..." + (show)

@amongst I still get the gallium dotatate PET to monitor my NETs. My primary is in my pancreas, but my liver has a lot of lesions with the biggest being over 4cm. I understand the concern. Does your oncologist and surgeon specialize in NETs?

amongst | @amongst | Feb 5 5:48pm

In reply to @tomrennie "@amongst I still get the gallium dotatate PET to monitor my NETs. My primary is in..." + (show)

@tomrennie We live near Atlanta GA & our surgeon is a specialist at Winship Cancer Institute at Emory University Hospital.
I agree that the waiting is really hard! If you feel that your oncologist is not giving you adequate care, perhaps you should seek a second opinion?

Turkey, Volunteer Mentor | @tomrennie | Feb 6 11:29am

In reply to @amongst "@tomrennie We live near Atlanta GA & our surgeon is a specialist at Winship Cancer Institute..." + (show)

@amongst That's great that you have a specialist, because treatment with an unknown primary adds an additional challenge. Please keep us posted on how everything goes? I am fortunate to have great care at Mayo Phoenix. I have also been living with a 4cm PNET that has spread to my bones as well as my liver for the past 3.5 years. Without the expertise in treating NETs, I wouldn't be alive.