1. < Neuroendocrine Tumors (NETs)
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I saw the surgeon. More confused than ever.

Posted by carver1164 @carver1164, Sep 3 2:23pm

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

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sophiarose | @sophiarose | Sep 5 9:40pm
In reply to @carver1164 "Hi...I had the gallium PET. It was negative. But a CT enterography found it... I'm not..." + (show)
Profile picture for carver1164 @carver1164

Hi...I had the gallium PET. It was negative. But a CT enterography found it...
I'm not sure what the future PET is. I see a different endocrinologist (my referring doctor) on Monday. I assume for the octreotide...not sure.
I will ask him all the questions

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Don’t know if you know
However If you get Octreotide on Monday you have to wait atleast 3 weeks to get the PET scan
I do my PET scans a day or two before my octreotide injection
Hope all goes well

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carver1164 | @carver1164 | Sep 6 1:11pm
In reply to @sophiarose "Don’t know if you know However If you get Octreotide on Monday you have to wait..." + (show)
Profile picture for sophiarose @sophiarose

Don’t know if you know
However If you get Octreotide on Monday you have to wait atleast 3 weeks to get the PET scan
I do my PET scans a day or two before my octreotide injection
Hope all goes well

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Oh..really? Why is that?

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carver1164 | @carver1164 | Sep 6 1:12pm
In reply to @stevestenberg31 "All the above comments are great. However, I would add that maybe it has to do..." + (show)
Profile picture for stevestenberg31 @stevestenberg31

All the above comments are great. However, I would add that maybe it has to do with your insurance coverage. I had a 2.5cm NET in my SI with similar mets to you. After 3 months of Lanreotide and biweekly extreme bloating and vomiting I went to the ER where a CT scan with dye revealed a full blockage leading to an emergency operation removing the NET, 8 lymph nodes, GB, 10in of SI. You may have a partial blockage at times(things move around) causing your pain. You need a NET Specialist that knows the questions to ask you and how to work with your insurance. I don't think your specific doctor can coach you on symptoms. Ie insurance regulations etc. in your situation a second opinion could help. I got a second opinion for a neighbor oncologist and it frankly saved my life. 2 yrs, 4months later on monthly Somatuline Depot shots and I feel great and I'm very active. I wish you the best.🙏

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Thanks for your reply. I live in Canada. We dont do medical insurance unless we travel...

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sophiarose | @sophiarose | Sep 6 2:35pm
In reply to @carver1164 "Oh..really? Why is that?" + (show)
Profile picture for carver1164 @carver1164

Oh..really? Why is that?

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The octreotide interferes with the radioactive tracer given when doing a pet scan
So the ideal time is to get the injection right after the PET scan

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carver1164 | @carver1164 | Sep 6 3:48pm

Hi, interesting. What is a octreotide scan then? I read that it helps find them...well, I'll know more on Monday. I'll ask my Dr about that

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jlsgt | @jlsgt | Sep 6 8:08pm
In reply to @carver1164 "Hi, interesting. What is a octreotide scan then? I read that it helps find them...well, I'll..." + (show)
Profile picture for carver1164 @carver1164

Hi, interesting. What is a octreotide scan then? I read that it helps find them...well, I'll know more on Monday. I'll ask my Dr about that

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I believe that Octreotide scan is older and has been replaced by PET scan these days. PET is a superior technology as I understand it.

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ricki8 | @ricki8 | Sep 7 11:06am

'Being your own advocate,' or have someone close help out. This type of cancer is so non-specific and our bodies can react differently to others, so question, question and read up on the latest. Good luck!

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ricki8 | @ricki8 | Sep 7 11:17am

2 months ago I had a massive heart attack (flatlined) and the suspect is my NETs treatment of Lenvima (of which I immediately stopped). Now set to go on Everolimus and scheduled for a Clinical Trial of the new Alpha PRRT (which is expected to be far superior to the Beta PRRT). The Cardiologist who put a stent in my right artery stated on the notes that I had extreme pain in my heart - NOPE! I felt nothing in my heart, but the rest of me was creating havoc. I worked hard to get them to correct the notes (of which they didn't want to change) so other surgeons wouldn't deal with me in the wrong way. QUESTION, QUESTION, QUESTION and insist on getting things right!

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lindabees | @lindabees | Sep 7 11:49am

There are different kinds of pet scans. There is one that is specific for nets called a gallium 68. It identifies net tumors with sstr receptors. Is this the type of pet scan you are scheduled to receive? If they are talking about an octreotide scan, that is old technology and not used much anymore since the gallium 68 was developed.

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Turkey, Volunteer Mentor | @tomrennie | Sep 7 7:29pm
In reply to @ricki8 "2 months ago I had a massive heart attack (flatlined) and the suspect is my NETs..." + (show)
Profile picture for ricki8 @ricki8

2 months ago I had a massive heart attack (flatlined) and the suspect is my NETs treatment of Lenvima (of which I immediately stopped). Now set to go on Everolimus and scheduled for a Clinical Trial of the new Alpha PRRT (which is expected to be far superior to the Beta PRRT). The Cardiologist who put a stent in my right artery stated on the notes that I had extreme pain in my heart - NOPE! I felt nothing in my heart, but the rest of me was creating havoc. I worked hard to get them to correct the notes (of which they didn't want to change) so other surgeons wouldn't deal with me in the wrong way. QUESTION, QUESTION, QUESTION and insist on getting things right!

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How was it determined that the Lenvima caused the heart attack? I never heard of that before. Thank you.

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