The role of Tumor Marker Labs

I can relate to a little of this, Jenchaney -- I am a multifocal SiNET patient and the staging was close to yours when they found 5 tumors in my small intestine in Dec. 2015. Unlike you I have never had any signs of carcinoid syndrome and unlike you my lymph nodes were clear. However, after those 5 tumors were removed my symptoms (extreme fatigue like yours and constant nausea) persisted just as if nothing had been done at all. The local oncologist actually referred me back to the GI specialists AGAIN post-NET diagnosis because she was so convinced there was another diagnosis in the works.

I asked for a referral to a NET specialist (there is none in my very small health provider network) and that NET specialist was equally puzzled but suggested a Gallium-68 scan based on my symptoms. That scan showed diffuse uptake in the pancreas and duodenum but no focalization, meaning no evident tumors OR tumors too small to see. I *also* had skyrocketing pancreastatin levels -- 350-something -- which was the only unusual lab value of the bunch. Chromagranin-A normal, HIAA normal. Just the pancreastatin. To further confuse things, the NET specialist said himself that high blood sugar could result in high pancreastatin levels, and I have been borderline blood sugar for a little while -- not diabetic but in the "pre" range which is controversial. So the NET specialist himself was not sure the pancreastatin levels actually meant anything.

FWIW, the NET specialist recommended putting me on Octreotide to see if my symptoms responded to it. 'If they do,' he said, 'We'll know something." The day after my first shot (Sandostatin LAR, not short-acting because I had allergic responses to the short-acting) ... 2/3 of my symptoms resolved AND when my pancreastatin levels were checked the following month, they had plummeted down to 51 from 350-something. So very clearly, the pancreastatin levels did in fact speak to the NET, not blood sugar levels; also very clearly, there is something going on in there, but something way too small to see.

I offer this as a reason to get a Ga-68 scan. Nobody but the surgeon's ever seen my tumors. But they were making me really, really sick! Do you know if you are a multifocal case? From the medical literature I'm devouring, it seems that 25% of small intestine NETters have multiple tumors; I do not know anything about large intestine NETters.

Information I have seen recently says they do not go by Chromogranin A or use that test anymore

Information I have seen recently says they do not go by Chromogranin A or use that test anymore

I am scheduled for my first Gallium-68 today (another Pancreastatin test came back high and symptoms increasing). Hoping they find actual tumors. If not, my doc still plans to start me on Lanreotide next week. Aetna is being helpful as ever (NOT!) in trying to deny the preauth for the scan since Gallium plus PET scan doesn't make sense to their protocols. This is such a frustrating disease!

I can relate to a little of this, Jenchaney -- I am a multifocal SiNET patient and the staging was close to yours when they found 5 tumors in my small intestine in Dec. 2015. Unlike you I have never had any signs of carcinoid syndrome and unlike you my lymph nodes were clear. However, after those 5 tumors were removed my symptoms (extreme fatigue like yours and constant nausea) persisted just as if nothing had been done at all. The local oncologist actually referred me back to the GI specialists AGAIN post-NET diagnosis because she was so convinced there was another diagnosis in the works.

I asked for a referral to a NET specialist (there is none in my very small health provider network) and that NET specialist was equally puzzled but suggested a Gallium-68 scan based on my symptoms. That scan showed diffuse uptake in the pancreas and duodenum but no focalization, meaning no evident tumors OR tumors too small to see. I *also* had skyrocketing pancreastatin levels -- 350-something -- which was the only unusual lab value of the bunch. Chromagranin-A normal, HIAA normal. Just the pancreastatin. To further confuse things, the NET specialist said himself that high blood sugar could result in high pancreastatin levels, and I have been borderline blood sugar for a little while -- not diabetic but in the "pre" range which is controversial. So the NET specialist himself was not sure the pancreastatin levels actually meant anything.

FWIW, the NET specialist recommended putting me on Octreotide to see if my symptoms responded to it. 'If they do,' he said, 'We'll know something." The day after my first shot (Sandostatin LAR, not short-acting because I had allergic responses to the short-acting) ... 2/3 of my symptoms resolved AND when my pancreastatin levels were checked the following month, they had plummeted down to 51 from 350-something. So very clearly, the pancreastatin levels did in fact speak to the NET, not blood sugar levels; also very clearly, there is something going on in there, but something way too small to see.

I offer this as a reason to get a Ga-68 scan. Nobody but the surgeon's ever seen my tumors. But they were making me really, really sick! Do you know if you are a multifocal case? From the medical literature I'm devouring, it seems that 25% of small intestine NETters have multiple tumors; I do not know anything about large intestine NETters.