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jenchaney727
@jenchaney727

Posts: 13
Joined: May 04, 2016

The role of Tumor Marker Labs

Posted by @jenchaney727, Jan 27, 2017

It’s been 5 years since my Carcinoid was removed from my colon (Ilium). At that time, they found it had also spread to 2 of the 19 lymph nodes. My only symptoms then was severe watery diarrhea and occasional flushing. About 9 months ago, I started having frequent flushing and some diarrhea. The flushing has gotten very bad (multiple episodes a day) and my fatigue is severe last 3 months. All of my scans are normal. Tumor markers go up a little, but had been still within normal limits (other than occasional very minor high result for Chromogranin-A due to GERD PPI meds) until this last draw. This time, my Chromogranin-A was very high at 1410 and my Pancreastatin was high at 155. My local oncologist said could be an anomaly with the lab, but it seems too odd that 2 are so high, especially with my symptoms. My other oncologist said that often these tumor markers show up way before anything reveals itself on scans, so it is a wait and see game. Has anyone else experienced this? It’s so emotionally draining. Any recommendations on how to get through this without over reacting would be much appreciated. My tumor was classified as “Well-differentiated” with pathologic stage of: T2 N1 M0. it surprised all of my docs that it spread even though low grad and well-differentiated, which is why I worry something is being missed.

REPLY

Hello @jenchaney727, I can understand your concern. Let’s check in with the others in our NET group and see if they have had an experience like this. @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor, could anyone comment on Jen’s situation?

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.

@wordnoid

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.

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@wordnoid , thank you SO much! This is extremely helpful! I’ve been reading on the Gallium-68 and do think I will push for it. Was also wondering if they ever do trial of the meds to see if it helps, so glad to hear some do and that it helped you. I will be following up asap!

@wordnoid Thanks for that reply. Your information was right-on! Does anyone else in our group have any ideas for @jenchaney727 based on your experiences? Let’s hear from you @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @dzerfas @lorettanebraska @trouble and @upblueeyes @ahtaylor. As we share our experiences and knowledge we grow together! Thanks for all of your input and support for each other, you are all great! Teresa

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!

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

@gaylejean

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

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I would be curious to see see the information saying CG-A is no longer used. My wife just had one @ Mayo.

@gaylejean

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

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@tomewilson Hi Tom: I have not heard that this test is no longer use. I still have this blood test each year as well, however, I know that there is a tendency for false positives. My blood levels of CgA are always extremely high, so my doctor also does a 24 urine (5HIAA) and a Serotonin blood test as well. Since they are in the normal range he does not concern himself with the high CgA. I was told that a high CgA could result from liver/kidney/heart problems or the use of proton pump inhibitor meds not just the NET issues. My blood work is always sent to Mayo for testing even though I live in Michigan. Here is a website that explains the false positive phenomena of CgA, http://www.carcinoid.com/health-care-professional/carcinoid-biochemical-testing.jsp and here is a website that explains the test itself https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/ I’d like to know what others have to say about this as well. Teresa

@jenchaney727

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!

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@jenchaney727 Hi Jen: I was just reviewing some of the posts in the NET group and noticed that you were scheduled for a Gallium-68 in March. Would you care to share anything about that experience? I hope that all is going well for you and with your Lanreotide treatment. Best wishes. Teresa

@wordnoid

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.

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Hello @wordnoid

I’ve been thinking about you. How are you doing?

So relieved to find people with this frustrating disease process. I was beginning to think I make up all of my s/s. I had R colectomy removing a 5cm carcinoid in my illeocecal valve. Nothing in my lymph nodes, but now symptomatic with watery diarrhea, racing heart at times and flushing once more, along with generalized abdominal pain, probably associated with my Portal Vein Thrombosis I developed 4 weeks post o.p. after my Colectomy. I have since developed Varices steming from this clot and has reeked havoc on my body. So I get banded every 6 weeks to 6 months per EGD. Now they feel it’s affecting my small and large intestines causing bleeds. I’m just here to be informed and what others are going through and maybe help one another feel understood. Thanks to you all and hang in there! It doesn’t help that I’m a RN who tries to figure everything out because the doctors really don’t have any answers. The Oncologist tells me it’s so slow growing don’t worry about it, GI tells me I dont know why you have diarrhea, and My liver Dr. (because of my blood clot, not that I have anything wrong with my liver) tells me go see GI and Oncologist and they have nothing for me.

@pbrown

So relieved to find people with this frustrating disease process. I was beginning to think I make up all of my s/s. I had R colectomy removing a 5cm carcinoid in my illeocecal valve. Nothing in my lymph nodes, but now symptomatic with watery diarrhea, racing heart at times and flushing once more, along with generalized abdominal pain, probably associated with my Portal Vein Thrombosis I developed 4 weeks post o.p. after my Colectomy. I have since developed Varices steming from this clot and has reeked havoc on my body. So I get banded every 6 weeks to 6 months per EGD. Now they feel it’s affecting my small and large intestines causing bleeds. I’m just here to be informed and what others are going through and maybe help one another feel understood. Thanks to you all and hang in there! It doesn’t help that I’m a RN who tries to figure everything out because the doctors really don’t have any answers. The Oncologist tells me it’s so slow growing don’t worry about it, GI tells me I dont know why you have diarrhea, and My liver Dr. (because of my blood clot, not that I have anything wrong with my liver) tells me go see GI and Oncologist and they have nothing for me.

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@pbrown I see that this is your first post, welcome to Mayo Connect.

While I’m sorry to hear that you are dealing with the frustration of a carcinoid in the ileocecal valve as well as the other symptoms. Anything to do with NETs/carcinoids is very frustrating, isn’t it?

Probably the most important thing you can do for yourself is to seek out a specialist for NETs. Not every location has specialists in this rare type of cancer. Here is a link to the Carcinoid Foundation https://www.carcinoid.org/. If you go to their website you will see that they list experts in the field. Even if you have to travel to see one, it’s a good idea and allows you some good information that can be taken back to your GI and/or oncologist.

Are you close to a Mayo Clinic facility (Minnesota, Florida and Arizona)? If you would like to seek a second opinion at Mayo Clinic, you can submit an appointment request here: http://mayocl.in/1mtmR63 Often, after the first consultation, Mayo experts can work with a local provider to continued care.

Also there is a Mayo Clinic Care Network. Read more about the network and facilities here: https://www.mayoclinic.org/about-mayo-clinic/care-network. These are other hospital systems that are part of the Network and can consult with Mayo doctors.

Being an RN gives you the tools you need – so stick with the process. Probably others in our group will talk with you about the flushing, diarrhea as sounding like symptoms of carcinoid syndrome. If you are comfortable sharing more, what types of blood work do you have on a regular basis?

I’d like to introduce you to some of our members who may be willing to share experiences with you, @tresjur, @tomewilson, @jenchaney727 and Mike, @meppard (I think that Mike is also an RN).

We look forward to getting to know you and supporting you with this rare disorder.

Will you keep in touch with us and let us know how you are doing?

Teresa

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