imaging not seeing tumors

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RE: imaging not seeing tumors

by kelly97 on Sun Feb 24, 2013 11:56 PM

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My mom had carcinoid syndrome and none of her tumors ever showed up on any scans - ct scan, octreoscan, etc. They only found the tumors when they opened her up for an unrelated surgery. She did have all of the carcinoid syndrome symptoms all along.  Her 5HIAA was slightly elevated as well as her chromogranin A (not 100% sure on this one).  They kept telling her that she didn't have it.

Her symptoms started in 1997 and she passed in 2005 from it at age 51.  I have the same issues & so does my brother. Massive weight loss & flushing. Like her, our 5HIAA are both slightly elevated, our chromagranin A was slightly elevated. But on a re-test of our chromagranin A, we were both in the normal range. 

My octreoscan was negative, so my oncologist won't start the shots, since, if I do have the tumors, they don't have those type of receptors. My PET scan was negative.  My ct scan shows that I have mutiple reactive lymph nodes all over my body (& more than I should have) & stranding in my mesentery, along with growing hypointensities on my liver. The oncologist says since my labs are fairly normal & nothing on scans, she doesn't think I have it.

I also had had upper & lower GIs that found no tumors.

It is extremely frustrating. 

RE: imaging not seeing tumors

by dlind48 on Mon Feb 25, 2013 04:16 PM

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I understand your frustration. My tumors only showed up when they did surgery for what we thought was a carcinoid next to my mesentery artery, but it turned out to be only a fatty tumor. I went in thinking they would remove the culprit and I would be good to go. Instead, I got the news that I have inoperable metastatic carcinoid. I never had the syndrome and none of my labs or scans were showing anything, in spite of metastases from my small intestine to my mesentery, perotineum, and liver. My oncologist here in Tucson was professional enough to admit that my case had him scratching his head, so sent me to the Mayo Clinic in Scottsdale, AZ, and for some reason, when they did an MRI, everything clearly showed up. They did the study with IV contrast only, and did not use any barium. I found their images to be far superior to any done in Tucson. They also ran a pancreastatin blood test on me, and it has turned out to be the only one that has shown a significant elevation, so that is the one we are using to track the effectiveness of the octreotide injections. The normal range is 88. My first test in October was 188 and the test in December was 177, so it looks like my levels may be going down. My only problem now is that I am due to be tested again in March, but the lab I have to use in Tucson apparently doesn't run this test. I am having my local doctor intervene for me to see if he can get some action so I don't have to go all the way back up to Scottsdale just to have a blood test. If my levels continue to go down, I will continue the Sandostatin shots. If not, then I will have to revisit whether getting the shots is of any value.

I alternate seeing my doctor at the Mayo Clinic, who is from Iceland and is a specialist in carcinoid, every 6 months with visits to my local doc for the monthly Sandostatin shots and and blood work. He told me that all carcinoids have receptors, but some are less apparent than others, so he wants me to stay on the Sandostatin until we have clear evidence that it is not working. Having negative scans is not a reason to be denied treatment. Keep being proactive and push for getting on the Sandostatin. Maybe a pancreastatin test would show something for you like it did for me. Keep an eye on your heart, too. I had a cardiac MRI in January that showed some involvement starting to develop in my tricuspid valve.

RE: imaging not seeing tumors

by glaspar on Fri Mar 01, 2013 05:25 AM

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I do not have syndrom but octriotide scan showed nothing but my blood work is very high 152. They say it is because I take nexium once a day. Went to OSHU to liver carcinoid specialist and he told me if my  numbers became as high as 300 to come see him and there is an advanced scan he can run. Also told me if Iwere to get it back it would most likely land in liver or colon. I had three feet of intestine taken out almost 3 yrs ago and 2 nodes unaccounted for or bad??? I do not know technical term. I am bnot afraid but cautious. God bless you and I hope all goes well for all of you.

RE: imaging not seeing tumors

by glaspar on Fri Mar 01, 2013 05:27 AM

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also clinic in Ca. Cedar Sinai has neuroendocrine carcinoid team.

RE: imaging not seeing tumors

by kelly97 on Tue Apr 02, 2013 10:45 PM

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I'm set to get another ct scan in about a week and a half. Then on the same day afterwards, I'll have labs and then meet with my oncologist (unfortunately, I think for the last time if she doesn't find anything on the ct scan).

Did you have a special PET scan like a gallium68 and/or did they use glucose or 5-HTP for the uptake?

Your story really scares me because I do have all of these carcinoid symptoms.  And my ct scans keep coming back saying that I have reactive lymph nodes & stranding in my mesentery.  Plus, I have more lymph nodes than I should have in my mesentery, retroperitoneal, aortocaval, para-aortic, & iliac chain lymph nodes.

Thank you, I know to watch my heart - my mom had ended up with carcinoid heart disease (which may have led/contributed to her death). I do see a cardiologist, but never had a cardiac MRI. I have tachycardia, shortness of breath, & peripheral edema.  And I just read in her notes that I have jugular vein distention along with a murmur along the left sternal border - which I've just read is indicative of carcinoid heart disease. 

I need new doctors! 

I hope things are going OK for you right now.

-Kelly

RE: imaging not seeing tumors

by dlind48 on Wed Apr 03, 2013 01:14 PM

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I did have a PET scan (not with Gallium) that showed nothing. My blood work was coming in only marginally elevated until we ran the pancreastatin test. I was mistaken when I said my initial level was 177 - it was 207 in Oct. In Dec. it went down to 177, and my most recent test 3 weeks ago showed it is down to 85, which is in the normal range. This seems to indicate that the Sandostatin shots are doing their job and my disease has stabilized! If anything at all is showing up on your scans and/or blood work, I think your doctor should be investigating it more aggressively than it appears. Have you been on Sandostatin? My first oncologist said, "All your scans are negative. We don't worry unless your labs are up in the thousands, so we see no reason to treat you at this time. See you in 6 months." I said, "Bulls**t!" and promptly changed doctors. You have a lot going on and seem to have more than enough evidence to warrant changing doctors, or at least getting a second opinion. I hope you can resolve this and get the treatment you need and deserve.

RE: imaging not seeing tumors

by kelly97 on Sun Apr 07, 2013 02:30 AM

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No, I'm not on anything at all.  Never even tried anything to see if it would work. She said she didn't really didn't want me to try anything, because she didn't think that it would work.

I had a pulmonary function test on Thurs ordered by my rheumatologist.  It shows I'm borderline normal/low for my blowing out capacity (80) and shows narrowing of my airway to only 65% of what was expected. I've looked these up and these also could be signs of carcinoid tumors.

I think I'm going to put all of this stuff together to bring it to my oncologist on Fri when I see her. If she still think no for carcinoid, I'm going somewhere else. May see if I can go to Louisiana.

  

- Search here -

by harryro on Sun Apr 07, 2013 11:22 AM

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These tumors can be slowly growing. The ordinary PET scan uses radioactive sugar on the principle that tumors use sugar to grow. Since these tumors are slowly growly, they may not appear on this scan. This is a good thing. Even if they can be seen with other tests (eg. MRI or CT) it suggests that you tumors are "indolent" and not likely to kill you quickly.

It sounds like you might need a Gallium DOTATATE or DOTATOC PET scan. This labels the octreotide receptor that is present on NET tumors. It is far better than any other scan ofr this purpose. Unfortunately, it is not widely available in the USA but perhaps you should find a centre that is doing them, because it might make a big difference.

RE: imaging not seeing tumors

by Retiredroxy on Fri Aug 02, 2013 04:32 AM

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I know this is an older post but i would like to respond. I too had a carcinoid tumor that showed neg on reg cat scans. Only when it grew and was biopsied did it prove to be carcinoid. Adter having my right middle lobe removed and some lymph nodes i did some more research. My lymphnodes did not show up on scans even though they were positive so i took my saving and went to Sweden where they performed a cat scan using C5HTP as the tracer. I showed another positive tumor. I went home and repeated the same surgery removing the tumor as well as more positive lymph nodes. If my dr had this info i would have only had one surgery ! The question two of my specialists have asked, Why dont we have this test in the US? I want to know how to get it here. My doctors say they are trying but i dont see any results! They have learned to administer this test at vanderbilt. And i was told we have the facilities to do it. The FDA hasnt approved any testimg of it.

RE: imaging not seeing tumors

by kluesy on Fri Aug 02, 2013 08:35 PM

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I agree..... wish we had this test in the US.  Just had the plain FGD Pet which did not show tumor, but I have raging carcinoid syndrome with VERY positive labs....CGA, serum serotonin, 5hiaa and neuron specific enolase.  Had the GA 68 scan, CT without contrast (allergic) and still can't find it.  I am currently taking sub q octreotide which has brought the lab markers down, but I am physically getting worse.  Getting hard to walk, very weak, horrible muscle pain, swollen abdomen, nausea and run to the rroom when shots wear off, chest pain and shortness of breath.  I have a very compromized immune system, Low killer T cells with no explaination....so surgery is probably out of the question anyway.  Just had a granuloma removed from upper maxilla(upper teeth-sinus area) and still having infection from that...

It does really bother me that they can't find the tumor as its presence is very much made apparent by my elevated labs.....and the syndrome.

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