shellyb
Registered: 01/25/09
Posts: 32
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| #11 |
Annie - I got to thinking (and maybe Paul / others has insight on this too) - if your friend didn't "light up" on Octreoscan but did on the Triple CT with G. - I'm just curious if she had any other imaging such as regular CT, MRI, etc? I've had a CT and abdominal Ultrasound (can't have MRI due to a metal implant) and nothing shows up so the last doc (the one who said he's 100% there's no chance I have any cancer) said that with "all that imaging" and nothing showing up, it can't be there............. My new Onco is trying to figure out how we can scan me and when given my insurance but I'm just curious if it's possible to have a NET given all that negative scanning (maybe I'm just hopeful?!)................. Thanks!
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paulpaterson
Registered: 06/16/09
Posts: 38
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| #12 |
morning Shelly, Are you still symtomatic. The tests that annie is talking about is not a common way of imaging. I assume you would have to talk your onco into having this tests done and keep in mind the images dont last long. You would probably have to go off anything you are taking that might hinder the imaging. I know its all a bit weird but hey thats carcinoid for you. She had all the normal tests done, CT/MRI/Gallium 68/ Octreotide etc and unfortunatly nothing much showed. Now next week she is back in surgery with about 4 surgeons to clean up one big mess which seems to have spread through her entire hindgut...
Dont give up hang in there and I am sure things will work out for you
Paul xx
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shellyb
Registered: 01/25/09
Posts: 32
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| #13 |
Interesting - thanks Paul - I am generally not symptomatic these days on the LAR Sando (every 28 days injections) - in fact, the Sando has made a nearly miraculous difference in my life as this time last year, I was nearly incapacitated from working due to diarrhea and flushing - I do have some short-acting and use it for "breakthrough" symptoms that does still happen, especially closer to the end of that 28days / beginning of the next cycle for a day or so..... And, again on Sando LAR now for six months, my labs have generally normalized - I never had elevated 5HIAA or CgA but did have Pancreastatin 4x normal, sig elevated Serotonin and C-Peptide - even on Sando, the Serotonin is still up a little at last check but the others are completely normal - we are redrawing blood this week so we'll see. My Octreoscan back in January was "questionable" - the radiologist said he's never seen uptake so quickly in the rectum (on the 4hr scan) so he felt that was abnormal localization and still heavy on the 24 & 72hr scan but he never ordered the SPECT images with it that I guess some do......... So the one (of three) oncologist says that's just normal uptake, doesn't indicate anything and combined with my negative abdominal CT and Ultrasound means that there is "no cancer" for sure anywhere in there. My new oncologist (and the first one who I can no longer see for insurance reasons which is the NET expert Dr. Tom O'Dorisio in Iowa) says there's no other real physiological reason for my labs to be what they are and a questionable Octreascan means we need to look further. So he was going to do some digging and when I see him again next month with my labwork repeats, he's likely going to temporarily D/C the long-acting and wean me off the Sando so we can get some other imaging like the Gallium-68-DOTA-Octreoscan - but they don't do those anywhere in South Dakota where I live so it will be off to Iowa or Wisconsin after fighting my insurance company......... I just think it's interesting that so many NET/'noid patients on this site have had negative labs or scans yet still shown up later as positive when this one Onc that I saw a few months ago insists there is no way that can happen (he's the one that said "if we can't see a tumor after all this imaging, there isn't a tumor") - so more and more I'm glad that I didn't listen to him and trusted my gut (no pun intended!) because I KNOW in my heart something is significantly wrong in my body and so I'm being persistent despite every cell in my brain screaming "just believe that guy so you can go home and believe you don't have cancer and get on with your life"!!!! Thanks for the info - hope you're doing well Paul - I know you haven't had an easy road. Peace, Shelly
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shellyb
Registered: 01/25/09
Posts: 32
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| #14 |
Oh by the way - I also did have an endoscopy & colonscopy - both of which were read as negative so that's the other "confirmatory factor" that the one oncologist states confirms there's "no way" I have a NET/'noid..........
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annie
Registered: 10/16/09
Posts: 3
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| #15 |
Shelly, I must confess, I am only holding two pieces of this ten thousand piece NET jigsaw puzzle. Having said that, I thought hindgut carcinoids give a negative 5-HIAA result and that CgA corresponded to the metastatic tumor load. Lucy Wiley of http://lucysnoidblog.blogspot.com wonders if she is the only zebra with no bio markers even when, as she put it, she had a NET the size of a breadbox. Also, endoscopy and colonoscopy do not tell you what is happening in the small intestine. I'm not suggesting you rush off and pay for everyscan on earth (well Ga68 maybe!), just saying that no two zebras are the same. That's why Dr Woltering argues that we are zebras with pink dots and purple stripes. You and Jules are looking very similar though. P.S. Did Paul mention he starts his first round of PRRT next week? Keep smiling! Annie
Kay, that is a tough one. If it's PRRT, yes, if it's some horrid chemo stuff, hmmm. Studies show that cancer patients in general, do better when on a treatment trial. This is attributed in part, to their raised emotional wellbeing at knowing they are being closely monitored. Good luck. Sorry I can't help you there. Annie
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