imaging not seeing tumors

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imaging not seeing tumors

by dlind48 on Fri Oct 19, 2012 08:46 AM

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I had a CT in May for stomach problems and a 2.5 cm. mass was found next to my mesenteric artery. The radiologist thought it might be carcinoid. My GI doctor referred me to a surgeon who was reluctant to operate right away due to the lesion's proximity to the artery as well as possible wound healing problems I might have due to a connective tissue disorder (Ehlers-Danlos syndrome). He referred me to an oconologist who ran all the usual tests, including an octreoscan. All of my test results were in the high normal range but the octreoscan showed nothing. We decided to go ahead with the surgery to remove the mass. Much to everyone's surprise, the mass turned out to be nothing more than a fatty tumor, but my small intestine was heavily affected with carcinoid which has spread to my mesentery, making it inoperable, and to my liver. The lesions on my liver are small, only 1 -3 mm. but there are many of them on both sides. About a foot of intestine was removed in 2 areas that were almost totally blocked. A large carcinoid liver lesion was also removed. Now that I've had the surgery, my oncologist ordered a PET scan and a consult with an interventional radiologist to start treatment with SIR. The scan showed the primary tumor in my intestine and its spread to the mesentery but none of the liver lesions that were clearly visible during surgery. Consequently, the radiologist will not do any ablation or SIR. My blood work continues to be in the high normal range. Because of how much carcinoid I have, we're thinking I've had it for maybe 10 - 15 years, however I have not had the syndrome as of yet. I was going to try the Sandostatin LR shots, but since my tumors don't seem to have the receptors to attract it, we have decided not to go ahead with them. The lack of receptors also makes the effectiveness of SIR therapy questionable, but I was hoping for at least ablation treatments. My oncologist is contacting colleagues at the Mayo clinic in Phoenix (I live in Tucson) to see if they have any other options, but I am not hopeful.

Has anyone else had this problem with imaging and non-secreting tumors? The doctors want to watch me for symptoms of the syndrome or wait for 6 months to a year and scan and do labs again. I am a total wreck from the anxiety and depression all this has caused. 

RE: imaging not seeing tumors

by LauriG on Thu Oct 25, 2012 11:02 AM

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Hi,

My name is Lauri and I live in Australia. I do have the syndrome but so far no tumours have been located. My syndrome is helped by Sandostatin injections. We also know I have it because my mother had multiple carcinoids found in her small intestine.

I am writing to you because you do not need your tumours to show up on scans for the Sandostatin to be effective. I have had Octreoscan and I have also had 2 Gallium 68 PET scans, and nothing has shown up. And yet the injections make a dramatic difference to my symptoms. But the injections are not just for symptoms. Several studies have shown that Octreotide (Sandostatin is the brand) can cause stabilization of tumour growth, and in some even caused tumours to shrink. It also prevents further cardiac damage from any excess serotonin released for if your tumours are secreting at times you are not being tested (they can secrete sporadically - and they can be secreting even if you do not have any observable syndrome symptoms).

I can fully understand your anxiety and depression, it is such a scary and confusing time. Just know that this is not like normal cancer. It is usually very slow growing, and even when it has spread extensively it can still be managed very well. The statistics they have on the internet regarding life expectancy are no longer relevant because there are so many things they can do. One thing that I found encouraging was the lecture by Dr Pommier at the 2009 NET Conference in Mt Sinai. It is at the following link:

itr8.com /hosted/ccf/mtsinai09/presentation_links.htm

At www.carcinoid.org website you will find a list of carcinoid specialists which would be a good idea to look at - perhaps your oncologist could refer you to one of them, or else consult with them.

There is another online support group called ACOR Carcinoid Cancer Support Group which not only has a section for patients, but also has a blog that doctors can join to seek info from a specialist.

Please don't lose heart and don't feel alone.

You are in my thoughts and prayers, Lauri.

RE: imaging not seeing tumors

by dlind48 on Thu Oct 25, 2012 05:15 PM

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Laura, thanks for getting back to me. I just got an appointment to see a carcinoid specialist in Scottsdale, Arizona on Oct. 31. I already have a long list of questions and I have added this one - since I don't have the syndrome and all my labs are only very marginally elevated everytime I'm tested, how they would they be able to tell if my tumors are spreading or stable and/or shrinking if they haven't show up on any imaging? I had a trans-esosophogeal ultrasound (very unpleasant, to say the least), and my heart is OK. I don't want to have those painful, expensive Sando shots if there is no way to tell if they are effective.

RE: imaging not seeing tumors

by dlind48 on Thu Oct 25, 2012 06:47 PM

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For Lauri in Australia, a footnote to my response to you. My oncologist explains that my tumors do not have the receptors necessary for the octreotide to bind to. I'm hoping there is some other approach is available for people like me instead of sitting around waiting to get sick from the metastatses. At that point, I fear any intervention would be too late to help me. 

RE: imaging not seeing tumors

by msdavis50 on Mon Oct 29, 2012 06:43 PM

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Hello all...My husband went in for a routine colononoscopy after retiring in Dec 2010 and a carcinoid tumor was found in the colon and had matastasized to the liver.  He has had a resection, and chemo did no good for the liver lesions.  However the sir procedure done by one of the best from the NET clinic in Kenner, La has been a success.  The devastation came about in May, 2012, when there was a tumor located in the T-5 Vertebrae.  Emergency surgery had to be done for bone removal and fusion.  He is now paralyzed from the waist down and we are hoping and praying for healing so that he can walk again.  He walked into the ER before the tumor was located with severe back pain and leg weakness....

RE: imaging not seeing tumors

by msdavis50 on Mon Oct 29, 2012 06:45 PM

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There is also the Neuroindocrine Clinic in Kenner, Louisiana that has many advanced treatement for NET patients 

RE: imaging not seeing tumors

by dlind48 on Mon Oct 29, 2012 09:01 PM

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Thank you to all who responded to my message. I am going to the Mayo Clinic in Scottsdale, AZ on Oct. 32 to consult with a carcinoid specialist there. I hope he has some other options for me, but I am not optimistic. From what I can understand, 80% of carcinoids have the receptors and are amenable to treatment, but I can't find out anything about treatment of the remaining 20% of carcinoids that do not have the receptors. Very frustrating and discouraging.

RE: imaging not seeing tumors

by kluesy on Wed Jan 16, 2013 02:01 AM

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Hi dinlyd45 Did they locate your tumor at Mayo? I am in same situation... Carcinoid syndrome without tumor located. Serum serotonin 422, 5hiaa slightly elevated, cga 50 PTS elevated, double neuron specific enolase. Currently taking octreotide subq shots which help the flushing, nausea, tackycardia, hypertension, and broncoconstruction. I think it may be in my lung as I keep having reocurring infiltrates and collapse in my lower left lung. Had ga68 gallium scan in dec that did not light up any tumors but showed the soft tissue density and collapse band in my lower left lung. Just wondering if you had any luck at Mayo?

RE: imaging not seeing tumors

by dlind48 on Wed Jan 16, 2013 04:33 AM

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I'm sorry to hear you are so badly affected by this disease. When I went to Mayo in Scottsdale in October, they did blood work which included a test for pancreastatin, a test that I had never had done before. The upper limit of normal is 88, and mine came back at 207, which was the first time any lab work had shown anything significant. After getting 3 Sandostatin shots, I went for a return visit in December, and my pancreastatin levels had dropped to 188, so I guess I'm moving in the right direction.

Mayo's scanning techniques are far superior to anything I got in Tucson, and some very small lesions did show up in my liver with only an MRI. Their MRI technique was somewhat different from anything I had experienced before and seemed more targeted to my liver. I had surgery in August, when we found out my primary tumor is in my small intestine and is inoperable because it has spread to the mesentery and possibly to my perotineum, as well as to my liver. Although none of these had not shown up on any scans done here in Tucson, they were all highly visible on Mayo's scans, so now we can visually follow them along with the blood work results. I get my shots and pancreastatin levels done every 3 months here in Tucson and will go up to Mayo every 6 months for scans. There is also some concern for the tricuspid valve in my heart as it appears to be thickening, so I have to get a cardiac MRI every few months. It is a new development, so when I go back to Mayo in June, I will ask if they want to do the imaging for that, too, or if I should continue with my cardiologist here in Tucson.

I don't know where you are getting your treatment, but if you can manage to get someplace with some experience in carcinoid, go for it if you can. It could make all the difference. The oncologists in Tucson told me they couldn't do anything for me because of my marginal lab work and negative scans. I was actually told not to even start the Sandostatin shots. The doc I'm seeing at Mayo in Scottsdale is the first one in the entire state of Arizona to specialize in this disease (he comes from Iceland by way of University of Iowa), and I am so grateful he came onboard with them when he did. He has given me a light at the end of the tunnel. Financially, we just can't afford to go out of state, much less out of the country, but travel to Scottsdale is manageable. I just think it's astounding that the University of Arizona in Tucson has not addressed carcinoid in their cutting edge cancer research and treatment.

I hope you can stabilize your condition so you can start to feel better. Has any type of surgery been considered? It seems like there should be some better way to assess your condition. 

My best wishes to you and hopes for an improvement in your condidion.

RE: imaging not seeing tumors

by monica117 on Sat Feb 23, 2013 01:55 AM

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This message is for all of the people who wrote, or will be reading this chain of information.  You can get so much help on this site, as well as doing your own research online which so many of us do.  I also wanted to let you know that if you are on facebook, type in the word carcinoid, and you will find 4 or 5 groups you can become a part of to share information and get answers. 

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