Exploratory Surgery??

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Exploratory Surgery??

by kelly97 on Mon Apr 29, 2013 11:30 PM

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Hi everyone, Anyone want to comment about getting exploratory surgery to find my elusive carcinoid tumors? Has anyone had this surgery or know of anyone else who has had it? If I have it, it will be orthoscopic - with a few holes put into my abdomen to look around.

Also, wondering if anyone has had the gallium-68 scan and did it show tumors that didn't show on the other scans?

Thanks so much!

Kelly

RE: Exploratory Surgery??

by ClayBear on Tue Apr 30, 2013 12:29 PM

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My Oscan revealed a possible focal lesion in the spleen, and then later said it could be nothing.  So my GI ordered an MRI which came back clean and he couldn't answer my question about the tumor being too small to show up on the MRI.  He gauffed at the idea of exploring the spleen.  I work for a medical malpractice attorney too who said I need a general surgeon to explore the spleen to be safe, but he won't do it.  He's now telling me to take more fiber and come back in 4 months. :-/ 

I think if someone is offering exploratory surgery to you, then you should do it.  Laproscopic surgery is an "easy" one and they could find something.  It's worth a couple days in bed with lots of movies and ice cream!!!!

RE: Exploratory Surgery??

by LauriG on Sat May 18, 2013 11:53 AM

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Hi Kelly,

Crazy as it may sound I would love exploratory surgery! I feel like, surely with all of my symptoms and the fact I can say where I am feeling pain they would have to be able to see it if they went in there! But no one is willing to consider that option yet.

I have been having the gallium-68 scan every year for the past 3 years and it has not found anything yet. However it has shown something in my Mum.

Another Australian with carcinoid had the gallium-68 scan which showed up about 3 tumours and about 4 nodes, but when he had surgery they removed more than 40 tumours.

I know that some would say "don't do it" when it comes to exploratory surgery, but me ... I would go for it!

RE: Exploratory Surgery??

by tine1 on Tue May 21, 2013 02:09 AM

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Go for it Im with the previous post I would like exploratory surgery as they cant explain the pains I have in my stomach and my oncologist doesnt want to do surgery I too have heard of people being found with more tumours thanany scan showed. So to have the 'peace' of mind to be able to know what is exactly in there invaluable. Good luck

RE: Exploratory Surgery??

by kelly97 on Tue May 21, 2013 01:47 PM

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Thanks everyone for your comments. It does seem kind of dumb I guess if I don't if he ends up wanting to do it for sure.  My ct scans always shows either stranding in my mesentery, or reactive lymph nodes in my mesentery, or too many lymph nodes there.  And I have things growing on my liver.

The oncologist wanted to repeat my 5-hiaa again since it had been elevated last time to see if it's still elevated - and maybe now even more so.  It's been 3 wks & I still haven't heard back with any results.  I asked last week, but he said the results weren't back, yet. He did say that he has had multiple patients that had nothing showing on their scans, but found many carcinoid tumors when they did the surgery.  

-Kelly

RE: Exploratory Surgery??

by ClayBear on Tue May 21, 2013 01:56 PM

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Good luck Kelly!  Hopefully they can find whatever is causing all the distress.  Hearts are with you.

RE: Exploratory Surgery??

by PORTDIVA on Thu Jun 06, 2013 05:48 PM

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Hi LauriG,

I am in the same situation as you.  I was diagnosed 2 years ago due to sudden onset of chronic diarrhea.  Still havent found tumor but I am very ill. Im on social security disability now. I may get the chance for exploratory surgery due to the fact that I have had 3 camera swallow endoscopies and the camera wont move around at all.  My gastrointestinal doctor and my oncologist want me to go to johns Hopkins where they are well versed in carcinoid syndrome and gastro paresis (which I have) and while they are looking at my digestive system maybe they will find something.  I was diagnosed with carcinoid when my chromaganin a came back high. I am on 40 mgs of sandostatin evrry 28 days which helps some.

RE: Exploratory Surgery??

by kelly97 on Thu Jun 06, 2013 10:34 PM

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Is your social security disability related to your carcinoid syndrome or something else?

Next Wed I'm seeing a social security disability attorney to see if I can get on disability. Right now I'm applying for short term disability thru my work and on a leave of absence. I also have MS and systemic scleroderma.  They have me labeled as carcinoid syndrome but no tumors have been found.

I have tachycardia, flushing, & going to the bathroom every day. Along with so many more symptoms related to carcinoid and my other illnesses.  I just want to know what are my chances of getting approved - especially if your disability is related to carcinoid.

My oncololgist that my other oncologist sent me to is finally back in the office. He was out for some seminars and a death in the family. I won't get to see him until the end of the month to discuss surgery, etc.

RE: Exploratory Surgery??

by dlind48 on Thu Jul 04, 2013 03:56 PM

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Laparoscopic surgery may not be possible. My exploratory surgery was a full laparotomy, when we discovered carcinoid in my small intestine, mesentery, and liver, none of which had shown up on any scans. It's major surgery with a considerably long recovery time to completely resume normal activities, although I was driving within a week to 10 days after being discharged from the hospital and traveled 200 miles to Phoenix to attend a Jason Mraz concert at 4 weeks post-op. Balancing activity with rest is the key to recovery. Obviously, the less invasive procedure would be the best, but it is not always possible. Just so you know. It did give me peace of mind to know exactly what I'm dealing with, even though no cure was possible.

RE: Exploratory Surgery??

by kelly97 on Thu Jul 04, 2013 05:18 PM

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Same was true of my mom. Nothing ever showed on her scans and her 5hiaa was only mildly elevated - just like mine. They inly found hers thru surgery, but by then it was too late.  The octeotide scan of hers was negative just like mine. She tried sandostatin, but it only made her have more diarrhea. I remember you saying before that your pancreastatin (sp?) was the only one really elevated.

Now the oncologist is talking about doing an open biopsy while I'm awake on one of my enlarged axillary lymph nodes that shows uptake on a PET scan. If they get approval for it. If it comes back negative, then he wants to do the exploratory surgery orthoscopically. I hope they can find them that way.

He said he just sent a patient for the GA-68 scan & it was negative. His chromogranin A was 3000. They ended up having to do surgery and found the tumors that way.

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