Neuroendocrine Tumor Imaging

I'm back again with another question.  I have a recurrance of my VIPoma neuroendocrine cancer with a lesion on the head of my pancreas.   Apparently, this is hard to take a picture of and doesn't show up on a CT scan about 30% of the time.  My dr is not sure what to do.  Has anybody faced this problem and what did you do? Apparently the cancer is "quite subtle" according to doctor.  Thanks.

Still Kickin 

I'm not sure if this is the same type of cancer you are faceing now(neuroendocrie), but my friend has recently been diagnosed with neuroendocrine carcinoids in both her pancreas and lung.  7 years ago she had the same removed from her vocal cords.  These were found by first CT Scan and confirmed by PET Scan. Dr.s' do not want to treat these as she is non symptomatic at this time. Although she is experiencing severe abdomincal pain and chronic constipation.  Dr's don't believe this is due to the pacreas carcanoids, although she believes it is.  

Any feedback?????

Thanks  Charl

I'm not positive, but an octreotide scan which is a nuclear medicaine scan may work and is often used to diagnose neuroendocrine tumors. Also my doctor preferred to use an MRI because he didn't think my neuroendocrine tumor would show up on a CT scan.

My husband was recently diagnosed with small-cell neuroendocrine pancreatic cancer, with spread to the liver.  He took an octreotide test mentioned below, which are doctors (we got 2 opinions) said would "light up" neuroendocrine tumors (his regular CA-19 pancreatic markers were normal). 

 Also, can they biopsy and stain for neuroendocrine markers?

On 3/2/2008 ramones wrote:

I'm not sure if this is the same type of cancer you are faceing now(neuroendocrie), but my friend has recently been diagnosed with neuroendocrine carcinoids in both her pancreas and lung.  7 years ago she had the same removed from her vocal cords.  These were found by first CT Scan and confirmed by PET Scan. Dr.s' do not want to treat these as she is non symptomatic at this time. Although she is experiencing severe abdomincal pain and chronic constipation.  Dr's don't believe this is due to the pacreas carcanoids, although she believes it is.  

Any feedback?????

 

Thanks  Charl

I just posted a message re: octreotide, but want to respond to this as well. I apologize in advance for the length!  My husband, 43, was diagnosed in January with neuroendocrine pancreatic cancer.  Our first oncologist (at a well-respected Boston hospital) told us not to treat (just get a CT every 3 months to monitor) because (i) neuroendocrine is slow-growing, and (ii) they didn't think his symptoms were related to the cancer.  Meanwhile, my husband continued to have abdominal pain and constipation (though likely from the pain medication), night sweats, loss of appetite and occassional nausea.   So, we went back to the doctor's a week later and they did another CT to make sure his internal stent (to open bile duct) was working properly.  It was, but they found that some of his tumors in the liver had doubled in size.  They changed their minds and wanted to start chemo the next day.

We went to get a 2nd opinion at a Cancer Center in Boston.  Their pathologists determined it was a VERY rare form of neuroendocrine pancreatice cancer called small cell, which is much more aggressive than typical neuroendocrine, and requires a different chemo regimen.  We started the different chemo regiment the next day.  Btw - "small cell" is more commonly associated with lung cancer (there is almost no literature related to pancreatic).

I don't have any basis for my opinion other than what I have just gone through, but I think your friend should at least consider getting another CT soon to compare tumor growth.  If we went with the first opinion and never went back for pain and another CT, we would have sat around for another 3 months while the tumors grew and multiplied.  We also probably would have never discovered it is small cell neuroendocrine.  It may be that monitoring is best (if there is no growth), but when someone is having symptoms (I don't know why doctors keep saying the symptoms aren't the cancer), I would feel better getting another CT sooner rather than later.

Hello

My name is Janet. I am English and was diagnosed with advanced Pancreatic Neuroendocrine with multiple secondary tumours in 2003.The initial prognosis was poor and I was told that as my cancer was so widespread it was inoperable and that I could only receive palliative care or go to a hospice: I love life, and refused to accept that prognosis. It has been a  long and perilious journey, but I am still here enjoying my life. Don't give up.

On 3/3/2008 Daisy15 wrote:

My husband was recently diagnosed with small-cell neuroendocrine pancreatic cancer, with spread to the liver.  He took an octreotide test mentioned below, which are doctors (we got 2 opinions) said would "light up" neuroendocrine tumors (his regular CA-19 pancreatic markers were normal). 

 Also, can they biopsy and stain for neuroendocrine markers?

 

Hi Daisy15,

I thought I would try to answer your questions, especially since I understand how confusing this all can be. I have been an inpatient cancer nurse for 2 years and a cancer research nurse for 6 months and only really began to understand this all when I was diagnosed with a nonfunctional neuroendocrine tumor in December of 07. I am not familiar with small cell neuroendocrine tumors, however I am familiar with those tests. The octreotide scan is specific to neuroendocrine tumors and the tumor will "light up" if the tumor is a functional neuroendocrine tumor (mine did not light up because it was nonfunctional). The CA19-9 tumor marker is not a diagnostic test- meaning it can be used to monitor a tumor but not diagnose. My CA19-9 was elevated when I had my stent in my bile duct, but returned to normal when it was removed even though I still had a tumor. This tumor marker can become elevated in people without tumors and can also be normal in people with tumors. They can biopsy and stain for neuroendocrine tumors. This can be done by surgery, when the tumor is removed, they can cross section the tumor and stain it to determine the type of tumor. Or depending on where the tumor is located they can do an Endoscopic Ultrasound (EUS) with Fine Needle Aspiration (FNA) and biopsy the tumor without surgery and also do the staining (I had this done twice before I had a whipple done earlier this month). I hope this is helpful. Good luck to you and your husband.

On 3/13/2008 Janet7 wrote:

Hello

My name is Janet. I am English and was diagnosed with advanced Pancreatic Neuroendocrine with multiple secondary tumours in 2003.The initial prognosis was poor and I was told that as my cancer was so widespread it was inoperable and that I could only receive palliative care or go to a hospice: I love life, and refused to accept that prognosis. It has been a  long and perilious journey, but I am still here enjoying my life. Don't give up.

Hello Janet

I'm another "English Patient" with a pancreatic Net like yours.  I had major surgery in June 2005 to remove the primary tumour (note the spelling!) and a wedge resection to remove a liver met in February 2006.  I've been receiving treatment at St James's Teaching Hospital in Leeds.

I've now got another six liver mets which are not Octreotide responsive - don't show up well on the SPECT scan. 

 I'm thinking now about joining a clinical trial and waiting to talk to the oncologist.  Any hints you can pass on?

Best wishes

Tim