Carcinoid or Mastocytosis

My story begins in Jan of 2005 with unexplained flushing.  I am 45 yr old female.  Hormone tests came back ok - flushing is not hot flashes related to menopause.  
Doctor tested for carcinoid with the 24hr urine and came back normal.  Blood work showed high histamine so they started testing for Mastocytosis.  All bloodwork was normal.  Did a lung, abdominal & pelvic CT scan.  Only one thing showed as a fibroid on ovary but was ok.  I noticed brown spotting on my arm and neck which dermatologist thought was just sun damage but did a skin biopsy anyway.  Turned out positive for Mastocytosis (TMEP).  Did bone marrow biopsy to check for systemic involvement - all Normal.  So hematologist decides to send me to Sloan in NY for second opinion just to be sure.  Went to Sloan to a hematologist there who is familiar with Mastocytosis.  He is not completely convinced about the Mastocytosis diagnosis since the type, TMEP is often confused with Carcinoid.  So now, he is suggesting a Octreotide Scan to finally once and for all rule out Carcinoid and then know we will just live with the Mastocytosis.  Please tell me what you think and what about this scan?  I am terribly claustrophobic and can't sit still for too long (which is what you need to do with this test).  Would Xanax help me with that?

[Kevin Pho, MD]

The octreotide scan has a complementary role with other imaging studies (such as CT, MRI or ultrasound).  By itself, it may not be accurate anough to make the diagnosis - however if the CT scans have been non-revealing thus far, it can be used for further testing.  Thus, I think it is a reasonable test to consider if carcinoid is still in question.

Patient information on the scan can be found here:
http://www.healthsystem.virginia.edu/internet/radiology/nuclearradiology/octreoscan.cfm#To

If anxiety is a concern, you can discuss with your personal physician whether a short-acting sedative like Xanax may be helpful.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com

[Sarah Connors]

[Nanlyn]

Yes.  My urine test did show high histamine level.  The bone marrow biopsy showed no evidence of systemic involvement of the Mastocytosis. The only positive was the skin biopsy.  Went to second opinion hematologist at Sloan.  He is currently re-reading all of the slides and in the meantime wants that scan done to completely rule out carcinoid (which can be confused with Mastocytosis when that has been diagnosed as TMEP).  Would love to hear from you further on this if you have experience with either of these diseases.  I do not have any other symptoms except for the flushing.  Feel free to email me (easier to converse that way) ***@****.  Thanks.

[Sarah Connors]

[Nanlyn]

Hi Sarah.  I am wondering if you are a doctor or nurse or some medical professional.  That would be great if you are and are familiar with both of these diseases.  Is that the case?

Anyway, a little history as far as the testing goes:
The 5-HIAA test levels (done 3 different times) 3.8, 2.8 & 5.3
My very first original urine had histamine of 102.3.  The blood histamine was actually normal.

As far as the skin biopsy, the report says the following:
Number of mast cells is aprroximately 12-15/HPF most likely representing a subtle manifestation of Mastocytosis such as TMEP. Multiple sections were examined.

The appearance of my skin is just smooth brown patches on my forearm - they are a bunch of little spots in one big patch from my wrist to half way up to my elbow.  They are not red and bumpy.  

I would love to hear more from you.  And can you tell me a little more about that scan since I am so anxious about it?
Thank You.

[Sarah Connors]