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SDHB Positive and Ga-68 Dotatate Scan question.
Neuroendocrine Tumors (NETs) | Last Active: Jul 11, 2023 | Replies (10)Comment receiving replies
What areas of your body did they scan? Neck to pelvis? A Ga Dotatate PET-CT is a good scan for NETs that are metabolically active. If the NET is showing in hormone markers, it will probably show on the scan.
Less accurate for NETs that are non-functional.
Or that's what I've read anyway. Still debating what type of scan I would like to request. My hormone markers are erratically elevated. My tumor markers are not: chromogranin A, IL-2 and others.
Replies to "What areas of your body did they scan? Neck to pelvis? A Ga Dotatate PET-CT is..."
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Exactly. Neck to pelvis. I have had kidneys and liver issues for a while.
Out of nowhere, my new primary found that lump in my neck first week of June. Already had kidney surgery scheduled for end of June. Day before kidney surgery I learned that I have the SDHB mutation. Family medical history does not exist. They are all dead in Eastern Europe. Just about everybody I remember (been here longer then there) died from cancer of one kind or another. June has not been a very exciting month in hour family. Super glad I found this group. I will need to start a separate thread on hockey players and rare diseases here :-). Thank you again !!!