Patient discussion about primary

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Q. How fast can primary amyloidosis spread? And what is the average survival rate for this disease?

A1Your best bet for one-stop shopping for amyloidosis information on the net is http://www.amyloidosis.org. There is also a Yahoo group named amyloidosis and also a mailing list named amyloid hosted by the Association of Cancer Online Resources. The amyloid list has around 500 subscribers, amyloidosis Yahoo group has maybe half that many. Face-to-face support for patients and caregivers is also available in most large metropolitan areas two or three times a year. See http://www.amyloidosissupportgroups.com for details.

To join the amyloid list, see http://www.acor.org/amyloid.html
A2As recently as 1994, a diagnosis of amyloidosis was a death sentence; average life remaining after diagnosis, 13 months. Now there is hope--not certainty of a long life, but 25% to 60%. depending on individual circumstances. I was diagnosed 2/99, treated 6/99, recovered completely, relapsed 11/03, and am still kicking.

Q. what is the most accurate pathological test to identify the primary source of a cystic mass in the neck?

the mass was removed. Pathologist was unable to identify the source and diagnosed the mass as a branchilogic carcinmoa (which is extremely rare, if exists at all). Therefore, I am looking for the most updated test and examinations that can be applied to blocks of the mass and determine their origin (primary source)
APathologic examinaions under a microscope are the most accurate ones there are, and sometimes even they don't help to identify the cell types. I do not have any other ideas on other tests you can do, and I believe you should follow the treatment your doctors will advise you based on this diagnosis they have made.
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