Patient discussion about primary
!!! The questions and answers on this page are written by patients and are not reviewed by health professionals.
Q. How fast can primary amyloidosis spread? And what is the average survival rate for this disease?
|A1||Your 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
|A2||As 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)
|A||Pathologic 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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