Hi Adam,
I'm sure I posted this abstract (below) on this board a few weeks ago but cannot find it for looking, so will just paste it again.
Also the UK CAH Support group CLIMB recently published a story about a close encounter with surgery for a young man who was about to have bilateral orchidectomies which were cancelled on the last day because the mother was concerned about the decision made by a urologist (I think it was). You may be able to write to CLIMB to get a copy. Write to: http://www.climb.org.uk/
Authors: Claahsen-van der Grinten HL. Otten BJ. Hermus AR. Sweep FC. Hulsbergen-van de Kaa CA.
Institution: Department of Paediatric Endocrinology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands. h.claahsen@cukz.umcn.nl
Title: Testicular adrenal rest tumors in patients with congenital adrenal hyperplasia can cause severe testicular damage.
Source: Fertility & Sterility. 89(3):597-601, 2008 Mar.
Abstract
OBJECTIVE: To evaluate the histological features of testicular tumors and residual testicular parenchyma in male patients with congenital adrenal hyperplasia (CAH) and longstanding bilateral testicular adrenal rest tumors (TART).
DESIGN: Descriptive study.
SETTING: University medical center in the Netherlands.
PATIENT(S): Seven male patients who had CAH with longstanding bilateral TART and who were treated with testis-sparing surgery.
INTERVENTION(S): Enucleation of TART and taking biopsies of the surrounding testicular parenchyma.
MAIN OUTCOME MEASURE(S): Description of the histological features of TART and residual testicular parenchyma.
RESULT(S): All tumors had a similar histological appearance, with sheets of polygonal cells separated by dense fibrous tissue with focal lymphocytic infiltrates and without Reinke crystals. All biopsies showed a decrease in tubular diameter with peritubular fibrosis and, in four patients, tubular hyalinization. The germinative layer showed decreased spermatogenesis and reduced Johnsen scores.
CONCLUSION(S): Testicular adrenal rest tumors can lead to end-stage damage of testicular parenchyma, most probably as a result of longstanding obstruction of the seminiferous tubules. Therefore, treatment at an early stage is advised.
