Re: Neurofibromatosis and hormone replacement thearpy

Posted By C. Jenkins on April 22, 1999 at 13:06:14

Topic Area: Neurofibromatosis
Does hormone replacement thearpy (i.e., Prempro) have any affect on tumor (neurofibroma) growth? I have noticed an incease of neurofibromas - as well as enlargement of existing neurofibromas, but am not sure whether or not to attribute it to the regular progression of the disorder or to the hrt.




4/22/99
   If I may, I would like to respond to this question.  I have NF-2 and  was on HRT for over 2 years.  My case involves the cranial nerves (7th being the most involved) on the left side of my face.  I am facing surgery for the removal of a meningioma on the temporal lobe and a "tumoral mess" in the left orbit and on the optic nerve.
   HRT began in Aug. 1994 and ended in Nov. 1996.  Within the first year, the existing schwanoma crowding my parotid duct went into what can only be described as a growth-frenzy.  Up until that point, tumor growth was fairly inconspicuous.  I had several large ones excised from my eyebrow and cheekbone a long time before the frenzy began.
   During the middle of the second year, my eye began to bulge and new fibroma began a thickening process in my temple.  By the end of that year, nerve pain was horrid and I could no longer keep track of all the new growth.  The beautiful cathoplasty resection that had been performed on my lower left eyelid to correct laxity caused by paralysis before HRT was lost.  Instinct told me to quit taking Estrace and Provera.
   The way I understand tumor growth is that while their cause is unknown, most contain a loss of genetic material from chromosome 22 at a place within the gene for neurofibromatosis.  Tumors release hormone receptors, estrogen receptors being released to a lesser degree, progesterone to a much greater degree.
   Female patients with neurofibromatosis need to know that there is a multi-center trial underway examining the possible connection.  Treatment with anti-estrogen receptors has not been effective, but treatment with anti-progesterone receptors has shown some promise.
   This question disturbed me because the growth acceleration that I personally witnessed (the 7th cranial cannot help being immediately known) is directly associated.  Responsibility lies completely in the garden of HRT, because in my case, progression was very slow up to that point.  In my opinion, women with neurofibromatosis should not participate in HRT.  Anti-progesterone therapy, if and when it is available... now that's a different story.  
Thanks for listening,
C. Jenkins

[CCF Neuro[P] MD RPS]

Posted By CCF Neuro[P] MD, RPS on May 12, 1999 at 13:19:19
Dear C. Jenkins:
As stated in other postings, some but not all meningomas contain estrogen receptors.  It is unclear whether those with estrogen receptors are responsive to estrogen for rapid growth.  We know that most meningomas are slow growing and there does not seem to be a difference between men and women.  Obviously, women have higher estrogen levels and cycle.  However, some women have noted an increase in growth of their meningoma with pregnancy and after taking replacement hormone therapy.  However, some women who are not on hormone therapy also experience meningoma growth.  Thus, it is individual.  I am sorry that you are one of the unlucky ones.  I hope that your surgery goes well.
Sincerely,
CCF Neuro[P] MD










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