Anne McGinnis Breen
I thought I was being a hypochondriac, I had been to an eye doctor, a female gynocologist and finally a doctor of internal medicine who gave me a complete physical and found nothing wrong, just a "mildly overweight middle aged lady" he wrote. And finally my new primary care family doctor ordered a CT scan and found the 5 cm in diameter, left temporal lobe tumor dx and sx 1986 at age 39, after a year of sudden sharp stabbing sinus headaches, occasional fainting spells and now I know the TIA'S (transient ischemic attacks) were the sudden moments of profound muscle weakness I had. I had very heavy and exhausting menstrual periods too. I was almost relieved that there really was something wrong. After it was removed and I was walking and talking just fine I was told to forget about it and get on with my life. I was back working full time one year post op and continued to raise our three young children, but I felt enormous stress and fatigue and everything seemed much harder to manage and remember. I felt strangely emotional and weird to be crying so easily over everything.
Then in 1992 I had documented brain tumor recurrence six months after my total hysterectomy for uterine fibroids and endometriosis. Then since I had no headaches and it still wasn't bothering me like the first time, I chose a 1992 NCI SWOG 9005 Phase 3 clinical trial of Mifepristone for meningioma with Dr Steven Grunberg 1995-1999 (my tumor was stable for three years on the real drug, the progesterone receptor inhibitor, after I flunked on the placebo the first year when my tumor continued to regrow) instead of having the SW Tumor board recommended immediate second surgery and six weeks of IMRT brain radiation in 1992 or 1993.
I continued to teach at a local pre school and raise our 3 kids for eight more years and then after the NCI trial was closed as inconclusive in late 1999 (most of the other 199 participants had already had several repeat surgeries and brain radiation treatments unlike me) I finally agreed to my second craniotomy in 2000 at Barrows Neurological Institute in Phoenix, by Dr Robert Spetzler and his fine team where they safely debulked it. Since Feb 2005 when another recurrence was documented on MRI I started on 200mg daily Mifepristone, brand name Mifeprex again, in my own FDA approved investigational trial to current and my July 2005 head MRI compares well and my condition appears stable and unchanged in my most recent MRI in Nov 2014.
Its hard to find a doctor willing to prescribe progesterone receptor inhibitors like MIFEPREX Mifepristone off label for meningiomas, another old brand name is Corlux and now a new brand name Korlym for Cushing’s disease symptoms has been FDA approved as an orphan drug. BTW Dr. Harvey Cushing was the great neurosurgeon who named meningiomas for any tumors found anywhere around the brain in the three layers of meninges lining the brain and many of these low grade primary brain tumor types have progesterone receptors, like acoustic neuromas and vestibular schwannoma which also seem to have a much higher incidence in females than in male bt patients. I am also concerned that women, especially young girls, have a 50% higher risk of abnormal cells or tumors from the same "lifetime total low dose man-made" radiation exposures as REFERENCE MAN, but the EPA doesn't mention it much. There ought to be REFERENCE WOMAN and REFERENCE CHILD radiation rate scales as well. My favorite links for new readers to brain tumor info and clinical trial information are Al Musella's site www.virtualtrials.com and the American Brain Tumor Association at www.abta.org
