Esta página en Español
What's new:
As part of their recommendation that women with brain metastases be permitted to participate in Phase I clinical trials, neurosurgeons Nicholas Marko and Robert Weil, of the Cleveland Clinic, review and update the prognosis for brain metastasis patients. Dr. Weil is a member of our Center of Excellence. Some excerpts:
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"The frequently held conception that the presence of BM (brain mets) portends imminent neurologic decline and impending death are predicated on outdated data. While WBRT and corticosteroid therapy was once the sole, palliative treatment strategy for patients with BM, the rapidly evolving, modern era of multimodality management of CNS (central nervous system) disease has afforded a nearly fourfold increase in the mean survival expectation of these patients over the past 15 years... Aggressive local therapy for BM has shifted the nature of morbidity and death of these patients, with the majority of those with advanced-stage cancer now dying from their primary disease rather than from their CNS metastases....In summary, modern, multimodality therapy for patients with BM has resulted in significant improvements in local control and overall survival, and CNS disease is no longer the primary determinant of premature debility or mortality."
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A Welcome Message from Lilla Romeo, 2008
I would like to personally welcome you to the BrainMetsBC.org website. My name is Lilla Romeo, and I am one of the three breast cancer advocates working with the research
Center of Excellence (COE) devoted to the study of brain metastases that is responsible for this website. Until a few months ago I knew very little about brain metastasis. Like everyone else, and possibly you, I shied away from too much information. I didn’t want to frighten myself or tempt fate in any way. The less I knew, the more unlikely it would be to happen to me.
I was originally diagnosed with breast cancer 13 years ago, in 1995. Five years later, while still taking Tamoxifen, I suffered a recurrence. I have now been metastatic for 8 years. I’ve taken the usual mets roller coaster ride that most of you have experienced. As we work our way through treatment after treatment, wondering how many more are out there and hoping that even more are in the pipeline, we come to feel as though we are constantly buying time. After a while we become very tuned into our own bodies.
It was because of a few unusual symptoms, that several months ago I requested a brain scan. By the time the date arrived for the scan, the symptoms, along with my fears, had disappeared. Imagine my surprise when the next day my oncologist called to say that they had found 2 tiny spots on my brain. The news was devastating. While breast cancer is every woman’s nightmare, and metastasis is the nightmare of everyone who has breast cancer, brain metastasis is the nightmare of everyone who has metastatic disease. It was so frightening that I couldn’t speak to anyone about it. I could barely allow myself to think about it. None of this is news to you. You wonder how many tears you can actually shed. You wonder if you will ever feel like your old self again and if your friends and family will ever think of you in the same way. You wonder if you will lose the person you are. It is the most terrifying diagnosis anyone can have, even those of us who are used to bad news.
I was scheduled for Gamma Knife (stereotactic radiosurgery) a few days later. You can read what my treatment was like in
Talking about Treatments.
But we still know far too little about brain mets. We don’t even know with certainty whether chemotherapy gets through the blood brain barrier and to the brain. Current treatments remain few in number and uncertain in effect.
Research, including this Center of Excellence (COE) for the prevention and eradication of brain metastasis, is of critical importance. We want the breast cancer community to understand that it can’t be just about finding “the Cure.” The real killer is metastatic disease, and the most pernicious of all is brain mets. While we continue to search for the cure, we must keep fighting for more research funding to study metastatic breast cancer and brain mets in particular.
While the fear of brain mets still lives within me, I now realize that avoidance is counterproductive. We must make our voices heard. We’re in this together. It can happen to anyone. Let’s join together to make sure it stops here and doesn’t happen to our daughters.
NOTE: Lilla Romeo died of breast cancer in June, 2010. Her contributions to this website, including the new Spanish language translation, continue to make a difference. Read more about Lilla...
Lilla Romeo, Musa Mayer and Helen Schiff
The COE Advocates - December 2008
