It is with heavy hearts that we are letting you know that Lilla Romeo, Center of Excellence advocate extraordinaire and cherished friend, died of breast cancer on June 9, 2010, more than ten years after her diagnosis with metastatic disease.  As she described below in her welcome message, she was diagnosed with brain mets in 2008, treated successfully at first with stereotactic radiosurgery.  Last year, when new brain metastases became too numerous to treat in this way, Lilla enrolled in a clinical trial of whole brain radiation accompanied by a brief course of one of a new and promising class of drugs known as PARP inhibitors.  Although the treatment she received was entirely successful in controlling any further brain metastases, by this time, after so many years of treatment, her cancer had become resistant to all chemotherapy drugs, and in recent months spread rapidly to her liver and lungs.

It was a great pleasure and honor for both of us to work with Lilla. Whether a treatment was successful or not, she always radiated an intense joy in living, and a warmth and grace that is hard to describe.  She shared her life so generously with all of us, and was fiercely committed to her advocacy work.  She touched all of the physicians and scientists in our Center of Excellence.  She inspired us and will continue to inspire us in our work.  

Musa Mayer and Helen Schiff

A Welcome Message from Lilla  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. And for me, so far, so good.   

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.

       Lilla Romeo, Musa Mayer and Helen Schiff

          The COE Advocates - December 2008

 

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 The materials in the Brain and CNS Metastases and Treatments sections have been medically reviewed by physicians who are part of our Center of Excellence.

All information on this website is intended for general knowledge only and is not a substitute for medical advice or medical treatment. We intend the information on this website to support, not replace, the relationship that exists between you and your doctor. 

Dr. Patricia Steeg and Kevin Camphausen are employees of the intramural program of the National Cancer Institute.  They participate in the Center of Excellence as part of their official government duty.  Their viewpoints expressed do not represent the National Cancer Institute.