Ellen's Story

Published: August 2010

Ellen Endslow likes to know the details and have all the facts. They help her make decisions in her daily life and especially in her professional life as Director of Collections/Curator of the Chester County Historical Society.

Being detail oriented and a fact checker is advantageous when running a museum full of items rich in history and value. In her position, Ellen is responsible for the "big picture" and that means being aware of all the small details.

When Ellen was diagnosed with non-invasive breast cancer earlier this year, she immediately set out to gather the facts that would help her make a decision about treatment - because, unlike many people who face a cancer diagnosis and a specific course of treatment, Ellen Endslow was given choices. Ellen's cancer was in the early stages and confined, which meant she had treatment options and the time to collect the information she needed to make an informed decision.

"I am used to going to a doctor with a cold or the flu or whatever, and they give me medicine and I go home. I've never been in a position where I've had to make this kind of decision," says Ellen. "I was told right away that mine was not an emergency situation so I knew I didn't have to make my decision that very day or even that week. That was a great relief."

Better detection of breast cancer means that more and more women like Ellen are being diagnosed with the earliest, less threatening stages of disease, when treatments are less invasive and more options are available. But for women with high risk factors - like heredity and family history - the options become fewer and more invasive, and the chance of reoccurrence greater.

Ellen's sister is a 12-year breast cancer survivor, but there is no other known family history of the disease. Ellen wanted to understand how these factors could affect her particular situation and how they might help her identify her best course of action. Looking for the answer to that question led Ellen to the Cancer Risk Evaluation Program (CREP) of the University of Pennsylvania available at the Women's Specialty Center of Chester County Hospital.

The CREP program is specifically designed for women who want information about their personal and family risk for breast and ovarian cancer. The program is associated with the Abramson Cancer Center of the University of Pennsylvania and offers individualized counseling and evaluation of personal and family risk, along with a full explanation of genetic testing and whether it is a reasonable option to pursue.

Ellen found the process very simple and straightforward. She contacted the program and spoke with a certified genetic counselor - Jessa Blount, MS, CGS - who told her they could set up a counseling session that would explain genetic testing, but would not commit Ellen to testing. "I went for the counseling session and there was no pressure at all to have genetic testing, just a lot of valuable information that would help me to decide what I wanted to do," she explains.

Ellen learned a lot during the visit. She learned about the complexity of family history and genetic makeup. She was told about BRCA mutation, an irregularity in the breast cancer (BRCA) gene that can be inherited and is associated with a higher than average risk of breast cancer and ovarian cancer.

The presence of BRCA mutation does not mean that breast cancer will definitely develop, but it can make it much more likely. Genetic testing can determine whether or not the defect is present and indicate the need for proactive early detection and prevention measures. Ellen was surprised to find out that if one person in a family has a mutation, it does not mean that his or her siblings do as well.

She also found out that there are many variables related to developing breast cancer, some genetic and some environmental. According to Ellen, the CREP professionals covered all the bases and really put everything into perspective for her. She felt she was given the right information and the right vocabulary to understand and talk about what she was facing.

Ellen decided to go ahead and have genetic testing. "I realized that it would provide an important piece of information I needed in terms of how I was putting together the pieces of my particular puzzle," she explains. "And beyond what it would mean to me personally, I suspected that I could make a contribution to cancer research by doing it. Finding out something about my situation might help other people."

Ellen knew going in that the outcome of testing could have a significant influence on her decision regarding treatment. If she found out that she does indeed carry the BRCA mutation, the information could lead her to a more aggressive treatment. As it turned out, however, tests showed that Ellen does not have the BRCA mutation, a finding that helped her decide to take a more conservative approach to treating her breast cancer.

Standing on its own, the information Ellen received through genetic testing may seem more like a partial answer than a definitive one, because it doesn't tell her exactly how or why she may have ended up with breast cancer. But for Ellen, finding out she does not have the gene mutation was an important fact she felt she needed to truly see her whole picture.

"In a way, you never get a complete or exact answer when you are diagnosed with cancer, I will probably never know for sure how or why it developed. But working with the more current research that is available gave me a better perspective about what I am dealing with today and how to make the very best decision I can for myself right now. It helped me to get my head in a place where I could make the most informed decision, one based on facts rather than emotion."

By Beth Eburn