Where:
Era of Hope Conference

Good Morning Everyone,

It is an honor to deliver the consumer's perspective on the technology of Genetic Profiling and Studies of Gene Expression. It truly is a step in the right direction to accept the fact that Cancer is not just one disease, to recognize that all cancers should not be treated the same. We know that there are many different types of tumors and we need to accept that there will never be just one cure for all tumors across the board. There is great promise in these scientific conferences where we can have interdisciplinary discussions and discourse. This helps us keep our eye on the Big Picture. As a consumer, it is intriguing to me to hear about all the little pieces of the puzzle that we think we need to place together in order to solve the problem. Era of Hope truly allows for collaboration between government, scientists of all disciplines and consumers to better understand the puzzle.

The trouble is, we are given pieces from many puzzles and they need to be sorted before they are put together and we are given the ingredients to all dishes ever cooked around the entire world and our kitchen can be very crowded and disorganized especially when preparing different dishes simultaneously. But that is a challenge really to all of you?.which of you can look at all these pieces and tell us which goes where, with which puzzle and how they fit together to create the picture of a deadly disease? Who can use only the ingredients necessary in order to change a soup into a stew making sure it does not boil over the edge of the pot and get out of control. We must consider how each piece of the recipe works with other ingredients to insure a successful cure in all cases.

Today is my son?s fourth birthday and that brings me to think about how today a baby is born while it is still in the womb. We know the baby?s sex, we can test for birth defects and abnormalities, we can see them in three dimensions living in a purely blissful state where all their needs are automatically taken care of by mother?s amazing body. We have the ability to know so much about that child before they can be held by anyone but the mother. It astounds me that we know so much about an unborn child, and yet so little about a disease that kills 40,000 per year and affects 240,000 others every year. I remember being told 11 years ago, that I should have chemotherapy because 1 in 5 women with my pathology will be helped by the chemotherapy, but we do not know which of the five you are. You might need it, and you might not. Out of fear, I chose it, suffered the unwanted affects of it, and am happily here to celebrate life!

As genetic profiling succeeds, I hope that we can prescribe drugs with a more accurate view of who actually needs them. But in terms of prevention ?.we must consider that everyone has some genetic pre-disposition to something. Some know what that pre-disposition is?some do not. Most are not certain if they will die from it, but we do know that most likely, everyone, everywhere has a pre-disposition to something bad or good. There is a wide array of diseases that haunt us. If only we could figure out who has what, when, how long and what it all amounts to in the end. Might they get hit by a truck before they die of their genetic pre-disposition?

In order for the science that tells us who should be treated to mean something, we need to understand how to end the disease for all. This is the only way to provide answers for those of us with a window into our genetic potential. We also need to gain access to care for everyone. The uninsured and underinsured could be cases that unlock the mystery behind the disease. If they are not seeking early detection, treatment, or participating in clinical trials, then we are missing out on the major ingredient that turns the soup to stew. We also need to be careful, because clearly there are patients who are over-treated. Perhaps that tiny tumor in their breast would never kill them and we can over-treat them making their soup boil over.

I?d like to present a case study to you. A 25 year old woman presents and through genetic profiling we come to know that she has a genetic predisposition to breast cancer. Although, she knows that the survival statistics are good for breast cancer, she is afraid and believes that she will die of the disease, is not married, has no children. She has a fast paced career that she wishes to put ahead of all else. She chooses a bilateral mastectomy and oopherectomy to prevent breast cancer.

It is 12 years later, and now at 37 her bones are very weak, she has a hard time working long hours in her field because she cannot keep up physically. She has been hormonally miserable and unable to enjoy sex with her romantic interests over the years. She is childless and wondering what she missed out on. She did not ever get cancer, but she did not live the life that a young woman should have lived. She feels 67 instead of 37 and does not know how to cope. I consider this woman the Anti-Joy!

You see, I developed ER + BR cancer at 26. I was treated with mastectomy, and CMF and nothing else. And I often wonder if at age 25, they could have told me it was going to happen?would I have taken steps to prevent the cancer dx.

I do not know the answer to that question, but I do know this. At 25, I never imagined that I would be married with two children by the age of 34. At 25, I didn?t think having a family was important to me. I now believe that it was my cancer journey that made me realize how much I wanted a husband and family. The entire experience made me understand that life needs to be lived to the fullest, that I was a woman who needed to love and to experience being loved, I needed to be a mother and especially after one of my breasts was sacrificed to cancer, I needed to nurse my children. I didn?t value these things before cancer, but somehow, they became more precious after cancer. And I often think, what if things had turned out differently. What if I knew at 24 or 25, that cancer was coming and I could remove my ovaries and breasts to prevent it from coming. What if I had chosen those options, I might have still met and married my husband, I might have adopted children. Life might be better?.but knowing what I have today?.I cannot imagine it being better. My son and daughter are precious gifts. They might have my husband?s Thalesemia trait or some genetic pre-disposition to cancer from me. But no one can tell me how it will affect their lives. Right now, they are intelligent, well adjusted, happy children and I am so grateful that they are in my life.

But now, as I look to the future that everyone promises will be better for my daughter, who needs to begin cancer screening at age 16, I worry about what they might tell her. Will they suggest that she have profilactic surgery if nothing better exists? Will she miss out on children? Perhaps her possible genetic predisposition will never harm her. How do we really know what piece of the puzzle goes where for everyone.

The science that you are about to hear about is important because it hopefully answers a piece of the puzzle. But we need to remember that there is a whole big picture that we have to piece together. Each piece can only provide so much information. The answers must be sought in every patient. We must find a way to insure healthcare for all, so that we are certain that the answers that work in some, will work in all of us. We must encourage everyone to participate in clinical trials so that we can insure that we learn from everyone. The biology of this disease is different in all of us. How can we begin to understand it, if millions are going without insurance and care? The National Breast Cancer Coalition?s number one legislative priority is to find a means of providing access to care for all. The organizations mission is to end breast cancer, but we know we cannot do that without first achieving our number one priority. In addition, scientists cannot look at the ?Big Picture? without a clear view of all the women affected by the disease.

Genetic profiling is dependent upon looking at very large groups of women, from all walks of life. In order to prove this science effective, we need to duplicate results in large studies. In order to prescribe that people change the course of their lives in order to avoid a disease as a result of genetic pre-disposition, we must remember that a woman?s life is shaped by so much more than her genetic profile. We need to be careful before suggesting that we change our lives as a result of this science.

I want to leave you with an image that I woke up to last week at 6:30 am, but first I have to explain to you The only normal my children have ever lived is truly shaped by decisions I made before they were born. One of those choices was that I chose a mastectomy without reconstruction. It took some time for me to adjust to my new normal. It was a long journey, but I realized the other day that my children have a very different normal than other children, and this is all that they have known all their lives. My daughter Maya awoke at 5:30 am she was tired and cranky and she asked me for apple juice. I said no and tried to convince her to snuggle with me for a bit. I went back to sleep to her chants, ?apple juish, apple juice?, she was angry with me.

She wanted juice and comfort and this is where she found it. This is Maya?s normal. My prosthesis is part of her life. I hope that she never has to know the new normal that I had to adjust to in 1994. In closing, I have a great deal of respect for the science that you work through everyday. I want to encourage collaboration. Genetic profiling is important, but remember that it is a piece of the recipe. Please collaborate with each other so that all women can lives to their greatest potential.