The following posting was written by Hester Hill Schnipper, LICSW, BCD, OSW-C. Hester is Program Manager, Oncology Social Work at Beth Israel Deaconess Medical Center in Boston. She is a two time breast cancer survivor and author of “After Breast Cancer: A Commonsense Guide to Life after Treatment!”  Read her daily blog: "Living with Cancer" http://bidmc.org/livingwithbreastcancer

    Here are the facts: Angelina Jolie’s mother died of breast cancer, and Ms. Jolie carries the BRCA1 gene mutation. She estimated that this gene gave her an 87% chance of developing breast cancer and a 50% chance of developing ovarian cancer over the course of her lifetime. She had preventative bilateral mastectomies and reconstruction in February 2013.

    Since Ms. Jolie spoke publicly of her decision, the “Angelina Jolie Effect” has been noted worldwide. This has meant that more women have been tested for the BRCA1 and BRCA2 mutations, and more women have opted for prophylactic mastectomies to greatly reduce their risk of developing breast cancer. It has also meant that more women who have been diagnosed with breast cancer have chosen to have bilateral mastectomies when their doctors have told them that these surgeries will not increase their odds of survival more than having a wide excision/lumpectomy and radiation. In fact, the percentage of women who have been diagnosed with early stage breast cancer in one breast who opted for bilateral mastectomies rose from 5.4% in 1998 to almost 30% in 2011. Note that these numbers predate Ms. Jolie’s experience, so the newest statistics are likely to be higher.

    There have been many articles written about this trend, and I am writing about what I hear and observe at BIDMC. I am the Manager of Oncology Social Work at this large university-affiliated hospital, and have been working with women with breast cancer for more than 35 years. I have had two breast cancers myself and been treated with surgery, radiation, chemotherapy, and hormonal therapy. This dual perspective and many relationships give me an unusual perspective on women’s struggles and choices. Since my professional life is focused on women with cancer, I know only a few women who, without a cancer diagnosis, tested positive for a BRCA gene mutation and chose to have surgery. Their decisions may be even more influenced by Ms. Jolie than those women who actually have cancer and need surgery.

    All people who are diagnosed with cancer are afraid. Most of us immediately think: “Am I going to die?” If we have children, the next worry is about them. No one who has just heard a cancer diagnosis is thinking with the same level of clarity that she usually does. We are overwhelmed, at least for a wThe following posting was written by Hester Hill Schnipper, LICSW, BCD, OSW-C. Hester is Program Manager, Oncology Social Work at Beth Israel Deaconess Medical Center in Boston. She is a two time breast cancer survivor and author of “After Breast Cancer: A Commonsense Guide to Life after Treatment!” Read her daily blog: "Living with Cancer" http://bidmc.org/livingwithbreastcancer

Here are the facts: Angelina Jolie’s mother died of breast cancer, and Ms. Jolie carries the BRCA1 gene mutation. She estimated that this gene gave her an 87% chance of developing breast cancer and a 50% chance of developing ovarian cancer over the course of her lifetime. She had preventative bilateral mastectomies and reconstruction in February 2013.

Since Ms. Jolie spoke publicly of her decision, the “Angelina Jolie Effect” has been noted worldwide. This has meant that more women have been tested for the BRCA1 and BRCA2 mutations, and more women have opted for prophylactic mastectomies to greatly reduce their risk of developing breast cancer. It has also meant that more women who have been diagnosed with breast cancer have chosen to have bilateral mastectomies when their doctors have told them that these surgeries will not increase their odds of survival more than having a wide excision/lumpectomy and radiation. In fact, the percentage of women who have been diagnosed with early stage breast cancer in one breast who opted for bilateral mastectomies rose from 5.4% in 1998 to almost 30% in 2011. Note that these numbers predate Ms. Jolie’s experience, so the newest statistics are likely to be higher.

There have been many articles written about this trend, and I am writing about what I hear and observe at BIDMC. I am the Manager of Oncology Social Work at this large university-affiliated hospital, and have been working with women with breast cancer for more than 35 years. I have had two breast cancers myself and been treated with surgery, radiation, chemotherapy, and hormonal therapy. This dual perspective and many relationships give me an unusual perspective on women’s struggles and choices. Since my professional life is focused on women with cancer, I know only a few women who, without a cancer diagnosis, tested positive for a BRCA gene mutation and chose to have surgery. Their decisions may be even more influenced by Ms. Jolie than those women who actually have cancer and need surgery.

All people who are diagnosed with cancer are afraid. Most of us immediately think: “Am I going to die?” If we have children, the next worry is about them. No one who has just heard a cancer diagnosis is thinking with the same level of clarity that she usually does. We are overwhelmed, at least for a while, with anxiety and sadness. It is unfortunate the huge decisions have to be made during this stressful period. Making a choice about lumpectomy vs. mastectomy vs. bilateral mastectomy brings lifelong consequences. There are some women, including those who carry a gene mutation, who have a medical reason to proceed with bilateral mastectomies. Most women, however, have reasons related to fear and an inaccurate understanding of risks and benefits and survival rates. Once the surgery is done, you can’t go back and redo it. Once a breast is gone, it cannot be replaced.

Having personally lived most of my life with two breasts and the last ten years with one, I can say with confidence that it is better to have breasts than not. I can say with even more confidence that the most important thing is being alive and healthy, but the fear too often muddles the facts. Women express fear about recurrence and survival, but they also talk about the ongoing stress and worry. It may seem easier to remove both breasts than to face annual mammograms and, possibly, Breast MRIs. It may seem that the intense anxiety around diagnosis will never diminish, and that a full night’s sleep is a vanished memory. Both things are rarely true.

Let me be clear. I will always support a woman’s choice to make the best choice. I talk often with terrified newly diagnosed women about the need to make decisions that will help them sleep both tonight and five years from now. I sometimes remind women that they can proceed with a lumpectomy and radiation and, if the anxiety persists and feels impossible, they can come back for a mastectomy in the future. Over the course of my career, I have never known a woman who came back. As the months and years pass, the fear diminishes, and life resumes a normal rhythm.

Yes, there is excellent breast reconstruction available, and we are blessed to have kind and competent plastic surgeons at BIDMC. None of them would ever say that a reconstructed breast is a perfect substitute for a natural one. There are scars, and there is little or no sensation, and there is a lot of surgery to get through. Most women are pretty happy with their reconstructed breasts, but some regret the decision and wish, at least, that they had taken more time to consider the choices. Having cancer is a big deal, and having a mastectomy is a very big deal, and reconstructive surgery is a huge deal. Think about this carefully.

Choose Life always. But choose treatment with careful conversation with your doctors and understanding of the realities and the accurate numbers. Breast cancer is rarely a medical emergency, and women can take time to educate themselves, to process their feelings, and to make the right decision for life.hile, with anxiety and sadness. It is unfortunate the huge decisions have to be made during this stressful period. Making a choice about lumpectomy vs. mastectomy vs. bilateral mastectomy brings lifelong consequences. There are some women, including those who carry a gene mutation, who have a medical reason to proceed with bilateral mastectomies. Most women, however, have reasons related to fear and an inaccurate understanding of risks and benefits and survival rates. Once the surgery is done, you can’t go back and redo it. Once a breast is gone, it cannot be replaced.

    Having personally lived most of my life with two breasts and the last ten years with one, I can say with confidence that it is better to have breasts than not. I can say with even more confidence that the most important thing is being alive and healthy, but the fear too often muddles the facts. Women express fear about recurrence and survival, but they also talk about the ongoing stress and worry. It may seem easier to remove both breasts than to face annual mammograms and, possibly, Breast MRIs. It may seem that the intense anxiety around diagnosis will never diminish, and that a full night’s sleep is a vanished memory. Both things are rarely true.

    Let me be clear. I will always support a woman’s choice to make the best choice. I talk often with terrified newly diagnosed women about the need to make decisions that will help them sleep both tonight and five years from now. I sometimes remind women that they can proceed with a lumpectomy and radiation and, if the anxiety persists and feels impossible, they can come back for a mastectomy in the future. Over the course of my career, I have never known a woman who came back. As the months and years pass, the fear diminishes, and life resumes a normal rhythm.

    Yes, there is excellent breast reconstruction available, and we are blessed to have kind and competent plastic surgeons at BIDMC. None of them would ever say that a reconstructed breast is a perfect substitute for a natural one. There are scars, and there is little or no sensation, and there is a lot of surgery to get through. Most women are pretty happy with their reconstructed breasts, but some regret the decision and wish, at least, that they had taken more time to consider the choices.  Having cancer is a big deal, and having a mastectomy is a very big deal, and reconstructive surgery is a huge deal. Think about this carefully.

    Choose Life always. But choose treatment with careful conversation with your doctors and understanding of the realities and the accurate numbers.  Breast cancer is rarely a medical emergency, and women can take time to educate themselves, to process their feelings, and to make the right decision for life.