Pink Ribbon Blog

     In this first blog posting of the Pink Ribbon Survivors Network, I have collected my thoughts as to five themes that can explain why we have started this website and our motivation for its success.

        1.)  Online learning certainly represents the future of dissemination of information in our society.  Thus we set out to create three online libraries dedicated to issues of breast cancer survivorship from three separate perspectives:  the survivor, the primary healthcare provider, and the cancer care professional.

        2.)  Our project makes the assumption that interested, educated persons with issues, a mission in mind, or just curiosity, will pursue self-directed education.  In an open society, persons don't want to be given simple answers, but want to learn for themselves.  Our project believes that persons will pursue self-directed education, therefore our task is the organized assembly of three online libraries devoted to these three groups interested in learning more about breast cancer survivorship.

        3.) We have observed that the different cancer care professionals ( doctors, nurses, nurse navigators, and social workers) each maintain separate clinical literature.  This isolates each professional group's observations into separate "information silos," which are not shared for a common goal of serving breast cancer survivors.  Therefore, we have created an inter-disciplinary clinical library of breast cancer survivorship issues by drawing from the literature of these different cancer care professions.  We believe that a "synergy of ideas" will be possible when observations from the perspective of different cancer care disciplines are housed on a single online library resource.  

        4.)  It is clear that an organized breast cancer survivorship library for primary health care providers needs to be available.  We note the increasing complexity of medical and psychosocial issues regarding breast cancer survivorship.  Additionally, we recognize that oncology professionals will be transitioning more care of breast cancer survivors to their primary care colleagues.  Therefore, our goal is to create a concise and comprehensive online survivorship library for the primary health care provider.  Standards of follow up care, and nationally recognized Guidelines will be an important feature of this library.

       5.)  We wish to provide a service to society as professionals and community activitists in a non-profit organization.  We pledge to avoid bias in our information, to prevent commercial interests from influencing our content, and to protect our users  from solicitation.  At a time when women play a central role in individual families and in society in general, we recognize the importance of improving the lives of breast cancer survivors through online education.

       Thank you for being part of this project through your use of this online resource.

Rob Fisher, MD  Co-Founder and  Organizational President, The Pink Ribbon Survivors Network (Rob@PinkRibbonSurvivorsNetwork.org), February, 2013.

          


"How to Be a Friend to a Friend Who's Sick"

"How to Be a Friend to a Friend Who's Sick" is a newly published book filled with insight and observations from a writer who's lived through her own experience with breast cancer. 

"So whom am I to write this book? Very simply, I'm someone has-whoops who had - cancer.  I'm also a woman with lots of friends and a writer who became fascinated by the disconnect between how people treat sick people and how sick people wish to be treated." 

Online tools for BRCA Decisions

There has been so much in the news lately about breast cancer and genetics. There is lots of discussion about decisions women are making based on the available testing for the BRCA gene mutations. Some people are deciding to have prophylactic surgeries or to manage and monitor their risks in different ways. It can be very confusing and overwhelming for someone who may have heard that they or a family member has been found to have that genetic mutation.  

The Impact of Jolie's Story

Angelina Jolie’s May 14 op-ed in the New York Times has generated much media attention regarding breast cancer and the difficult decisions women must face when confronted with cancer (see Laurie Lahr’s post from June 7). However, there are several other aspects of the media coverage that I have been thinking about during the past few weeks. Gayle Sulik, a medical sociologist and founder of The Breast Cancer Consortium, recently published a guest blog in Scientific America (May 20) that notes that the media’s emphasis on awareness and empowerment “easily commercializes almost every aspect of the disease (i.e., awareness, risk, prevention, diagnosis, treatment, survivorship, research, support – all propped up with a seemingly endless array of pink products and medical interventions.).” Jolie’s op-ed encourages women to learn about their risks and options and not be immobilized by fear, while Sulik points out that, “risk itself is a valuable commodity.” Jolie’s story is indeed one of her own personal empowerment; it is also a very high profile story with the potential to enhance the commodification of women’s fears about breast cancer, especially in a society that idealizes “perfect” bodies. There is money to be made on women’s fears and their desires to achieve societal standards of beauty - standards which are exemplified by Jolie.


Food for Thought: Food and Thought

FOOD:  Nearly every person facing cancer gives consideration to modification of their current diet, assuming that prior dietary patterns were somehow responsible for the development of cancer.

THOUGHT:  First: Can we learn more of the cognitive issues that breast cancer treatment causes, to better understand this issue.       

                   Second:  How does having breast cancer affect a woman's relationship with her teenage daughters?

Let's look at recent additions to the Pink Ribbon Survivors Network online libraries for more insight. 

 

Breast Cancer: Genetics, Ethics and Survivorship

Watching the local news this past month and reading entertainment magazines has given me much food for thought, as it relates to breast cancer survivorship. This past month, actress Angelina Jolie revealed that she had had a prophylactic double mastectomy. She made this very difficult and ethical decision based on a genetic test (BRCA1) that indicated that would be at a high risk for developing breast cancer (87% chance) or ovarian cancer (54% chance). Angelina Jolie has a strong family history of both breast cancer and ovarian cancer. Another recent story on CBS news was related to breast (BRCA) gene mutations that are more common in black women with breast cancer. There was a study presented at the American Society of Clinical Oncology conference in Chicago this past week that found one-fifth of these women have genetic (BRCA) mutations.

Husbands on the journey of breast cancer

     Everyone handles the diagnosis of breast cancer differently and husbands can be hit especially hard.  Many men are raised to be the person in the family who "fixes" things.  A breast cancer diagnosis can be one of many steps, in a survivor's journey that he cannot fix or make go away.

Journal Club, Part 2

     I am back for Part 2 of my essay on a Journal Club.  I want to discuss how a peer-reviewed study is designed, so anyone who is interested can decide if a study has any value to their particular situation.  Remember, many great articles out there that are not peer-reviewed come from reliable sources.  My purpose for writing is to try to "de-mystify" some of the code in academic publications.

Couples......And the Challenges of Facing Cancer, Together

"Cancer requires a whole new set of skills at a time when most of us are depleted, distracted, and scared."  This quote from Penn State University Health Psychologist,  Dan Shapiro, PhD , is taken from a review reflecting on the importance of his message in Jane Brody's Health column in The New York Times on May 28th.  The article, entitled, "Battling Cancer Together," describes his personal and marital experience with cancer when he and later his wife faced cancer.  Dr. Shapiro's new book, "And in Health: A Guide for Couples Facing Cancer Together," is just recently published and can be found on the Pink Ribbon Survivors Network Recommended Reading section of the Curriculum for Recovery Library.