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.

          


Share the Breast Cancer Journey: Become a Research Partner

        Are the symptoms and daily life of a breast cancer survivor worthy of study and reporting?  Does the medical community really care what each survivor is experiencing?  Now the answer is yes- those findings of daily life are important to the understanding of breast cancer survivorship.  Each person's experiences are needed to understand what life is really like for breast cancer survivors......

Domus Pacis- Helping Survivors and their family spending time to heal in a mountain retreat setting

Domus Pacis -literally is translated as "House of Peace" in Latin.  The organization that runs this program provides a patient and their family a mountain retreat setting for time together on their collective cancer journey.  In this mountain retreat setting, new memories can be made, and time to heal is provided in a Colorado mountain setting.

Building and Restoring Physical Wellness after Breast Cancer

       There is a physical toll that most women encounter through their course of active breast cancer treatment.  Most survivors are interested in learning about their Recovery. Fortunately, an upcoming program will provide some practical advice.

Integrative Therapies Should be Considered during Breast Cancer Therapy

      Integrative Therapies have an important role in treating common problems that Survivors face during and after breast cancer treatment.  I call your attention to a recent review of their application for specific issues in breast cancer care.

Why do patients take the blame?

    I have often found the language of cancer professionals upside down and confusing.  Early in one's oncology career, we learn to describe a patient's clinical course with terms like: " She failed first line therapy,"  and "Her disease was refractory to the best available therapy."  We blame the patient for "failing,"  when it is the medical profession to blame for "failing" to pick a more successful course of therapy for the patient, in fact.  

     I am especially annoyed at one oncology specialty that includes in its treatment planning:  "Disposition plans:"   What does that mean?  Are we "disposing of the patient??? I thought I went into the medical field to care for the patients who came to see me, and to provide ongoing long-term follow up for them.  No wonder that laypersons become suspicious of the medical profession.....

"Writing Your Way to Happiness"

     I have known of the benefits of personal journaling for a number of years.  In the clinical literature, it is often referred to as "Cancer Journaling."  A recent article in a national newspaper provides considerable insight as to the merits of this tool.

A Resolution, good at New Year's and beyond.....

Bear with me as I bring two separate ideas forward to make my point in this blog,

       The first idea doesn't have anything to do with any cancer, its an example of making plans to enjoy a good moment in life, involving a bottle of wine....

       The second idea comes from my career encouraging patients and their families during their cancer treatment,  to plan for a better day ahead.....

You may already see where this writing is going, so I hope that you do bear with the rest of the piece.....

Employment Issues and Breast Cancer Survivorship: in Need of Clinical Data:

      Breast cancer survivors face many challenges at various stages of their cancer diagnosis.  Upon completion of active treatment, survivors may face unexpected challenges including struggles with work and employment.  Although there has been an increase in breast cancer advocacy, there is a scarcity of research about surviorship and life post-treatment.  Employment and work related functioning are topics rarely studied.  Given the high rates of survivorship, advocacy for research about life after treatment is crucial.