Wednesday, August 24, 2011
Exclusive Interview: Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna by Dr. Hsien-Hsien Lei (repost)
Eye on DNA | How will it change your life?
Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna
2 countries (Detroit/Toronto) same agenda/format - Survivors' Debate: The Past Decade in Ovarian Cancer
Survivors’ Debate: The Past Decade in Ovarian Cancer
Sheraton Hotel, Novi, MI
Sat. October 27th, 2007
Metropolitan Hotel, Toronto, ON
Sat. November 3, 2007
10:00 am - 12:30 pm
Note: apologies for selected formatting errors
February 5th, 2008
THE PAST DECADE IN OVARIAN CANCER
Authors: P.J., Benivegna, C., Pniauskas
Carolyn Benivegna, Ovarian Cancer Survivor, Novi, Michigan, U.S.;
Sandi Pniauskas, Ovarian Cancer Survivor, Whitby, Ontario, Canada
corresponding author email@example.com
Survivors’ Debate: The Past Decade in Ovarian Cancer
Tuesday, September 04, 2007
Authored by: Sandi Pniauskas
Where have we been and where are we going? Ovarian Cancer is not a new disease and in fact has been traced back to Egyptian times. The efforts of research, education, awareness, and access to care have gained some momentum, but they have taken a predictable path and hit many a roadblock for several reasons. With the benefits of international grassroots level survivorship amongst us, we consistently discuss where this disease has been and where it is going. Therefore, we feel it is time for open public discussion about this disease and the importance, including those of genetic predispositions - men and women. So, the question is simply this: as survivors, how can we move these behind-the-scenes discussions to open forums?
While preparing research for inclusion in a presentation concerning cancer patients’ voices in healthcare, Sandi Pniauskas took special notice of a paper published by an expert panel that included the statement, "Patients or their representatives should not attend the MCC to ensure unbiased case review." (Multidisciplinary Cancer Conference report dated June 2006 1.) While it would be inexcusable to take this singular quote as the ‘rule du jour’, this philosophy and others similar to it are prevalent themes in both private perception and in published literature. We can be thankful for more enlightened views such as those published in the journal of Health and Social Policy, Buffalo, New York 3 that state: “The activists' efforts wrested control of “authoritative knowledge” that had once been the sole domain of the “experts” with advanced medical training. They used this knowledge to empower “average” people with medical information…to promote self help and engage in civil disobedience, which led to changes in healthcare delivery.”
Fancy words, but what does this mean to you and me? At first glance, it seems these statements are being critical of the importance and of the relationships that cancer patients, their families, and friends have with respect to the care they receive from their healthcare professionals. Nothing is further from the truth, in fact. It is simply that by being informed and proactive, women with ovarian cancer along with their families and caregivers have recognized the value and importance of conducting their own critical analysis. Most importantly, it shifts the focus onto the human elements and burdens of suffering that we experience each day in our communities. We have learned much over the years. Average, everyday citizens are taking active roles in their treatments and educating themselves about this disease. In our view, and through the course of bringing light to this disease and those living with it, it has become obvious that there are no “average” ovarian cancer women. “Average”, in fact, is only a temporary state.
As those living with this disease, we dream of what the future holds in terms of early detection, education, research, treatment, and a cure. When you have a dream - and in the face of typical power barriers - what then? The answer is that you change tactics to whatever means necessary to fulfill that dream.
This dream has evolved in the form of two ovarian cancer conferences: one in Novi, Michigan and another in Toronto, Canada entitled “Survivors’ Debate: the Past Decade in Ovarian Cancer” 2. It is an effort by proactive and knowledgeable ovarian cancer survivors, coupled with supporting oncology nurses. It is with the understanding, that the conferences are fully inclusive, but the focus is cancer patients and survivors, their families and friends. There are two locations in two countries because our issues are the same: access to care, awareness, early detection, survival rates and genetics. The directive and focus is to offer a place to exchange of ideas honestly and openly without judgment or bias.
Patients need an environment where they feel encouraged to discuss the many difficulties they face. Sometimes, it is very difficult to find that place - a place without fear of retribution, criticism, or dismissive attitudes. Patient-to-patient discussion/counseling offers this environment. It allows for discussion of such topics as things that work and things that do not. As a result of looking for this arena of discussion, the Survivors’ Debate has been born - how exciting! Healthcare settings just do not currently lend themselves to the dialogue that is needed. Albeit, we would all hope to appreciate and accept this unmet need. In fact, these forums already exist extensively, but not typically in a public and open format.
Our truth is simple, but for some, the message is difficult. The message has not and is not being heard, so what does this say about the past decade in ovarian cancer? It says that the past has been about consensus building and what does or does not work for us. Today, and for the future, it is about patients speaking for themselves and not by themselves. It is not about ‘empowering’ patients, but it is about personal permission to obtain that power. It is about giving recognition to the power, the intellect and the abilities of the individual. It is with a focus on creating a public force to expedite change, all which starts with communication. It is always interesting to note that through years of survivourship in our own networks, a lack of effective communication has never existed. While women with ovarian cancer and their families are doing the best that they can to survive, a plethora of funds is being recirculated each day, so how can we move forward?
Our ovarian cancer survivor connections and bonds have formed through the years by enduring extreme challenges and personal losses. The only bias is the bias to endure and to survive to the best of our abilities, not only as individuals but importantly also as a community. To be very blunt, this includes much silent suffering. The fulfillment of this dream is now taking place - the dream of our patients’ voices in healthcare and in a public forum is coming to fruition. We are on the cusp of being able to highlight our international ovarian cancer community with its 8 and 9 years survivorship and explain why it works. We are going to be able to explore the variety of reasons why what is needed does not get translated into caregiving. It should in fact, show those problems are healthcare system malfunctions as opposed to, in our view, system issues. It is long past due that we take our real issues into a public forum and we encourage everyone to participate. We plan to make some long overdue noise at these debates about ovarian cancer, and we envision that these two scheduled events are only the beginning of a completely new trend in ovarian cancer activism.
We have encouraged participation and inclusion of all. The authors of this article think back to the play ‘Wit’ and how medical professionals, in some cases, felt ostracized by the message of that particular art form. We hope, in hindsight, that we have, by today, learned the lesson that ‘Wit’ was about the patient journey as a whole and its shortcomings from both patient and professional perspectives.
At the time of this publication, very little funding support for these conferences has been available. Virtually all of the funding is being provided solely by the survivours.
1. F. Wright, C. De Vito, B. Langer, A. Hunter, and the Expert Panel on the Multidisciplinary Cancer Conference Standards, Special Report, Program in Evidenced Based Care - a Cancer Care Ontario Program http://www.cancercare.on.ca/pdf/pebcmccf.pdf
2. Survivors’ Debate: The Past Decade in Ovarian Cancer (registration/information/poll): http://ovariancancerdebate.blogspot.com/
3. J Health Soc Policy. 2006;21(3):55-69, School of Social Work, Buffalo, NY Keefe RH, Lane SD, Swarts HJ. 2006 From the bottom up: tracing the impact of four health-based social movements on health and social policies.