Exclusive Interview: Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna by Dr. Hsien-Hsien Lei (repost)

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 Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna

by Dr. Hsien-Hsien Lei

(unpublished) Survivors' Debate: The Past Decade in Ovarian Cancer

Note: apologies for selected formatting errors

February 5^th, 2008

SURVIVORS’  DEBATE:

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 sandipn@sympatico.ca

Introduction:

original (unsanitized/unpublished version)

Survivors’ Debate: The Past Decade in Ovarian Cancer

Tuesday, September 04, 2007

Authored by: Sandi Pniauskas

                      Carolyn Benivegna

                      Tracy Gorden

http://ovariancancerdebate.blogspot.com/

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.

 

authors: Carolyn Benivegna*, Tracy Gorden*...(*with us in spirit) "Giving VOICE to Ovarian Cancer Survivors" (previously unpublished)

Sandi's notes and background on this article: 


A few years ago, I was asked to write a paper on ovarian cancer specific to the Survivors' Debate. Carolyn and Tracy were enlisted to co-author the article - a team approach for those who know best. This was the final version which went unpublished. 
It went unpublished mainly because editorial requests virtually 'sanitized' the article to the point where our message became close to irrelevant. At that point, I declined our involvement. 
On behalf of my - our friends, Carolyn and Tracy, and with the beneficial advances brought on through social media, here is the final and unedited version. 
 

Giving VOICE to ovarian cancer survivors

Survivors debate the issues

Authors:  Carolyn Benivegna*, Tracy Gorden*,  Sandi Pniauskas 
(*with us in spirit)

During her research for a presentation concerning cancer patients’ voices in healthcare, Sandi Pniauskas took special notice of a paper published by an expert panel that included the following statement: "Patients or their representatives should not attend the Multidisciplinary Cancer Conference to ensure unbiased case review"  (Report dated June 2006, www.cancercare.on.ca/pdf/pebcmccf.pdf). 

While it would be imprudent to take this singular and remarkable quote as the “rule du jour,” this philosophy, and others similar to it, are prevalent in both private perception and in published literature on cancer survival.

We can be thankful for more enlightened views, such as this example from the Journal of Health and Social Policy that, instead, celebrates the voices and contributions of (non-medical) health educators and activists:  

            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 (2006;21(3):55-69).

As ovarian cancer survivors we have learned much over the years.  Average, everyday citizens are taking active roles in their treatments and educating themselves about this deadly disease.  Yet in our view, and through the course of shedding light on this disease and the experiences of those living with it, it has become obvious that there is no such thing as an “average” survivor.

Ovarian cancer is not a new disease; in fact, it has been traced back as far as Egyptian times.  Advancements in research, education, awareness and access to care have gained some momentum, but they have also hit many roadblocks.  As ovarian cancer survivors  with international grassroots connections to, and support from, other survivors  we regularly discuss where this disease has been, and where it is going.  We now feel it is time to move these behind-the-scenes discussions to open forums. 

By being informed and proactive women with ovarian cancer, we have recognized the value and importance of conducting our own critical analysis.  Most importantly, we have learned to shift the focus onto the human elements and burdens of suffering that we experience each day in our communities.  

Creating a public forum for ovarian cancer survivors

As those living with this disease, we dream of what the future holds in terms of early detection, education, research, treatment and a cure. This dream has evolved in the form of organizing two ovarian cancer conferences for October 2007 -- one to be held in Novi, Michigan (US) and another in Toronto, Ontario (Canada) --  both entitled, “Survivors’ Debate: The Past Decade in Ovarian Cancer.” 

These public meetings are the result of a collaborative effort by proactive and knowledgeable ovarian cancer survivors with supporting oncology nurses. They will take place with the understanding that they will be fully inclusive – everyone is welcome -- but that the focus will remain on the experiences, needs and concerns of cancer patients and survivors, their families and friends.

The conferences will take place in 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 of both conferences is to offer a place to exchange 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 space -- a place without fear of retribution, criticism or dismissive attitudes. Patient-to-patient discussion and counseling offers this environment. It allows for in-depth dialogue on a variety of topics that detail what strategies work for survivors and their families and what is not effective. Healthcare settings just do not currently lend themselves to foster the dialogue that is needed for survivors that this new forum provides.

However, the conferences will also focus on creating a public force to expedite change, which can only start with communication.  Born from need – an arena for discussion for ovarian cancer survivors by survivors -- the “Survivors’ Debate” has taken form. 

But while the conferences are about patients speaking for themselves they are not speaking by themselves. With this new forum for dialogue, debate and discussion, we can highlight the detailed knowledge and expertise of our international ovarian cancer community with almost a decade of experience behind us, and explain why, as a community, we work. But we will also be able to explore the variety of reasons why what is needed by survivors and their friends and families is not currently being translated into caregiving.

Our ovarian cancer survivor connections and bonds have formed through the years by enduring extreme challenges and personal losses. The only bias we have as survivors is the bias to endure and to survive to the best of our abilities, not only as individuals but, importantly, as a community. To be very blunt, previously this has included much silent suffering.

It is long past due that we take our real issues into a public forum and 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.

For more information on the Survivors’ Debate: The Past Decade in Ovarian Cancer, visit: http://ovariancancerdebate.blogspot.com

 

Side-bar:

Ovarian cancer

Ovarian cancer is a serious and under-recognized threat to women's health which kills more women than all of the gynaecologic cancers combined.  The lifetime risk of contracting ovarian cancer is one in seventy.  Ovarian cancer is very treatable when caught early, but the vast majority of cases are not diagnosed until too late, which means that while it is not as common as some other cancers, it remains a woman’s cancer with a poor survival rate.

Unfortunately, an early detection test still remains elusive and contrary to public perception, the PAP test is not a screening test for ovarian cancer. Efforts to diagnose ovarian cancer is through a combination of: tumor marker test (called the CA125), a bimanual pelvic/rectal exam and transvaginal ultrasound. Actual confirmation of the diagnosis of ovarian cancer is confirmed with surgery and pathology reports (eg. Laboratory tests on tissues specimens). When ovarian cancer is caught before it has spread beyond the ovaries 80-90% of women will survive five years. When diagnosed after the disease has spread, the chance of five-year survival drops to approximately 20-30% or less.

Signs and symptoms

Symptoms of ovarian cancer are nonspecific and mimic those of many other more common conditions.  However, as a result of the original work in 1999 of Cindy Melancon , RN (who died of ovarian cancer in 2003) and Dr Barbara Goff, it has now been established that both early and advanced stage ovarian cancer do have  recognizable symptoms. 

A consensus expert panel convened earlier this year concluded that the following four symptoms are much more likely to occur in women with ovarian cancer than women in the general population:

* Bloating;

* Pelvic or abdominal pain;

* Difficulty eating or feeling full quickly;

* Urinary symptoms (urgency or frequency).

Several other symptoms have been commonly reported by women with ovarian cancer, as well; these symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities.  A woman should consult with a health care professional if any of these symptoms persist or feel abnormal.

What you can do

* Understand your family history (e.g., ovarian, breast, colorectal cancer,endometrial cancers);

*  Educate yourself and understand ovarian cancer as it relates to your specific diagnosis;

*  Communicate your concerns with your healthcare professional;

*  Recognize and support other ovarian cancer women/families in your community;

*  Join an online support or face-to-face support group;

*  Join a cancer organization or a program in your community and/or hospital. 

Ovarian cancer is not a silent disease – speak up and speak out

Have a look:

ACOR – Ovarian Cancer Mailing List (ASSOCIATION OF CANCER ONLINE RESOURCES

http://www/acor.org

NCI (NATIONAL CANCER INSTITUTE - U.S.)

http://www.cancer.gov/cancertopics/types/ovarian

MEDLINE PLUS

http://www.nlm.nih.gov/medlineplus/ovariancancer.html

CLINICAL TRIALS DATABASE

http://clinicaltrials.gov/

Fox Run makes debut at parade - Paul Benivegna (Carolyn) in the news

"...Did that create a chain reaction! Fox Run’s Paul Benivegna, a Korean War veteran who chairs the community’s hobby shop, got to work designing a veterans-themed float..." cont'd

2008 September CANO Survivors' Debate Presentation - authors Carolyn Benivegna & Sandi Pniauskas

primary authors:  Carolyn Benivegna (in spirit) & Sandi Pniauskas 

clicking above will bring you directly to the presentation,

or,
request a copy of the pdf presentation file via: sandipn@sympatico.ca

2007 (comparing cancer symptoms) - slide excerpt Benivegna/Pniauskas "Survivors' Debate: The Past Decade in Ovarian Cancer"

Click on chart to enlarge for better viewing