(unpublished) Survivors' Debate: The Past Decade in Ovarian Cancer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

We believe this paper will provide additional thoughts and reflections for discussion and   to augment that of Rini et al as published January 2007 - Peer Mentoring and Survivors' Stories for Cancer Patients: Positive Effects and Some Cautionary Notes[i].

Integral to this discussion is the magnitude and results of this select cancer e-patient community’s efforts. We portray the concerns and compassions of this ovarian cancer community and how they have stepped up and beyond traditional boundaries and borders.  As expressed by the e-Patient Scholars Team: “Some of the medical researchers who have attempted to evaluate these groups have projected their professionally-centered perspectives into the evaluation even though they may not apply, co-opting lay self-help models and developing professionally led therapy groups instead”.  e-Patients: How they can help us heal healthcare, the  e-Patient Scholars Editorial Team March 2007[ii]

Foundation:

Numerous cancer patient surveys over years have shown the value that cancer patients and their caregivers place on their relationships with their professional healthcare team. This discussion and this paper takes this as ‘a given’. While cancer care professionals are often able to switch gears when they return from the oncology clinical setting to a non-cancer environment, the same is not necessarily true for cancer patients/caregivers. Twenty-four/seven, patients, their families and very often their peer-supporters live, breathe and cope with their cancer. At the end of the day, they cannot always escape or ‘turn it off’. In particular, with the popularity and increasing respect (e-Patients: How they can help us heal healthcare 2007¹) afforded to e-group(s), many patients report signing onto the internet during the night only to find others online at the same time. In fact, most cancer patients will tell you that their nights are the worst because they do not have the daytime distractions to take them away from their suffering. No truer is this lived experience than the embodied lives of ovarian cancer women - a cohort who have been recognized as intelligent (e.g.[iii]^{, [iv], [v])},  well educated and often intimately involved in the lives of their fellow ovarian cancer colleagues.

Ovarian cancer is the 5^th most common cancer of women in Canada and the U.S. The numbers of deaths, however, that result from this cancer are exceedingly grim.

As supported by psycho-oncology research, there is a vast difference between what healthcare professionals perceive and what cancer patients actually know and live. There is new hope on the horizon; fast forward to a new way of thinking and action. This paper describes an approach that recognizes the intellect, abilities and skills of ovarian cancer women/caregivers and ensures that the former ‘disease that whispers’ is heard. It is also a concept of inclusion and the presentations are excellent.

This article will take the reader through the evolution, planning, funding and implementation of a vision that became a reality. As healthcare professionals, we may be challenged to meet the cancer communities’ existing parameters.

Background

Survivors’ Preparation for their Conferences - Online Anonymous Survey:

With past personal experiences in conference planning and intimate survivorship knowledge, the organizers (survivors) anticipated several key important issues relevant to the debate program. They conducted their own non-scientific survey (n=303) through an anonymous survey software program and one that was open to all including healthcare professionals. Responses primarily came from ovarian cancer survivors (78.9%) followed by family members (17.1%).

Table 1 Powerpoint Slide

A portion of these results were used in two areas of the actual Survivors' Debates as part of the Con side of the debate, as well as, part of the concluding remarks of the programs.

Planning:

Anger, frustration and a sense that little progress has been made in research, survival benefits and quality of life for women with ovarian cancer served as a catalyst for two women who met on an international listserv. Not only did they meet on a listserv and converse with this community for over 8 years, they also met in person at numerous medical conferences and survivor functions. In fact, they also met at survivor-organized annual weekend events that have been held and are planned in different North American cities through 2010. Acknowledging the serious health related issues that this community often experiences is a testament to their collective strength.

These organizers of what has been established as the ‘Survivors’ Debate’ were two women known as ‘go-getters’ who are passionate about informing others about this little known disease. Among their peers, in their individual communities and countries, they were seen, known and respected as strong advocates for women with ovarian cancer, their families and friends. The ovarian cancer community is without borders: regardless of occupation, color, values and beliefs, women are united based on their common illness.

In May 2007, a decision was made to present the past decade of researched and controversial ovarian cancer information via a debate format. The concept of a debate was not clearly understood by either the professional or the patient population. Some individuals were offended at the thought of someone daring to argue against whatever science might have achieved over the past decade. Perception, however, was not the reality as selected survivors volunteered to conduct the Con side of the debate. Although some healthcare professionals felt that a debate minimized the importance of a discussion of the ovarian cancer data, this was an apparent bias. As in any debate, both the Pro and Con side are presented and discussed. Among their peers, many survivors embraced the concept as proactive and progressive. There may be a reluctance to participate, fearing that what might be accomplished could be negated or perceived as invaluable. For those who questioned the term debate, or asked for a softer term, it soon became evident that debate was a mechanism used to fairly present what has been accomplished and what, sadly, has yet to be done (in the past decade) in this lethal women’s cancer. Regardless of any questioning and clarification, the debate term remained and was subsequently promoted and touted to take place in both Canada and the U.S. In the views of the two principle organizers, the term debate was an open, honest and transparent approach to describe the events.

Each ovarian cancer debater took a stand and reviewed the literature. Carolyn Benivegna, a 9-year U.S. survivor in treatment, presented the Pro side of the debate. Sandi Pniauskas, an 8-year Canadian survivor, introduced the Con side. The issues were hot and controversial. For example, has the survival of women changed/improved over the past ten years? Is the CA-125 effective? For whom, when and where? Does the research support the CA-125 as a screening tool to determine if a  woman may have ovarian cancer? Who are the specialists in the field of ovarian cancer? What are the benefits and barriers of genetic testing?

In the interim, everyone involved contacted their peers, support groups, cancer centers, oncologists, healthcare teams, treatment facilities, University affiliates, healthcare associations and ‘non’-cancer friends. The never-before held debates were scheduled and announced: one for Americans and one for Canadians. Geographic boundaries were to be crossed in the presentation of these data. Widespread communication and marketing ensued. A Blog (http://ovariancancerdebate.blogspot.com) was developed, the survey launched and venues selected. Videographers were booked in each city, the press/media notified and registration organized. Although sponsorship was sought, small amounts were contributed, but the survivors assumed the majority of costs. Nothing was going to stop the debates. Added to this were the flights of the women between cities, hotel expenses, and time off work (if applicable) for travel. Volunteer ovarian cancer survivors and friends worked at each event. Facilitators/Moderators included Dr. Yi Pan (currently in treatment) and Annamarie DeCarlo, both ovarian cancer survivors. U.K. artists, Denise Wyllie (ovarian cancer survivor) and Clare O'Hagan of Wyllie O Hagan – (http://www.wyllieohagan.com) volunteered as official artistic sponsors of the Survivors' Debate programs. A U.S. oncology nurse, Bridget Capo, and a Canadian oncology nurse, Pamela West, were invited to document this historical event.

The Debates

Five main topics were selected, studied and presented by each debater in 25-minute power point presentations. Herein, lies the essence presented under each of the five topics.

Awareness and Communication

This was a great way to begin the debates as all who were present (in both venues) could easily identify with the topic and arguments. The Pro side was quick to point out the benefits of the internet and various listservs that have become popular over the past decade. Fellow survivors have quick access to their peers for coaching, care and emotional support; to garner information, both research and anecdotal. Moreover, colleagues are able to question treatments and ask for more in testing, treating and trialing. Rini et al., (JCO, 2007) suggest that little is known about the impact and influence of peer-to-peer support. It would seem that the ovarian cancer women and community have a futuristic vision. Benivegna went on to review funding and investment in research of ovarian cancer and compared dollars invested 10 years ago with dollars invested in 2007. She indicated that Canada had also increased research dollars (NCIC, CIHI and CPAC cited). On the Con side, data were extrapolated from numerous studies and consumer reports to show that patient (consumer) awareness is limited and little has  been accomplished to demonstrate and prove real patient activism and involvement  (Consumerism & Controversy:  A Conversation with Regina Herzlinger⁷, Harvard, 2007[i]). Herzlinger suggests that more patient/consumer involvement might serve to make “the lives of people like you, in your day job, miserable”³. Pniauskas cited this reference, which served to encourage participants’ involvement.

Continuing with the Con voice, Pniauskas expressed that there was little change in the knowledge base of patients citing a 2007 Canadian study where 96% of women could not identify the most common symptoms attributed to ovarian cancer. Similarly, in the USA, 82% of women never talked with their physicians about their symptomatology or risk factors[ii]. 

Early detection

This remains a highly controversial topic for women who fear this disease or who are looking for a simple and accurate early detection test for ovarian cancer. Sadly, there is no screening test for ovarian cancer. Very few women are diagnosed in the early more optimistic stages of disease. Ovarian cancer statistics confirm that the majority of women are diagnosed in stage III or IV of this disease. As discussed through the Con presentation, guidelines (Dearking et al., 2007)[iii] suggest a poor performance “in identifying early stage disease, especially in premenopausal women, primarily due to lack of early markers and signs of ovarian cancer”. In favor of early detection is the controversial CA-125 test which as the Pro debater suggests is “difficult but not impossible” (Benivegna, 2007). Used along with other tests when symptoms are evident, early detection can improve survival rates. Benivegna acknowledges that more research is needed to find a reliable and valid screening tool. This was definitely a point in favor of

Pniauskas arguing on the Con side. In fact, Pniauskas’ presentation was quite simple and direct: 1997: None; 2007: None (no early detection test currently exists).

Survival

Over the past decade, both countries report that death rates for ovarian cancer have remained stable[iv]^,[v]. Survival rates were discussed along with slides depicting survival by stage, by evidence of residual disease, surgeon specialty (gynecologist versus gynecologic oncologist versus general surgeon), various chemotherapy regimens, and Intraperitoneal versus Intravenous chemotherapy. Benivegna and Pniauskas stimulated survivorship discussion, and encouraged attendees to become more involved in all aspects of their healthcare including the political level.

Genetics

Benivegna highlighted some known ovarian cancer causes with discussion on genetics and hereditary factors. Pniauskas outlined Gene mutations on BRCA1, BRCA2, MLH1, MSH2, MSH6 and other single genes and genetic syndromes[vi]. Lively debate followed with discussion of how a positive family history increases women’s and men’s risks and that hereditary predisposition are passed from the father’s as well as the mother’s genetic pools. Opinions were expressed that the patient is responsible to share her cancer diagnosis with family members, enabling them to assess and seek information regarding her/his own cancer risk. Benivegna noted that in the U.S., Myriad Genetics holds the patents to the BRCA genetic testing and has now instituted a pilot program in selected U.S. states. Cost and insurance issues were also discussed. In Canada, genetic testing is

primarily through doctor referral, with no out of pocket expenses. Controversy in both countries continues over issues of privacy, ethics, and cost.

Access to care

Healthcare system complexities in both countries often confound cancer patients at this most untimely and inopportune time of their diagnosis and illness. The avalanche of healthcare dominoes falls on the patient. Knowledge, information, costs, insurance issues, funding, and wait times, restrict many to timely or appropriate access to care. The debaters clearly presented the differences and similarities between the two countries’ healthcare delivery systems. Both Benivegna and Pniauskas identified many access to care roadblocks for patients, which sadly still prevail.

What is Next?

At each of the two debates, Dr. Yi Pan, one of the survivor/ moderators, effectively clarified and fielded questions from the audience and in turn directed them to each debater. The questions were varied and often validated the importance of the debates in that the women in the audience (sometimes with their partners), asked both basic and advanced level questions. Examples of questions ranged from “What is IP-Chemo?” to “What do you envision for the next 10 years in ovarian cancer care/management/ research?”

Debaters were able to quote from the literature/research and cite examples of real life patients’ challenges. Importantly, at all times, it was evident that compassion, integrity and confidentiality were constants throughout both events.

Audience/Participant Feedback Survey:
At both conferences, short feedback questionnaires were completed by participants and analyzed. Participants felt that the program length (2 1/2 hrs) was satisfactory (85.7%) while 11.9% felt the program was too short. Given the variety of backgrounds of audience participants, most indicated the program was not too technical in detail (76.2%). The Question/Answer section and the Pro/Con format style of the debates were consistently most valued. Open-ended questions of the survey permitted feedback for future conference planning (topics of interest) as well as individual reflections on the conference itself.
Responses were overwhelmingly positive as expressed verbatim by: Very informative in all areas. Like the Pro/Con comparisons; It reminded me again that ovarian is a complicated, involved cancer; It was helpful, yet disheartening, that issues re: ovarian are so scattered – we gotta fix that!; Good comprehensive coverage of current state; Genetic testing, issues raised in counseling – how can we HELP! (genetic counseling student); Great program! Please do one annually, we could all pitch in $$ to defray costs; I really enjoyed this debate….have never been to anything like it!. While these surveys were not intended to be scientific in nature, there is much to be gained by using these timely and current data to reflect the views and opinions of the ovarian cancer survivorship communities. Most importantly, these joint ventures crossed geographic borders and presented the reality in the day-to-day and future needs of ovarian cancer patients. In summary, the survivor-initiated survey anticipated general questions asked, took the pulse of the community and used the information to form a basis for sections of the debate. It also served as a foundation to facilitate future planning. Evaluations validated the benefit of blending clinical and experiential data.

Conclusion:

As this article is written, future debates have been confirmed. Enticing other survivors to take the Pro and Con side for purposes of awareness and education in this patient population is a significant challenge, given the stressors faced by these women. Not to be dismissed is this community’s enthusiasm for this program. It is apparent from these new survivor-led ovarian cancer debates that bold steps have been taken beyond watching and waiting. As healthcare professionals, we need to be asking how and when we can participate.

Acknowledgements 

The authors wish to thank survivors Dr.Yi Pan and Annamarie DeCarlo who so generously shared their time, talent and expertise in the delivery of the debates. We also thank Dr. Vincent Benivegna and Computer Mechanics for video assistance. The support and active participation of survivors, families and friends to ensure successful events was of significant value and greatly appreciated. All involved are gratefully acknowledged.

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[i] Consumerism and Controversy: A Conversation with Regina Herzlinger, Harvard July 24^th, 2007 http://content.healthaffairs.org/cgi/reprint/hlthaff.26.5.w552v1.pdf

[ii]   ^a) The National Ovarian Cancer Coalition Survey 2006 http://www.dfwovarian.org/gillette.html

         ^b) Harris/Decima Research Canada: http://www.newswire.ca/en/releases/archive/September2006/06/c3193.html

[iii] Amy C. Dearking et al, Mayo Medical School, Department of Obstetrics and Gynecology, and Division of Biostatistics, Department of Health Science Research, Mayo Clinic, Rochester, Minnesota.  How Relevant Are ACOG and SGO Guidelines for Referral of Adnexal Mass? Obstetrics & Gynecology 2007;110:841-848  2007 The American College of Obstetricians and Gynecologists

[iv] Canadian Cancer Society Statistics 2007: http://www.cancer.ca/vgn/images/portal/cit_86751114/36/15/1816216925cw_2007stats_en.pdf;

America Cancer Society Statistics 2007:

http://www.cancer.org/docroot/stt/stt_0.asp

SEER: Charts Incident/mortality: Surveillance, Epidemiology, and the End Results (SEER) Program and the National Center for Health Statistics  http://seer.cancer.gov/

[v] U.S. annual report to the Nation on the Status of Cancer published October 2007 http://www.interscience.wiley.com/cancer/report2007

[vi] Anil K. Rustgi, Dept of Medicine (Gastrointestinal), Dept of Genetics, and Abramson Cancer Center, University of Pennsylvania, Philadelphia, Pennsylvania  Genes & Dev. 2007 (October 19, 2007)  The Genetics of hereditary colon cancer21: 2525-2538 http://www.genesdev.org ;  Hereditary Ovarian Cancer Clinical Study Group (Risch/Narod et al) Oral contraceptives could be used as a means to prevent ovarian cancer in carriers of BRCA1 and BRCA2 mutations Lancet Oncol. 2007 Jan;8(1):26-34  http://www.thelancet.com/journals/lanonc/article/PIIS1470204506709834/abstract

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[i] Christine Rini et al “Peer Mentoring and Survivors’ Stories for Cancer Patients: Positive Effects and Some Cautionary Notes:  Journal of Clinical Oncology, Vol 25, No 1 (January 1) 2007 pp. 163-166 DOI: 10.1200/JCO.2006.08.8567

[ii] e-Patients: How they can help us heal healthcare, Tom Ferguson, MD and The e-Patient Scholars Working Group, Chapter 4 The Surprisingly Complex World of e-Communities White Paper 2007

http://www.e-patients.net/e-Patients_White_Paper.pdf

[iii] Yi Pan, MD  Discordance of clinical symptoms and electrophysiologic findings in taxane plus platinum-induced neuropathy  International Journal of Gynecological Cancer 17 (2), 394–397  Volume 17 Issue 2 Page 394-397, March/April 2007doi:10.1111/j.1525-1438.2006.00766.x

[iv] Pniauskas, S. Not qualified--a patient's perspective.

Gynecol Oncol. Gynecologic Oncology Volume 100, Issue 3, March 2006, Page 630 http://dx.doi.org/10.1016/j.ygyno.2005.11.045

[v] Pniauskas, S. Wait times in the real world. CMAJ. 2006 Jun 20;174(13):1872  PMID: 16785466