repost: what words cannot say.....HOPE and ovarian cancer

Presentation: rebuttal author: Sandi Pniauskas (debate) - the "Us" in Ovarian Cancer and Us

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Selected References 'CON' Presentation: Sandi Pniauskas - Ovarian Cancer Survivors' Debate (previously unpublished)

References: slides 1-3
(Note: subject to formatting issues/possible link errors due to time lapse noting that research references remain constant over time - also can be viewed via pdf file previously published)

CA 125

Karen Eagle, Jonathan A. Ledermann Tumor Markers in Ovarian Malignancies The Oncologist, Vol. 2, No. 5, 324–329, October 1997
http://tinyurl.com/2wyvtf
Elvira M. Davelaar et al, Comparison of seven immunoassays for the quantification of CA 125 antigen in serum Jnl Clinical Chemistry.
1998;44:1417-1422. http://www.clinchem.org/cgi/content/full/44/7/1417
Maurie Markman The Role of CA-125 in the Management of Ovarian Cancer The Oncologist, Vol. 2, No. 1, 6-9, February 1997
http://tinyurl.com/2gdsvk
Trope C, et al. Adjuvant chemotherapy for early-stage ovarian cancer: review of the literature. J Clin Oncol. 2007 Jul 1
0;25(20):2909-20.
Nayanah Siva Screening for Ovarian Cancer is Not Effective The Lancet Oncology Vol 8, Issue 9, Sept 2007; p764
TI Goonewardene, MR Hall, and GJ Rustin Management of asymptomatic patients on follow-up for ovarian cancer with rising CA-125 concentrations. Lancet Oncol, September 1, 2007; 8(9): 813-21
Mohan K. Tummala, MD William P. McGuire, MD Ovarian Cancer, (Editorial) CA-125 Addiction, and Informed Confusion: Much Ado About Less
Journal of Clinical Oncology, Vol 25, No 24 (August 20), 2007: pp 3570-3571 DOI: 10.1200/JCO.2007.11.9735
ER Woodward, et Multicentre/Country Annual surveillance by CA125 and transvaginal ultrasound for ovarian cancer in both high-risk and population risk women is ineffective BJOG October 2007 http://www.blackwell-synergy.com/doi/abs/10.1111/j.1471-0528.2007.01499.x
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 by The American College of Obstetricians and Gynecologists
M.L. Hopkins et al Cancer Antigen 125 in ovarian cancer surveillance: a decision analysis model Current Oncology V. 14, No. 5 2007

Awareness/Communication:

 Latini DM, et al CaPSURE Investigators.; discussion 831-2. The relationship between anxiety and time to treatment for patients with prostate cancer on surveillance J Urol. 2007 Sep;178(3 Pt 1):826-31; Ian M. Thompson and Donna P. Ankerst Prostate-specific antigen in the early detection of prostate cancer CMAJ Review - June 19, 2007; 176 (13). doi:10.1503/cmaj.060955.\
Tom Ferguson, MD with the e-Patients Scholars Working Group e-patients: how they can help us heal healthcare supported by Robert Wood Johnson Foundation http://www.e-patients.net March 2007
Canadian Health Care Consensus Group: A Call to Action on Health Care Reform 2007
http://www.aims.ca/inside_chccg.asp?cmPageID=396#chno3
2007 Health Promotion Conference (International) Closing the Knowledge to Action Gap: Is Health Promotion and Health Education on the Verge of a Breakthrough? http://www.ohpe.ca/ebulletin/index.php?option=com_content&task=view&id=8690&Itemid=78
Calhoun et al A comparison of ovarian cancer treatments analysis of utility assessments of ovarian cancer patients, at-risk populations, general populations and physicians Gynecologic Oncology 2004; 93:164-9 55

Access to Care:

S. Workman and O.E. Mann, QEII Health Science Centre, Halifax, Nova Scotia, Canada ‘No control whatsoever’: end-of-life care on a medical teaching unit from the perspective of family members 2007 Association of Physicians of Great Britain and Ireland March 12, 2007 ISSN 1460-2393
AR Kahn et al, Ovarian Cancer Treatment Patterns and Outcomes (OCTPO) Study, Factors Associated with Treatment Received for Ovarian Cancer , NAACCR Annual Conference Detroit, Michigan June 5, 2007
SM Crawford, Dr SM Crawford , Dept Medical Oncology and Gynaecology, Airedale General Hospital, West Yorkshire,, UK. Centralisation of
services for the management of ovarian cancer: arguments against BJOG: Intl Journal of Obstetrics and Gynaecology Vol 114 Issue 10
October 2007
Access to Care: 2-3
• S. Workman and O.E. Mann, QEII Health Science Centre, Halifax, Nova Scotia, Canada ‘No control whatsoever’: end-of-life care on a medical
teaching unit from the perspective of family members 2007 Association of Physicians of Great Britain and Ireland March 12, 2007 ISSN 1460-2393
• AR Kahn et al, Ovarian Cancer Treatment Patterns and Outcomes (OCTPO) Study, Factors Associated with Treatment Received for Ovarian Cancer , NAACCR Annual Conference Detroit, Michigan June 5, 2007
• SM Crawford, Dr SM Crawford , Dept Medical Oncology and Gynaecology, Airedale General Hospital, West Yorkshire,, UK. Centralisation of services for the management of ovarian cancer: arguments against BJOG: Intl Journal of Obstetrics and Gynaecology Vol 114 Issue 10 October 2007
•Richard G. Moore , Program in Women's Oncology, Depart Obstetrics and Gynecology, Women and Infants' Hospital, Brown University, Providence, RI How Do You Distinguish a Malignant Pelvic Mass From a Benign Pelvic Mass? Imaging, Biomarkers, or None of the Above JCO, Vol
25, No 27 (Sept 20), 2007: pp. 4159-4161 http://jco.ascopubs.org/cgi/content/full/25/27/4159
•Trimbos JB, Vergote I, Bolis G, Vermorken JB, Mangioni C, Madronal C, et al. Impact of adjuvant chemotherapy and surgical staging in early-stage ovarian carcinoma: European organisation for research and treatment of cancer-adjuvant chemotherapy in ovarian neoplasm trial.
J Natl Cancer Inst 2003;95(2):113–25
Kurt Christopher Giede*, Katharina Kieser, Jason Dodge, Barry Rosen ,University of Toronto, Canada Who should operate on patients with ovarian cancer? An evidence-based review ; Maurie Markman, Department of Gynecologic Medical Oncology, The University of Texas M.D. Anderson Cancer Center
Houston, TX Concept of Optimal Surgical Cytoreduction in Advanced Ovarian Cancer: A Brief Critique and a Call for Action JCO Comments and Controversies Vl 25 No. 27 September 20 2007
• Chan et al; Influence of the Gynecologic Oncologist on the Survival of Ovarian Cancer Patients Obstetrics & Gynecology 2007;109:1342-1350
© 2007 by The American College of Obstetricians and Gynecologists
• The Commonwealth Fund 2006 International Comparison: Access & Timeliness
http://www.commonwealthfund.org/snapshotscharts/snapshotscharts_show.htm?doc_id=409110
• L. Elit et al; Use of systemic therapy in women with recurrent ovarian cancer – Development of a national clinical practice guideline
Gynecologic Oncology doi: 10.1016/j.gyno.2007.03.025

Survival:

• Russell J. Schilder, MD, Matthew P. Boente, MD, Benjamin W. Corn, MD, Rochelle M. Lanciano, MD, Robert C. Young, MD, and Robert F. Ozols,
MD, PhD The Management of Early Ovarian Cancer Dept of Medical Oncology, Surgical Oncology, Radiation Oncology, Division of Medical
Science, Fox Chase Cancer Center, Philadelphia Feb 1995 http://www.cancernetwork.com/journals/oncology/o9502c.htm
C. Trope, et al, The Norwegian Radium Hospital, Oslo and Trondheim, Norway, Lund, Linkoping, Sweden and Odense, Denmark. Randomized
trial on adjuvant carboplatin versus no treatment in stage I high risk ovarian cancer by the Nordic Ovarian Cancer Study Group (NOCOVA) 1997
http://www.asco.org/prof/me/html/abstracts/gync/m_1260.htm56

Additional References:

•Ovarian Cancer: Screening, Treatment, and Followup. NIH Consensus Statement 1994 April 5-7;12(3): 1-30
http://www.medscape.com/govmt/NIH/1999/guidelines/NIH-ovarian/nih.ovarian-03.html
• AM Gonzalez-Angulo et al; Trends for inflammatory breast cancer: is survival improving? Oncologist, August 1, 2007; 12(8): 904-12., The University of Texas M. D. Anderson Cancer Center
• Charts Incident/mortality: Surveillance, Epidemiology, and the End Results (SEER) Program and the National Center for Health Statistics
http://seer.cancer.gov/
• H. E. Lambert et al, A randomized trial of five versus eight courses of cisplatin or carboplatin in advanced epithelial ovarian carcinoma* A North Thames Ovary Group Study Published Feb. 1997 http://annonc.oxfordjournals.org/cgi/reprint/8/4/327.pdf
• Dr William G. McGuire, Editorial Is It Time for Some New Approaches for Treating Advanced Ovarian Cancer? JNCI 2007
http://jnci.oxfordjournals.org/cgi/content/full/98/15/1024
David S. Alberts, A Unifying Vision of Cancer Therapy for the 21st Century ; JCO, Vol 17, No 11S (November Supplement), 1999: 13-21
http://jco.ascopubs.org/cgi/content/full/17/suppl_1/13#R8-0013
A Gompel, G Plu-Bureau : Correspondence: Ovarian cancer and hormone replacement therapy , The Lancet 2007; 370:932
•DOI:10.1016/S0140-6736(07)61436-6

Genetics:

Narod SA, Risch H, et al; .Oral contraceptives and the risk of hereditary ovarian cancer. Hereditary Ovarian Cancer Clinical Study Group N Engl J
Med. 1998 Aug 13;339(7):424-8 (full text article: http://content.nejm.org/cgi/content/full/339/7/424)
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
PM. Steven Piver Review and Commentary The Oncologist: Prophylactic Oophorectomy: Reducing the U.S. Death Rate from Epithelial Ovarian Cancer. A Continuing Debate The Oncologist, Vol. 1, No. 5, 326–330, October 1996
http://theoncologist.alphamedpress.org/cgi/content/full/1/5/326
Hermsen et al, No efficacy of annual gynaecological screening in BRCA1/2 mutation carriers; an observational follow-up study , British Journal of Cancer (2007) 96, 1335–1342. doi:10.1038/sj.bjc.6603725 www.bjcancer.com Published online 10 April 2007
P. J. C. Bresser et al; Who is prone to high levels of distress after prophylactic mastectomy and/or salpingo-ovariectomy? Annals of Oncology Advance Access originally published online on July 28, 2007 Annals of Oncology 2007 18(10):1641-1645; doi:10.1093/annonc/mdm274
2006 Lori d’Agincourt-Canning Genetic Testing for Hereditary Breast and Ovarian Cancer: Responsibility and Choice QUALITATIVE HEALTH
RESEARCH, Vol. 16 No. 1, January 2006 97-118 DOI: 10.1177/1049732305284002 in part supported by BC Cancer Agency
P. J. C. Bresser et al; Who is prone to high levels of distress after prophylactic mastectomy and/or salpingo-ovariectomy? Annals of Oncology Advance
Access originally published online on July 28, 2007 Annals of Oncology 2007 18(10):1641-1645; doi:10.1093/annonc/mdm274
2006 Lori d’Agincourt-Canning Genetic Testing for Hereditary Breast and Ovarian Cancer: Responsibility and Choice QUALITATIVE HEALTH
RESEARCH, Vol. 16 No. 1, January 2006 97-118 DOI: 10.1177/1049732305284002 in part supported by BC Cancer Agency
2007 October 1: National Breast Cancer Coalition Survey Reveals That Heightened Breast Cancer Awareness Has Insufficient Impact on Knowledge/NBCC Calls on Presidential Candidates To Develop Strategies to Address the Most Prevalent Form of Cancer in Women
http://www.natlbcc.org/bin/index.asp?strid=985&btnid=2&depid=20
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
October 2007 Press Release: Vermillion Protein Biomarkers Help Detect Early-Stage Ovarian Cancer and Predict Survival
Data Presented at European Society of Gynecological Oncology Meeting –
http://money.cnn.com/news/newsfeeds/articles/prnewswire/AQW08931102007-1.htm

genetics? patient safety? ovarian cancer survival? ethics? links & references - Survivors' Debate: The Past Decade in Ovarian Cancer 'CON' side of debate Sandi Pniauskas

"CON" side of ovarian cancer debate including all aspects of care: eg. survival, access, ethics, patient safety plus reference materials Download File sent to you by sandi pniauskas: 2011 aug 28 2007 FINAL Revised Nov 2009 SANDI PNIAUSKAS Survivors' Debate NOVI.pdf 1.4 MB Virus Checked File will be available for download for 7 days. To download the file, click on the Download button above or copy and paste this URL into your browser: https://sendnow.acrobat.com/?i=Dj1yeKchBEAqk7*sNdpnNg Note: Adobe SendNow may notify the sender when you download these files. Report Abuse
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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

by Dr. Hsien-Hsien Lei

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.