Showing posts with label debate. Show all posts
Showing posts with label debate. Show all posts
Sunday, January 29, 2012
Monday, September 12, 2011
revised blogger's commentary - ovarian cancer (patient safety, ethics, survival, genetics.....)
Blogger's Note:
In the next several days previously unpublished work regarding "Survivors' Debate: The Past Decade in Ovarian Cancer" will be posted to this blog. Included will be the actual presentations (unedited except for selected graphics/formatting) which were presented at the 2 debates - Detroit and Toronto.
As time permits, duplicates will also be published to the sister blog. These postings represent a long held promise, albeit late including a different media source (social media) from the original intent.
Many of these papers/articles had been rejected in the past by main stream publishers.
Monday, August 29, 2011
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Selected References 'CON' Presentation: Sandi Pniauskas - Ovarian Cancer Survivors' Debate (previously unpublished)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
Sunday, August 28, 2011
selected photos (ovarian cancer survivor participants)
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| Dr Yi Pan |
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| UK artists Clare and Denise |
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| Participant displays event poster |
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| young participants |
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| Participants |
genetics? patient safety? ovarian cancer survival? ethics? links & references - Survivors' Debate: The Past Decade in Ovarian Cancer 'CON' side of debate Sandi Pniauskas
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Friday, August 26, 2011
Carolyn Benivegna - Ovarian Cancer Survivors' Debate award winner
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| Annamarie & Carolyn (Survivors' Debate award winner) |
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| 1948-2008 |
Thursday, August 25, 2011
Wednesday, August 24, 2011
(unpublished) Survivors' Debate: The Past Decade in Ovarian Cancer
Note: apologies for selected formatting errors
February 5th, 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
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.
Tuesday, August 23, 2011
Giving VOICE to ovarian cancer survivors - authors: Carolyn Benivegna, Tracy Gorden, Sandi Pniauskas
Giving VOICE to ovarian cancer survivors ©
Survivors debate
the issues
Authors:
Carolyn Benivegna*, Tracy Gorden*, Sandi Pniauskas
*In Memorandum
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/survivorship.
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 gynecologic 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 tissue/s specimen).
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.
Symptoms of ovarian cancer are nonspecific
and mimic those of many other more common conditions, including other cancers. 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. This debate continues -semantics.
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 (organs/cancers of the gastrointestinal tract),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;
* learn and appreciate the lived experience of your fellow survivors;
*
Join a social networking support group and/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 - it is only a silent disease when 'we' are not listening
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