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Sunday, August 28, 2011
genetics? patient safety? ovarian cancer survival? ethics? links & references - Survivors' Debate: The Past Decade in Ovarian Cancer 'CON' side of debate Sandi Pniauskas
conference - Survivors' Debate: The Past Decade in Ovarian Cancer - Carolyn Benivegna (1948 - (Sept) 2008) "PRO" presentation
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Friday, August 26, 2011
Carolyn Benivegna - Ovarian Cancer Survivors' Debate award winner
 |
| Annamarie & Carolyn (Survivors' Debate award winner) |
 |
| 1948-2008 |
Thursday, August 25, 2011
Wednesday, August 24, 2011
Exclusive Interview: Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna by Dr. Hsien-Hsien Lei (repost)
Eye on DNA | How will it change your life?
Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna
by Dr. Hsien-Hsien Lei
2 countries (Detroit/Toronto) same agenda/format - Survivors' Debate: The Past Decade in Ovarian Cancer
Survivors’
Debate: The Past Decade in Ovarian Cancer
AGENDA
10:00 am - 12:30 pm
(unpublished) Survivors' Debate: The Past Decade in Ovarian Cancer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original (unsanitized/unpublished version)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
Monday, August 22, 2011
PLoS Medicine: Being the Ghost in the Machine: A Medical Ghostwriter's Personal View
"Introduction
Ethical concerns about medical ghostwriting have been directed primarily at “guest” authors and the pharmaceutical companies that pay them. One voice that is largely missing is that of the ghostwriters themselves who, after all, create the documents that are in the ethical and legal crosshairs. Without them, one could argue, there can be no fraud, because it is they who create the fraudulent product.For almost 11 years, I worked as a medical writer, creating a variety of pieces including the occasional ghostwritten article. For the most part, I never saw the finished paper, nor did I care to. This article describes what I did, why I did it, why I stopped doing it, and what I think might be done about the problem of fraud in authorship......"cont'd
full free access: PLoS Medicine: How Industry Uses the ICMJE Guidelines to Manipulate Authorship—And How They Should Be Revised
"The ICMJE guidelines will always be a work in progress, but the adjustments proposed here have the potential to end the self-concealment and authorial misrepresentations that mar industry's contributions to the literature. Furthermore, they have the potential to help industry achieve the enhanced respect its beneficial contributions to medicine deserve. Industry publications will always have a commercial valence alongside their scientific and medical content: this should henceforth be truthfully displayed, and no longer downplayed or concealed."
free full access: Variants of Uncertain Significance in Breast Cancer–Related Genes: Real-World Implications for a Clinical Conundrum. Part One: Clinical Genetics Recommendations
Variants of Uncertain Significance in Breast Cancer–Related Genes: Real-World Implications for a Clinical Conundrum. Part One: Clinical Genetics Recommendations
Article Outline
- Positive BRCA1 or BRCA2
- Negative BRCA1 and BRCA2
- Variant of Uncertain Clinical Significance
- Case No. 1: BRCA1 VUS
- Case No. 2: BRCA2 VUS
- Case No. 3: BRCA2 VUS Favoring Polymorphism
- Clinical Discussion Points (Cases No. 2 and 3)
- Clinical Geneticists' Opinions
- Cancer Geneticists' Opinions
- Clinical Geneticists' Opinions
- Discussion
- References
- Copyright
Pilot Program to Personalize Care & Improve Quality of Life for Women With Recurrent Ovarian Cancer - Full Text View - ClinicalTrials.gov (CAM)
This study is currently recruiting participants.
Verified on August 2011
First Received on August 16, 2011. Last Updated on August 17, 2011
Purpose
The purpose of this study is to find out if complementary and alternative medicines (CAM) should be included with traditional therapy for women with recurrent ovarian cancer. Some of the alternative medicines include non-traditional drug and herbal therapies along with dietary and nutritional strategies. Only a few of these alternative medicines have been tested with women with ovarian cancer.
abstract : The effect of sleep disturbance on quality of life in women with ovarian cancer
"PSQI was not correlated with age, time since diagnosis, number of previous chemotherapy regimens. PSQI score did not differ by current disease or chemotherapy status."
abstract: Therapy-related myeloid leukemia after treatment for epithelial ovarian carcinoma: An epidemiological analysis
abstract: Lymphadenectomy in ovarian cancer: standard of care or unne... : Current Opinion in Oncology
Abstract
Purpose of review: The clinical significance of lymphadenectomy in ovarian cancer is controversial. In early ovarian cancer (EOC), it is the extent of the procedure that is the main focus of debate. In advanced disease [advanced ovarian cancer (AOC)], the issue is whether or not lymphadenectomy independently impacts survival. This review summarizes the current standard of care as it relates to the role of lymphadenectomy in ovarian cancer.
Recent findings: Lymphadenectomy in EOC is a diagnostic procedure in as much as it is an integral and mandatory part of a complete surgical staging. The required extent of the procedure, however, remains uncertain. It has been suggested that at least 10 nodes from different, predefined retroperitoneal sites should be the minimum number removed. Lymphadenectomy in AOC is of potential therapeutic value. The only published randomized clinical trial (RCT) showed no overall survival benefit after radical/systematic lymphadenectomy, although there was an impact on 6-month disease-free survival. Conversely, retrospective studies, a meta-analysis and a re-analysis of three RCTs in AOC do suggest an overall survival benefit for radical/systematic lymphadenectomy.
Summary: This review concludes with the recommendation that lymphadenectomy in EOC is a mandatory part of surgical staging and that a minimum of 10 nodes should be harvested from different retroperitoneal sites. In AOC, lymphadenectomy can be considered when intraperitoneal cytoreduction has been complete or when there are bulky nodes.
abstract: Olaparib in patients with recurrent high-grade serous or poorly differentiated ovarian carcinoma or triple-negative breast cancer: a phase 2, multicentre, open-label, non-randomised study : The Lancet Oncology (with/without brca mutation/s)
The Lancet Oncology, Early Online Publication, 22 August 2011
doi:10.1016/S1470-2045(11)70214-5
Cite or Link Using DOI
Cite or Link Using DOIOlaparib in patients with recurrent high-grade serous or poorly differentiated ovarian carcinoma or triple-negative breast cancer: a phase 2, multicentre, open-label, non-randomised study
"...
Findings
91
patients were enrolled (65 with ovarian cancer and 26 breast cancer)
and 90 were treated between July 8, 2008, and Sept 24, 2009. In the
ovarian cancer cohorts, 64 patients received treatment. 63 patients had
target lesions and therefore were evaluable for objective response as
per RECIST. In these patients, confirmed objective responses were seen
in seven (41%; 95% CI 22—64) of 17 patients with BRCA1 or BRCA2
mutations and 11 (24%; 14—38) of 46 without mutations. No confirmed
objective responses were reported in patients with breast cancer. The
most common adverse events were fatigue (45 [70%] of patients with
ovarian cancer, 13 [50%] of patients with breast cancer), nausea (42
[66%] and 16 [62%]), vomiting (25 [39%] and nine [35%]), and decreased
appetite (23 [36%] and seven [27%])...."
CytRx President and CEO Steven Kriegsman and CMO Dr. Daniel Levitt Discuss Company Advantages and Oncology Clinical Pipeline Attributes in OncLive Interview - MarketWatch (INNO-206)
Note: in research
"Previous studies have shown INNO-206 efficacy in tumor models of breast, ovarian, small cell lung cancer, renal cell cancer and pancreatic cancers. Additionally, a recently announced study showed that low doses of INNO-206 and doxorubicin combined achieved complete remission in aggressively growing in vivo ovarian cancer tumors. Several other chemotherapy agents have been attached to the linker used for INNO-206, including paclitaxel, camptothecin, cisplatin and methotrexate, and may be incorporated into future clinical development by the Company."
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