Sandi's notes and background on this article:
A few years ago, I was asked to write a paper on ovarian cancer specific to the Survivors' Debate. Carolyn and Tracy were enlisted to co-author the article - a team approach for those who know best. This was the final version which went unpublished.
It went unpublished mainly because editorial requests virtually 'sanitized' the article to the point where our message became close to irrelevant. At that point, I declined our involvement.
On behalf of my - our friends, Carolyn and Tracy, and with the beneficial advances brought on through social media, here is the final and unedited version.
A few years ago, I was asked to write a paper on ovarian cancer specific to the Survivors' Debate. Carolyn and Tracy were enlisted to co-author the article - a team approach for those who know best. This was the final version which went unpublished.
It went unpublished mainly because editorial requests virtually 'sanitized' the article to the point where our message became close to irrelevant. At that point, I declined our involvement.
On behalf of my - our friends, Carolyn and Tracy, and with the beneficial advances brought on through social media, here is the final and unedited version.
Giving VOICE to ovarian cancer survivors
Survivors debate
the issues
Authors:
Carolyn Benivegna*, Tracy Gorden*, Sandi Pniauskas
(*with us in spirit)
(*with us in spirit)
During her research for a presentation
concerning cancer patients’ voices in healthcare, Sandi Pniauskas
While it would be imprudent to take this
singular and remarkable quote as the “rule du jour,” this philosophy, and
others similar to it, are prevalent in both private perception and in published
literature on cancer survival.
We can be thankful for more enlightened
views, such as this example from the Journal of Health and Social Policy
that, instead, celebrates the voices and contributions of (non-medical) health
educators and activists:
The activists'
efforts wrested control of “authoritative knowledge” that had once
been the sole domain
of the “experts” with advanced medical training. They used
this knowledge to
empower “average” people with medical information…to
promote self help and
engage in civil disobedience, which led to changes in
healthcare delivery (2006;21(3):55-69).
As ovarian cancer survivors
we have learned much over the years.
Average, everyday citizens are taking active roles in their treatments
and educating themselves about this deadly disease. Yet in our view, and through the course of
shedding light on this disease and the experiences of those living with it, it
has become obvious that there is no such thing as an “average” survivor.
Ovarian cancer is not
a new disease; in fact, it has been traced back as far as Egyptian times. Advancements in research, education,
awareness and access to care have gained some momentum, but they have also hit
many roadblocks. As ovarian cancer
survivors with international grassroots connections
to, and support from, other survivors we
regularly discuss where this disease has been, and where it is going. We now feel it is time to move these
behind-the-scenes discussions to open forums.
By being informed and proactive
women with ovarian cancer, we have recognized the value and importance of
conducting our own critical analysis. Most
importantly, we have learned to shift the focus onto the human elements and
burdens of suffering that we experience each day in our communities.
Creating
a public forum for ovarian cancer survivors
As those living with this disease, we dream
of what the future holds in terms of early detection, education, research,
treatment and a cure. This dream has evolved in the form of organizing two
ovarian cancer conferences for October 2007 -- one to be held in Novi, Michigan
(US) and another in Toronto, Ontario (Canada) -- both entitled, “Survivors’ Debate: The Past Decade
in Ovarian Cancer.”
These public meetings are the result of a
collaborative effort by proactive and knowledgeable ovarian cancer survivors
with supporting oncology nurses. They will take place with the understanding
that they will be fully inclusive – everyone is welcome -- but that the focus
will remain on the experiences, needs and concerns of cancer patients and
survivors, their families and friends.
The conferences will take place in two
locations in two countries because our issues are the same: access to care,
awareness, early detection, survival rates and genetics. The directive and
focus of both conferences is to offer a place to exchange ideas honestly and
openly without judgment or bias.
Patients need an environment where they
feel encouraged to discuss the many difficulties they face. Sometimes it is very difficult to find that space
-- a place without fear of retribution, criticism or dismissive attitudes. Patient-to-patient
discussion and counseling offers this environment. It allows for in-depth
dialogue on a variety of topics that detail what strategies work for survivors
and their families and what is not effective. Healthcare settings just do not
currently lend themselves to foster the dialogue that is needed for survivors
that this new forum provides.
However, the conferences will also focus on
creating a public force to expedite change, which can only start with
communication. Born from need – an arena
for discussion for ovarian cancer survivors by survivors -- the “Survivors’
Debate” has taken form.
But while the conferences are about patients
speaking for themselves they are not speaking by themselves. With this
new forum for dialogue, debate and discussion, we can highlight the detailed
knowledge and expertise of our international ovarian cancer community with
almost a decade of experience behind us, and explain why, as a community, we
work. But we will also be able to explore the variety of reasons why what is
needed by survivors and their friends and families is not currently being translated
into caregiving.
Our ovarian cancer survivor connections and
bonds have formed through the years by enduring extreme challenges and personal
losses. The only bias we have as survivors is the bias to endure and to survive
to the best of our abilities, not only as individuals but, importantly, as a
community. To be very blunt, previously this has included much silent
suffering.
It is long past due that we take our real
issues into a public forum and encourage everyone to participate. We plan to
make some long overdue noise at these debates about ovarian cancer, and we
envision that these two scheduled events are only the beginning of a completely
new trend in ovarian cancer activism.
For more information on the Survivors’ Debate: The Past Decade in Ovarian Cancer,
visit: http://ovariancancerdebate.blogspot.com
Side-bar:
Ovarian
cancer
Ovarian cancer is a serious and under-recognized threat to women's
health which kills more women than all of the gynaecologic cancers
combined. The lifetime risk of contracting
ovarian cancer is one in seventy. Ovarian cancer is very treatable when caught early, but the
vast majority of cases are not diagnosed until too late, which means that while
it is not as common as some other cancers, it remains a woman’s cancer with a
poor survival rate.
Unfortunately, an early detection test still remains elusive and
contrary to public perception, the PAP test is not a screening test for ovarian
cancer. Efforts to diagnose ovarian cancer is through a combination of: tumor
marker test (called the CA125), a bimanual pelvic/rectal exam and transvaginal
ultrasound. Actual confirmation of the diagnosis of ovarian cancer is confirmed
with surgery and pathology reports (eg. Laboratory tests on tissues specimens).
When ovarian cancer is caught before it has spread beyond the ovaries 80-90% of
women will survive five years. When diagnosed after the disease has spread, the
chance of five-year survival drops to approximately 20-30% or less.
Symptoms of ovarian cancer are nonspecific
and mimic those of many other more common conditions. However, as a result of the original work in
1999 of Cindy Melancon
, RN Dr Barbara Goff
A consensus expert panel convened earlier
this year concluded that the following four symptoms are much more likely to
occur in women with ovarian cancer than women in the general population:
* Bloating;
* Pelvic or abdominal pain;
* Difficulty eating or feeling full quickly;
* Urinary symptoms (urgency or frequency).
Several other symptoms have been commonly
reported by women with ovarian cancer, as well; these symptoms include fatigue,
indigestion, back pain, pain with intercourse, constipation and menstrual
irregularities. A woman should consult with
a health care professional if any of these symptoms persist or feel abnormal.
What you can do
* Understand your family history (e.g., ovarian, breast, colorectal
cancer,endometrial cancers);
*
Educate yourself and understand ovarian cancer as it relates to your
specific diagnosis;
*
Communicate your concerns with your healthcare professional;
*
Recognize and support other ovarian cancer women/families in your
community;
*
Join an online support or face-to-face support group;
*
Join a cancer organization or a program in your community and/or
hospital.
Ovarian cancer
is not a silent disease – speak up and speak out
Have a look:
ACOR – Ovarian Cancer Mailing List
(ASSOCIATION OF CANCER ONLINE RESOURCES
NCI (NATIONAL CANCER INSTITUTE - U.S.
MEDLINE PLUS
CLINICAL TRIALS DATABASE
