OVARIAN CANCER and US: Pniauskas

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Showing posts with label Pniauskas. Show all posts
Showing posts with label Pniauskas. Show all posts

Monday, September 12, 2011

revised blogger's commentary - ovarian cancer (patient safety, ethics, survival, genetics.....)



Blogger's Note:

check back for additional comments and add your own


In the next several days previously unpublished work regarding "Survivors' Debate: The Past Decade in Ovarian Cancer" will be posted to this blog.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.

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(unpublished) Survivors' Debate: The Past Decade in Ovarian Cancer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

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.

Signs and symptoms
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

Note: this blog and others maintain searchable databases of information for help

Wednesday, October 13, 2010

Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna re: Survivors' Debate (Ovarian Cancer) - repost



Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna

by Dr. Hsien-Hsien Lei
Posted September 28, 2007 in DNA Testing, DNA and Disease, Personalities with DNA

How times have changed. Cancer has come from being taboo to being a subject of debate. Even better, ever more cancer survivors are now leading the charge for better healthcare.
Two ovarian cancer survivors, Sandi Pniauskas and Carolyn Benivegna, have joined to hold the Survivors Debate: The Past Decade in Ovarian Research. Two events are scheduled for October 27 in Michigan and November 3 in Toronto. Details are available at the Survivors Debate blog.
Earlier this week, Sandi and Carolyn participated in an exclusive interview with me for Eye on DNA. Learn more about what it’s like to have ovarian cancer and these women’s experiences with genetic testing. Their very personal stories remind us of the realities of cancer.
~~~~~
Hsien Lei: What is it like to have ovarian cancer as opposed to other forms of cancer?
carolynCarolyn Benivegna: Naturally, some forms of cancer are worse than others in terms of prognosis. I have no doubt that ovarian cancer will eventually kill me. I’m a fighter, though, and I keep beating it back with the biggest sticks I can find. I have been doing this for over nine years, though they said I probably wouldn’t live two years at the time of my diagnosis. Having ovarian cancer causes me to be angry at “the system” sometimes because ovarian cancer does not get its fair share of research funding or educational/awareness efforts. This has improved over the past decade, but it’s got a long way to go.
sandiSandi Pniauskas: This is an interesting question and indeed one which is very difficult to explain. I believe that most cancer patients/family caregivers might feel the same way at the time of the initial cancer diagnosis, so I will try to explain. I think the word ‘Cancer’ is first heard and then secondarily the type of cancer. As we know from public opinion polls, the vast majority of people do not necessarily understand that cancer is not a singular disease, but many different types and each one has its own set of treatments, prognosis and profile. People often ask what type of cancer, but after that, due to the lack of awareness and education, the detailed information does not ’stick’. Improvements in this area are being made, but it is my opinion, that we must change tactics because what we have been doing is not working for the vast majority.
I knew what ovaries were of course, but, had no idea that there was a cancer called ovarian cancer. Ovaries are indeed what makes women – women and this seems like such a rather insignificant statement . That is until we realize that not having ovaries (due to surgical intervention) makes a huge impact on the way we see ourselves, as women, not to speak of the complications which result and in particular premenopausal women, such as myself, due to surgical intervention. Similar to other cancers, it is not a cancer that you can ’see’, but not having ovaries, again, is not only biologically complex but emotionally as well. I guess I might try to equate this with cancer of the gall bladder. Trying to put this into context, as an example, may be gall bladder cancer patients and this is said with the greatest of respect for those patients. Patients, cancer or not, can live without a gall bladder but it is not typically associated with an extreme physical or emotional dysfunction.
With ovarian cancer comes the surprise that you don’t need to visit ‘that’ particular aisle of the drug store anymore. It’s a small issue in the larger picture, but part of every woman’s life. In fact, I think it took me 6 months to realize that the trek down this pharma aisle was no longer required. It’s a fact, which still to this day, strikes me with a small amount of humour. The larger less humourous issue is the lack of the ability to have children and while a select few ovarian cancers are spared, this is not the norm.
As to the broader question of other forms of cancer, I would have to say that now, when the words of ovarian cancer are mentioned, it brings a reaction of “Oh, that’s a bad one’” but on the other hand, often times, the general public believe that you take out the ovaries and get on with your life, along with maybe a little chemo. It is a sense of dismissal that is concerning and that indeed exists within our patient populations to some degree today. This is very concerning and very unfortunate.
Hsien: Sandi, you had a significant history of cancer in your family. How did that influence your approach to finding treatment for your own cancer?
Sandi: In fact, the realization came only after the fact in our situation. So, allow me to explain because it is important and sends a key message for the benefit of others.
When I was first diagnosed, and as the eldest of 5 siblings, I said I was ‘happy’ for the ovarian cancer diagnosis. Why ‘happy’? I thought, in a very uninformed way, that this meant that through my diagnosis I was ‘it’ for the family – that I had taken the ‘cancer hit’ for the family and so the others would be spared. In fact, 6 months and 1 year later two younger sisters also had cancer diagnoses. We were all in our ’40’s and 3 cancer diagnoses in a time span of 2 years, a fact which is quite stunning.
Since this time, I have come to realize that not only are we not alone, but indeed, there are worse families with many more incidents/deaths of cancers. After the diagnosis of cancer of the 3rd sibling, it dawned on me that something was not right. I remembered my Mother talking about her Grandmother and ‘being in bed all of the time because she was sick from cancer”. I pursued obtaining the medical death certificate for my Great-Grandmother and indeed, she died of colo-rectal and endometrial (uterine) cancers. My Grandfather also died of a cancer but I was unable to locate that information.
As with other families, there was no one still alive to ask for further information and this made it more challenging, but not insurmountable. The unfortunate part of all of this, in hindsight, is that it did not have to happen but it wasn’t necessarily the fault of anyone person, just the set of circumstances and timing. Unlike our situation, however, if there is any cancer diagnosis in the family it would be important to explore the family history right at the time of the initial diagnosis rather than letting it happen, so to speak. It might have saved my younger sister from her death, not to mention the suffering.
We are part of the genetic syndrome which is called the Lynch Syndrome and sometimes it is known as the ‘family cancer’ because of the wide range of cancers experienced in these families, ovarian cancer of which is one. Since I had already had my treatments, approach to treatment is an after-the-fact question. However, I had encouraged my younger sister to maintain a heightened surveillance program as her risk factors were the most similar to mine. At the time and before her diagnosis, I did not understand the connection and the risk for other cancers.
Would a heightened awareness and surveillance program have influenced her outcome? The answer at the very least is quite possibly.

teal ribbonHsien: Carolyn, do you also have a family history of cancer? How did this knowledge affect you?
Carolyn: Yes, my maternal grandmother died of breast cancer, my maternal grandfather died of stomach cancer, and my maternal aunt died of ovarian cancer. There was also some breast cancer on my father’s side of the family (two of his sisters). That’s why I was always conscientious about breast cancer screening, never dreaming that I was a candidate for ovarian cancer (having had my ovaries removed many years before my ovca diagnosis). After I was dx. with ovca, I insisted on genetic testing and was found to be BRCA-1 positive. Since then 12 other members of my family have been tested for that specific genetic mutation, and they are ALL positive.
The knowledge of the genetic mutation affected me by moving me into action to educate my family members about the genetic predisposition to the various cancers in the BRCA-1 mutation. It has also influenced my decisions on which treatments to take.
Hsien: How did you feel before, during, and after genetic testing (prior to receiving your results)?
Carolyn: I think I was generally numb before my genetic testing. I knew I had to do it, and I did it. I had been diagnosed, had surgery, and had two of six scheduled chemo treatments when I decided on genetic testing.
When I was found to be BRCA-1 positive, I was disappointed because it meant that my children were at risk due to something I had inadvertently passed on to them. Though I know I shouldn’t feel guilty about this, I can’t help feeling responsible for passing on something to them that could cause them a lot of pain and illness sometime in the future.
I’m glad I was tested, however, because I believe that knowledge gives us the power to make enlightened decisions about our healthcare. Prior to my diagnosis, I was not knowledgeable about ovarian cancer or genetic mutations and, consequently, was diagnosed at Stage IIIC Primary Peritoneal Cancer.
Sandi: I initiated the genetic testing for both the BRCA 1/2 and the Lynch Syndrome after our diagnoses. The rationale for the BRCA testing was due to unknown cancer types in our family, as well as a female first cousin, who was diagnosed with an early-age breast cancer. At this point, for me, the question was not what, but what to do with the information.
From a strictly scientific perspective and to bring research forward, I knew that genetic testing might one day bring a resolution to many of the unanswered questions and for the benefit of our future generations. So, I tried to look at this very clinically. Because I pursued the genetic testing after completing my treatments of surgery, chemotherapy and radiation, I had the benefit of time to reflect on the emotional issues. I often times try to convey to people that if we can, and it is not always possible, we need to put that emotional aspect in ‘a little box’. This is what I was able to do and this is strictly an individual response.
Not having had children also was of benefit because there was no burden of passing along those genes, which in my own personal set of circumstances made the genetic testing a much easier decision. If I had had children, the decision would have become much more complicated.
At the initial time of pursuing the genetic testing, I didn’t believe that waiting for the test results would be an issue. Understanding that while genetic testing in Canada is covered under our universal healthcare system, the results are not received in a timely manner. The results of the BRCA testing took 4 months and the results of the Lynch Syndrome testing took approximately a year. I kept myself very busy with ovarian cancer advocacy issues and participation in our international online community which is an easy way to say, I kept myself busy. However, not long after, I told the genetic counselor that while I thought waiting for the test results was not an issue, indeed, it was.
The BRCA results were negative which I anticipated. The Lynch Syndrome testing was ‘inconclusive’ meaning they were unable to locate anyone of the known genes. It is my belief that the only truly significant result is a positive result and while this stuns many people, to me a positive result means that there is some form of certainty and as a result there is a plan of action. An inconclusive result does not answer the question. Having said this, without a conclusive result, meaning a positive result, we are still faced with the reality of the family history and are waiting for science to catch up with us.
I do have to say that I am very encourage by new and recent research findings and while this does not necessarily, depending on the genetic syndrome, at this time, translate into day-to-day care, it will. After receiving the results, I am a firm advocate for awareness both within the healthcare professional communities and patient communities for the benefit of those who might be at risk for any familial link/cancer predisposition through a known genetic syndrome. It is important also for all cancer patients to understand that there are quite a number of different syndromes, so appropriate genetic counselling is crucial.
Hsien: After receiving the results of your genetic tests, how did you feel? How did the results influence your life choices?
Sandi: At this time, there are few options available for my future life choices. Surveillance and screening are available for only 2 of the cancers for which I am at risk. Fortunately, the highest risk for me at this point is colo-rectal cancer and there is screening available through colonoscopies. For those other cancers of which I am risk, there is no screening. However, we have taken care of endometrial and ovarian cancer risks due to my onset of ovarian cancer. While I am at a lesser risk for stomach and pancreatic cancers, I am hoping that those are not the ones which I will die from. At the same time, there continues to be the risk of a late/new ovarian cancer although small. Risk is all relative and risk is only low if it is not you – that’s the mind-game in all honesty.
Hsien: What do you think will be the hottest topics of the Survivors Debate? You specifically mention genetics and access to care and communications. How do your two viewpoints differ from one another? What do you hope people will do after attending the Debate?
Carolyn: I think one of the hottest topics will be “Access to Care.” This is a big issue in the U.S. right now and is a problem here and throughout the world. Sandi and I actually agree on many subjects. For the sake of the debate, we are taking opposing viewpoints on all the issues so that we can present diametrically opposite viewpoints, as a debate should!
I (personally) hope the debate will help create an environment where survivors will be included more in the dialog and decision-making processes as they pertain to cancer. I hope the controversy spurred by the debates will accelerate forums of this nature, resulting in increased research, treatment, and communication that includes survivors as the very core.
Sandi: One of the most important features of the Survivors’ Debate programs is that it allows, without bias or judgment, a public forum for people to express themselves through dialogue and indeed challenge the issues of what is not working. We know what is working, but we need to address what is not – publicly.
Personally, I am tired of doing the same-old, same-old. What always worries me is that many patients feel that by speaking up and out that this will impact their care. We must and need to change this sense of, in some cases a lack of entitlement, and it take a great deal of morale fortitude to do so. We encourage healthcare providers to attend en masse and also speak openly about their own issues. We want you to sit side by side with your patients – the human compassion and understanding which we will all take away with us will be the greatest and most successful and lasting result. It is also hoped that with public debate we can apply pressure for change. I have the belief and know that we can, but the question is will we?
There is a lot of anger amongst all of us, most of which is related to system failures. Today, we still have not been able to address the issues of the Patients voices in any effective way. Patients for the most part have the highest regard for their professional caregivers and want to have these dialogues. Fear of the unknown holds us back but it is decidedly less of a fear than the cancer itself, in my view. At the moment, other people are speaking for cancer patients and their families and we are at the point where the information is not being translated effectively.
The dichotomies in the medical literature attest to this where patients/family caregivers and medical staff do not have the same opinions on what is important. In fact, many healthcare professionals’ stories also note these issues. This is not so much of a criticism but a recognition of where we need to go. It is my profound expectation and hope that through these public forums we can bridge this gap. The debate forums allow us to take that much needed step forward, translating patients intellect and sense of responsibility and bring with it a public voice as opposed to a non-cancer voices in healthcare decision-making. If we do not do this, changes will occur which will not be effective in any meaningful way to those for whom we serve – the patients. This in fact, will be the change and from my perspective of mutual benefit to all.
On a personal level, I have lost not only family but most of the friends whom I first came into contact with when newly diagnosed. I simply cannot accept the degree of suffering which I experience each day, through others, without at least trying to take yes, a controversial but important step forward. These forums are not without controversy but we must put aside the issues which consistently get in the way of moving forward. I cannot think of a better or more humane way in which to do so.
Carolyn and I agree, as Carolyn mentions, on most issues. Most importantly ovarian cancer is a global issue and while some of the access to care are points of technical issues, the reality is that ovarian cancer to Carolyn and ovarian cancer to me, are the same. We both think this is extremely exciting that today patients are or can be the experts in their own cancers. If by chance, our information is lacking, then we want to know and we cannot underestimate how we truly believe this. An oncologist once told me that a little information is a dangerous thing. After initially being significantly annoyed, I decided he/she was right. These are our efforts to profile and dialogue what is not understood about the ‘average’ cancer patient but more important what is important. The learning curve has been steep, but it can be done.
The Debates are the mechanism to do so.
Thank you so much for allowing us to present our views, concerns and hopes for the future.
~~~~~
Bravo, Carolyn and Sandi! Thank you for sharing your stories and thoughts with us. There are many cancer survivors who will undoubtedly be inspired by your proactive determination.

Saturday, July 31, 2010

Press Release: Canada's Leading Ovarian Cancer "Patient" Advocate Speaks at Sask Conference






 

OCATS

Ovarian Cancer Awareness & Treatment in Saskatchewan
A SUPPORT & ACTION GROUP FOR ANYONE AFFECTED BY GYNECOLOGIC CANCERS

M E D I A   R E L E A S E


CANADA’S LEADING OVARIAN CANCER “PATIENT” ADVOCATE SPEAKS AT SASK CONFERENCE

For Immediate Release
REGINA, July 26, 2010  - Conference Co-Chairs Scott Livingstone, CEO Sask Cancer Agency and Darlene Gray, President, OCATS, in partnership with CNT Management Group, invite survivors, support people and the medical community to the first ever Gynecologic Cancer Conference, Strategies for Survival on September 24, 2010 at the Regina Inn.  Early Bird registration fees available until the end of July for this important event featuring some of the province’s most knowledgeable specialists in female reproductive cancers.  Experts will address clinical study trials for new drug therapies, managing cancer recurrence, the emotional aspects of cancer diagnoses, identifying families with hereditary risks, alternative and complimentary therapies available and the roles of our nurses, general practitioners, and pharmacists in cancer care delivery.

A conference highlight will be a presentation by Canada’s leading ovarian cancer “patient” advocate, Sandi Pniauskas.  Other experts presenting at the conference include the following.

Dr. Christopher Giede, Gynecologic Oncologist at the Royal University Hospital, Saskatoon and the team leader of Saskatchewan gynecologic oncology team of female reproductive cancer specialists.
Dr. Muhammad Salim, Medical Oncologist at the Allan Blair Cancer Centre, Regina and the specialist of all our Clinical Study Trials. 
Dr. Vicki Holmes, Medical Director of the Women’s Mid-Life Health Centre in Saskatoon. Dr. Holmes developed the concept of this centre and is the resident physician at the centre.
Rosalee Longmoore, RN, a Registered Nurse for 34 years with a wide range of experience on all Saskatchewan medical nursing issues.
Andrew Gilbertson, Pharmacist and owner of Hill Avenue Drugs, Regina, Regina’s first and currently only pharmacy that specializes in compounding custom prescription medications.
Dr. Heather Fox, Naturopath, a health specialist with over 30 years experienced and a registered doctor of Natural Medicine through the Examining Board of Natural Medicine Practitioners, Canada.
Monica Milas, Personal Growth and Healing Services Counsellor and Therapist.
Wendy Stoeber, Genetic Counsellor at the Division of Medical Genetics, Royal University Hospital, Saskatoon.
And a member of the Gynecologic Oncology Program Working Group, Scott Livingstone, the new CEO of the Sask Cancer Agency, will speak about Saskatchewan’s new Gynecologic Oncology Program.

The conference will include an exhibit hall marketplace and be followed by the OCATS Annual Benefit Gala and Silent Auction featuring Jack Semple and presentation of the OCATS 2010 Catleya Award of Collaboration & Vision.  Conference on-line registration at  http://guest.cvent.com/EVENTS/Info/Summary.aspx?e=ce9c4a0f-157e-4a42-ab49-0f19dae902e3. A group guestroom rate is available at the Regina Inn by asking for the OCATS event.  Discounted conference fees available for OCATS members and all students.  For more information please contact Darlene at 306-775-1848 or CNT Management Group Claire BĂ©langer-Parker [claire.belanger-parker@cntgrp.ca].

For more info contact Darlene Gray at OCATS at 306-775-1848, cell 529-3199 or darlenegray@sasktel.netdarlenegray@sasktel.net
# # #

Thursday, June 24, 2010

authors: Carolyn Benivegna*, Tracy Gorden*...(*with us in spirit) "Giving VOICE to Ovarian Cancer Survivors" (previously unpublished)





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. 
 
Giving VOICE to ovarian cancer survivors
Survivors debate the issues

Authors:  Carolyn Benivegna*, Tracy Gorden*,  Sandi Pniauskas 
(*with us in spirit)

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.

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.

Signs and symptoms
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 (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. 

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