Ovarian Cancer at Johns Hopkins What's New? Resources Ovarian Cancer Community Coping with Ovarian Cancer Clinical Trials

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Abbreviations & Acronyms
dx diagnose, diagnosis
FSH follicle-stimulating hormone
IBS irritable bowel syndrome
IVP intravenous pyelogram — study to look at the kidneys and ureters
NED no evidence of disease
s/s signs & symptoms
SLS second-look surgery
TAH / BSO total abdominal hysterectomy / bilateral salpingectomy and oophorectomy — removal of, respectively: uterus, fallopian tubes and ovaries
tx treat, treatment
US ultrasound
WAR whole abdominal radiation
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Sandi Pniauskas

Submitted on 08/28/2003
Photo of Sandi Pniauskas Whitby Woman Joins International Medical Review Group
Mar 14, 2003

WHITBY - One of the most respected medical review organizations in the world, the Cochrane Collaboration, has invited and accepted local ovarian cancer activist Sandi Pniauskas to be one of its reviewers.

Specifically, Mrs. Pniauskas will become part of the Cochrane Collaboration's Gynecologic Cancer Collaboration Review Group. The United Kingdom-based Cochrane organization reviews all presentations on a variety of diseases from scientists and physicians around the world. As an ovarian cancer survivor, Mrs. Pniauskas can't wait to share what she's learned since being diagnosed with the disease three-and-a-half years ago.

"No other ovarian cancer survivor is a member of Cochrane," she says, still a bit surprised at the honour. "Someone I knew who was already involved with the organization was aware they were looking for consumer reviews and asked me if I would consider participating."

The Cochrane Collaboration is an international, non-profit organization intended to help people make informed decisions about health care by reviewing and promoting available evidence on the effects of interventions and treatments. It is a charity registered in the United Kingdom.

A parallel goal of the collaboration is to affect future research in health by identifying where research has been done, and where more is needed. According to the organization's Web site, consumer feedback is a key strategy in making Cochrane reviews more relevant, accessible, and able to improve health care for the people who need it.

"I'm excited about it because it involves the consumer, the lay person," says Mrs. Pniauskas. "Being asked for input in the process is extraordinary for the ovarian cancer population because we're finally on the road to including patients and their health care. It's a process of inclusion."

In the meantime, the busy advocate will teach classes about ovarian cancer at Durham College March 29 and May 3. She runs a peer support group for area women with gynecological cancers, while lending her considerable talents to the gynecologic cancer program at Princess Margaret Hospital.

Her studies about ovarian cancer have brought her to the conclusion that there is a link between ovarian, breast and colon cancers. "Awareness is all we have right now. Research is desperately needed to change this."

Visit www.cochrane.org for more information.



Submission to the Health Care Commission of Canada

Sandi Pniauskas* Pamela J. West Ovarian Cancer RN, M.Sc., CON(C) Patient and Advocate Acute Care Nurse Practitioner Oncology May 30, 2002

Introduction. Thank you for allowing me this opportunity to present my views regarding the ongoing debates concerning our Health Care system in Canada. The issues are overwhelming. There are many needs and enormous disparities. I will tell you that I have reviewed all the Submissions on your website that directly and indirectly affect Ovarian Cancer women. I have also communicated with Ovarian Cancer women across the Nation - from coast to coast. I consider it a privilege and an honour to be the voice of many of these women and to be able to express their views. I will tell you about dignity and care and respect and the human side of this woman's cancer. But, I also want to highlight about other realities as well. This is not for the faint of heart. I need to preface my remarks by saying that Ovarian Cancer women in this province, and in this country, value and appreciate the dedication and commitment of medical professionals who go above and beyond their duties in practicing quality patient care: not only quality care, but outstanding support of ovarian cancer women and their families as they face and endure daily obstacles. I witnessed this only this past Tuesday when visiting the Kingston Cancer Centre. Pam West, who is with me here today, exemplifies a real life example of true progression between patient and nursing. The support which Pam has provided to me and in turn our Ovarian Cancer community is not to be found elsewhere in the whole of this country. She recognized the need to educate and communicate. She allowed me the opportunity to teach nurses about ovarian cancer. We just decided - okay - let's do it and we did and we continue to do so. It has progressed from there. It does not have to be complicated. No budget, no meetings, no bureaucracy Please keep this in mind as you hear what I am about to say, as I do have some criticisms. Let me present a patient's perspective on what is not working and propose some solutions that can be put in place today, without draining our existing limited resources.

Background. In order to understand what I am about to discuss, it is important that you appreciate the significance of a cancer women fear the most - Ovarian Cancer. Being diagnosed with ovarian cancer gives the connotation that this is a disease which comes with an automatic death sentence. This misconception permeates the minds of both only the public and health professionals. It does not have to be that way. In Canada in 2002, ovarian cancer has the highest mortality rate of all gynecologic cancers with an estimated annual mortality rate of 62% of all diagnosed cases. (1) To contrast this and to use the same criteria, the annual mortality rate of women's breast cancer is 26%. Colorectal cancer (a disease of both men and women) has a 37% annual death rate among its diagnosed. There are no screening tests, such as a PSA test in prostate cancer, colonoscopy in colorectal cancer or mammography in breast cancer. Seventy-five per cent of ovarian cancers are diagnosed in advanced stages resulting in a 5-year survival rate of approximately 25%. Approximately 78% of ovarian cancer women live at least one (1) year post diagnosis and the majority will die within two and a half (2½) years.(3) There have been no significant improved survival rates in years and decades.(14) The fact remains that ovarian cancer has a high rate of recurrence after surgery and other treatment modalities. There is no known cause of 90% of ovarian cancers. Five to ten per cent of women are pre-disposed due to genetic/familial links between ovarian/breast and ovarian/colorectal cancers. Ovarian cancer does not necessarily exist in isolation.

As an example, if a woman is predisposed by carrying the HNPCC gene, her lifetime risk of colorectal cancer is 80%. A secondary cancer is also of grave concern in that it relates to the treatment of a first cancer (ie: leukemia as a direct result of chemotherapy and/or radiation therapy). There is also no established relationship between diet and smoking and ovarian cancers.(2) Often considered an "older" woman's disease, sadly (and fortunately uncommon), this disease may strike your young daughters. We, ovarian cancer patients, do not fit the mold of today's mantra of Healthy Lifestyle and Prevention. Sadly, these lifestyle and health issues have no relationship with Ovarian Cancer issues. In Canada, there is simply not enough attention paid to Ovarian Cancer. Barriers 1) Access to Specialized Care Ovarian Cancer women in this country deserve equal and fair access to services. Many women across this country use the term "luck" when speaking about their care. This "luck" refers to waiting times for surgery, waiting times in emergency care, waiting times for treatments and waiting times for doctors' appointments. All Canadian women must have access to gynecologic oncologists.

International clinical evidence supports specialist care right from the onset of a suspicion of ovarian cancer. (4,5,6) Specific guidelines regarding the proper surgical procedures exist and need to be followed. In this country these guidelines are not being met (7,8,9) Surgery is one of the most important keys to ovarian cancer survival. In Canada, we are ignoring this evidenced-based research. The practical implementation is not happening. In fact, gynecologist/obstetricians still practice ovarian cancer surgery, when it should be left to gynecologic oncologists only. In doing this, I am reminded of the medical profession's code of ethics of "Do the least harm". Inadequate resources(10), including human resources, outdated diagnostic equipment, lack of knowledge and education: these key issues have been ignored. Allow me to share several experiences of ovarian cancer women, told to me over the past week. One woman stated that it would always be a thought in her mind that if she had proper surgical staging, maybe her tumour would not have ruptured. In another incident, a gynecologist's secretary told a woman that a specific doctor would "take very good care of her," meaning she did not need to see a gynecologic oncologist. It seemed like they were "selling/advertising" their services, which is impossible to understand. In addition, in both of these cases, gynecologic oncologists were available nearby, and waiting times were not an issue. In a third case, a woman recently went out of the country for a second opinion because in her province, there is no one to provide a second opinion.

So, here we stand. Ignorance of the disease and ignorance of adequate health care interventions.

Treatment. Ovarian Cancer does not care where you live, and yet, from province to province there are gross disparities in the delivery of care and in the availability of chemotherapy drugs. Drug formularies or drug coverage (or lack of) prescription medication varies from province to province. A case in point relates to Gleevec™ (STI 571). While Gleevec™ clinical trials are accruing patients in Ontario, British Columbia has lifted Gleevec™ (STI 571) from it drug formulary.

Another example would be Taxol in the recent past. Should patients diagnosed with ovarian cancer move to a province that will care for them in the fairest way? Community-based cancer centres are popping up all over Ontario without the foresight and/or ability to include/hire the appropriate staffing.

Canadians have expressed their desire to receive access to care closer to home but at what expense? If the ovarian cancer patient fully understood that traveling to see a specialist could impact on her survival, there would be no decision. This should be obvious from recent examples of patients willing to travel outside of the country for treatment. In remote communities, this may be understandable. However, are we at the point in our Health Care system where any care is deemed better than no care? Women are sent home from hospital to die without the proper support mechanisms. Ovarian cancer women suffer excruciating pain because health care workers are not available. Women experience nausea because they have no private health care plan and cannot afford the costly anti-nausea medications. There is financial distress but families are too proud to talk about it; preferring to suffer in silence. I could tell you of a 'middle-class' family who could not afford the bus fare to send their children to the hospital to visit their dying Mom. Have we considered single Moms and elderly women who live on their own? Cancer pain at the close of life should not be a medical issue in 2002, but it exists because of an ineffective system that does not recognize the wider problem. We have choices and we need to make them right. 3) Quality of Care Quality of care not only surrounds the previously alluded to 'specialist' care but also includes diagnosis, treatment, counseling and follow-up care for a cancer which never goes away. Palliative care is a reality in ovarian cancer. We have leapt into a home care system with little resources and poor planning. We need to pay more attention to these realities. 4) Respect of Patient - Education - Awareness - Patients' Bill of Rights/Dispute Mechanism It is time for a new patient bill of rights, but not in the prevailing or traditional manner. I have had personal experience with a "Patient Advocate" and realized later that in fact this 'Patient Advocate' was more of a Hospital or Doctor Advocate. A Patients' Bill of Rights means one thing to an institution but something entirely different to a patient. There needs to be a forum or individual ombudsman for support when things go wrong and a protective mechanism in place without having to revert to legal counsel. Communication is key and, in fact, solves most issues. Who speaks for the patient? Patients are afraid to contact doctors because of physicians' time limitations and a fear that this may jeopardize future care. Sometimes, this is too late. It is incumbent upon Canadians, as a compassionate Nation, to stand by those who are in need and who are unable to advocate for themselves. Although this may represent a minority of cases, one case is one too many. Specifically ovarian cancer patients need education and resources from diagnosis to death, including not only the physical but the emotional support. Today when patients are diagnosed with ovarian cancer, many leave their doctor's office without any resources. They go home stunned, shocked and in fact totally emotionally isolated. We need to provide both the public and medical personnel with accurate information about ovarian cancer. Awareness will achieve many things. Most importantly, it will result in the detection of ovarian cancer in earlier stages when survival is much improved and women can return to their place in society as healthy and fully contributing members. No one wants this more than the patient herself. Ovarian Cancer patients are not abusers of our health care system: they just want their fair share of resources and supports. Overall, I am advocating that: 1) All women suspected of ovarian cancer will be referred to a gynecologic oncologist at onset of a suspicion of malignancy (exception noted - see #4) 2) All women will have initial surgery performed by a gynecologic oncologist (exception noted - see #4) 3) All women will be educated in an unbiased manner as to the survival advantages of specialized care; 4) In remote communities where a gynecologic oncologist is not available (and the patient does not wish to commute outside her community), a consultation between all affected parties will take place 5) All women at the time of initial will be given appropriate and timely educational material covering the basic facts of ovarian cancer; 6) A nationwide Ovarian Cancer education programme will be established in all communities - for both the public and health care professionals 7) A nationwide Ovarian Cancer Survivor panel will be established to ensure that a patient's opinion/participation is sought in any discussion or proposal (research or community/hospital based program).(12)

Implementation. We acknowledge with evidenced-based medicine that ovarian cancer surgery and specialized care is required. The allocation of resources stretches far beyond me. However, if you educate family doctors regarding ovarian cancer then the mechanism for direct referral is already in place. You can circumvent the "middle man" in this case, gynecologic obstetricians, thereby relieving their workload. Time is money. Time is savings.

There need not be more studies. There needs to be action. Education can start today. It can be done across this country with little cost. Seminars, community activities, communication through nursing associations and designated awareness campaigns: all are easy ways to share the message.

Conclusions. Our universal health care philosophy is sound but needs to be updated to reflect the diversity of current needs and today's environment. We have to stop thinking about why things can't be done but rather what can be done. We need to honour the intellectual capabilities of patients and we need to operate in a manner of mutual respect and in a time frame conducive to doing so. We have internationally recognized researchers whose talents are wasted.(11,13) We need to find solutions to ovarian cancer mortality rates and we have people with a great desire and ability to do so. We need to scrap the politics because this truly is THE very one thing that stands in the way of progress. Lastly, we need to put a human face to our health care system.

We need to find the will to do this. I truly believe the will exists on an individual basis but, collectively, we are in a mess. Communication + Will = Success + Benefits

Thank you on behalf of Ovarian Cancer women in Canada

Sandi Pniauskas
117 Glen Hill Drive
Whitby, Ontario, Canada L1N 6Z8

(1) NCI Canadian Cancer Statistics 2002 Current Incidence and Mortality Estimated New Cases and Deaths for Cancer Sites by Gender, Canada, 2002

(2) American Cancer Society 2001 e.5 Cancer Medicine

(3) Excerpts: Management of Advanced-Stage Ovarian Cancer; Prescrire Int Feb 2002, Survival in familial, BRCA 1-associated, and BRCA-2-associated epithelial ovarian cancer; United Kingdom Coordinating Committee for Cancer Research, Familial Ovarian Cancer Study Group Cancer Res Feb 1999, Prognostic factors of stage IV epithelial ovarian cancer: a multicenter retrospective study; Gynecol Oncol 2001, Department of Obstetrics and Gynecology, Tohoku University School of Medicine, Sendai, Japan, Long-term follow-up of the Stockholm screening study on ovarian cancer; Gynecology Oncol Dec 2000; Gynecological Department, Radiumhemmet, Stockholm, Sweden

(4) The Benefits of comprehensive surgical staging in the management of early-stage epithelial ovarian carcinoma, Gynecol Oncol May 2002 Le T, Adolph A; Krepart GV; Lotocki R; Heywood MS, Division of Gynecologic Oncology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada

(5) Why American Women are not receiving state-of-the-art gynecologic cancer care Gershenson DM, Department of Gynecologic Oncology, The University of Texas, M.D. Anderson Cancer Center, Houston, Texas, USA Nov-Dec 2001

(6) Surgical Management of Ovarian Cancer, Mutch DG, Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Washington University School of Medicine, St Louis, MO, USA Feb 2002 (excerpt)

(7) Surgical standards in the management of ovarian cancer, Robert E. Bristow, MD Johns Hopkins Hospital and Medical Institutions, Baltimore, Maryland, USA

(8) Surgical Management of Ovarian Cancer David G. Mutch Seminars in Oncology Feb 2002

(9) Implementation of Ovarian Cancer Surgery Guidelines Elit,L, Rosen,B, Anderson G, Thircuchelvan D, Department of Obstetrics and Gynaecology, McMaster University, Department of Obstetrics and gyneaecology, University of Toronto, Health Administration, Faculty of medicine, University of Toronto, Toronto, Research Services Unit, Public Health Science, University of Toronto, Toronto

(10) A Shortage of Medical Oncologists at the McGill University Health Centre Prompts an Aggressive Recruitment Campaign March 2002 McGill University health Centre, Montreal, Quebec

(11) First line chemotherapy in advanced ovarian cancer, Dan Grisaru Oncology Rounds from Princess Margaret Hospital, Toronto, Ontario February 2002

(12) Cancer Survivor Involvement: California Cancer Research Program, Sacramento California, USA 2002

(13) Canadian Institute for Health Research, Ottawa, Ontario - database search Funding years 1999-2003 - All Provinces/All Institutions - All Themes/All Classes/All Areas - Ovarian Cancer - total dollar amount for specified search criteria - $1,956,205

(14) Distinguished Professor Series: Is There any Progress in the Outcome of Patients Suffering from Ovarian Cancer? Treatment Strategies

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