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Sunday, March 12, 2006

Then and Now - 2002 Sandi Pniauskas presentation to the Romanow Health Care Commission of Canada



Submission to the Health Care Commission of Canada

Sandi Pniauskas*
Ovarian Cancer
Patient and Advocate


Public Submission and Presentation: May 30th, 2002 Toronto, Ontario, Canada


May 30th, 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. More disturbing than all of this is this incident. Last year, an ovarian cancer patient saw a general oncologist (not a gynecologic oncologist) because she was having significant symptoms of recurrence. This doctor performed an inappropriate exam and told the patient, who was in emotional and physical distress, to come back in 6 months time for a CT scan. She died before the proposed appointment. I wish I could tell you that these are isolated incidents, but I cannot.

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

2) 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 Since 1957 Albrecht Pfleiderer, Professor Emeritus, Freiburg, Germany Sept 2001

*To whom correspondence and reprint requests should be addressed:
Sandi Pniauskas 117 Glen Hill Drive, Whitby, Ontario, Canada L1N 6Z8
E-mail: sandipn@sympatico.ca

Sunday, March 05, 2006

CBC News: Marketplace - Chasing the Cancer Answer: Wendy Mesley



CBC News: Marketplace

Chasing the Cancer Answer: After fighting the disease herself, Marketplace's Wendy Mesley is asking questions about our rising cancer rates.

She's getting some disturbing answers.

Sunday, February 26, 2006

Sweet Time Unafflicted -- Rayson 20 (23): 4603 -- Journal of Clinical Oncology



Sweet Time Unafflicted -- Rayson 20 (23): 4603 -- Journal of Clinical Oncology

Run for Your Life: The Reaction of Some Professionals to a Person With Cancer -- Amir and Kalemkerian 21 (19): 3696 -- Journal of Clinical Oncology



Run for Your Life: The Reaction of Some Professionals to a Person With Cancer -- Amir and Kalemkerian 21 (19): 3696 -- Journal of Clinical Oncology

Humor and Oncology -- Joshua et al. 23 (3): 645 -- Journal of Clinical Oncology



Humor and Oncology -- Joshua et al. 23 (3): 645 -- Journal of Clinical Oncology

Talking to a Patient -- Meyskens et al. 23 (19): 4463 -- Journal of Clinical Oncology



Talking to a Patient -- Meyskens et al. 23 (19): 4463 -- Journal of Clinical Oncology

What Health Care Providers Learn As Caregivers -- Laverdi�re and Lussier 23 (22): 5260 -- Journal of Clinical Oncology



What Health Care Providers Learn As Caregivers -- Laverdi�re and Lussier 23 (22): 5260 -- Journal of Clinical Oncology

JAMA -- Symptom Experience After Discontinuing Use of Estrogen Plus Progestin, July 13, 2005, Ockene et al. 294 (2): 183



JAMA -- Symptom Experience After Discontinuing Use of Estrogen Plus Progestin, July 13, 2005, Ockene et al. 294 (2): 183

JAMA -- Doctors Need Doctors Too, February 22, 2006, Srivastava 295 (8): 866



JAMA -- Doctors Need Doctors Too, February 22, 2006, Srivastava 295 (8): 866

OWHN - e-Bulletin



OWHN - e-Bulletin

MedlinePlus: Ovarian Cancer



MedlinePlus: Ovarian Cancer

Listen to Radio spot from the U.K. - 'Ovarian Cancer Action'



ACOR Home Page



ACOR Home Page

CBC News Indepth: Health Care



CBC News Indepth: Health Care

ScienceDirect - Social Science & Medicine : At home in hospital? Interaction and stigma in people affected by cancer



ScienceDirect - Social Science & Medicine : At home in hospital? Interaction and stigma in people affected by cancer

Cancer % Private Medical Insurance - Industry Initiatives ‘an Important Step In The Right Direction' But Clarity For Consumers Still Lacking, UK



Cancer % Private Medical Insurance - Industry Initiatives ‘an Important Step In The Right Direction' But Clarity For Consumers Still Lacking, UK

IP Chemotherapy



IP Chemotherapy

GCF-What's New - Ovarian Cancer Survivors Course 2006



GCF-What's New

New Federal Health Initiative to Improve Cancer Therapy



New Federal Health Initiative to Improve Cancer Therapy

Still, a Cruel Diagnosis



Still, a Cruel Diagnosis

ASCO - Prevalence of a positive cancer family history in GI cancer patients in a Canadian province with high rates of cancer



ASCO - Prevalence of a positive cancer family history in GI cancer patients in a Canadian province with high rates of cancer

Patients & Consumers Survey



Patients & Consumers Survey

Discussing Bad News in the Outpatient Oncology Clinic: Rethinking Current Communication Guidelines -- Eggly et al. 24 (4): 716 -- Journal of Clinical



Discussing Bad News in the Outpatient Oncology Clinic: Rethinking Current Communication Guidelines -- Eggly et al. 24 (4): 716 -- Journal of Clinical Oncology

Welcome to the Cancer Advocacy Coalition



Welcome to the Cancer Advocacy Coalition

HighWire Press -- Medline Abstract



HighWire Press -- Medline Abstract

The Scientist : Human experiment guidelines reviewed



The Scientist : Human experiment guidelines reviewed

Patterns of Chemotherapy Use for Women With Ovarian Cancer: A Population-Based Study -- Cress et al. 21 (8): 1530 -- Journal of Clinical Oncology



Patterns of Chemotherapy Use for Women With Ovarian Cancer: A Population-Based Study -- Cress et al. 21 (8): 1530 -- Journal of Clinical Oncology

Years of life lost (YLL) from cancer is an important measure of population burden and should be considered when allocating research funds



Years of life lost (YLL) from cancer is an important measure of population burden and should be considered when allocating research funds

The Cheerful Oncologist :: Within These Hands :: October :: 2005



The Cheerful Oncologist :: Within These Hands :: October :: 2005

Welcome to the DHCC - Division of Health Care Communication



Welcome to the DHCC - Division of Health Care Communication

spiked-health | Article | The absurdity of a 'patient-led' NHS



spiked-health | Article | The absurdity of a 'patient-led' NHS

Risk of Second Primary Cancer and Death Following a Diagnosis of Nonmelanoma Skin Cancer -- Nugent et al. 14 (11): 2584 -- Cancer Epidemiology Biomark



Risk of Second Primary Cancer and Death Following a Diagnosis of Nonmelanoma Skin Cancer -- Nugent et al. 14 (11): 2584 -- Cancer Epidemiology Biomarkers & Prevention

One at a Time -- Siegel 10 (7): 558 -- The Oncologist



One at a Time -- Siegel 10 (7): 558 -- The Oncologist

Towards More Meaningful, Informed, and Effective Public Consultation | Final Research Reports | CHSRF



Towards More Meaningful, Informed, and Effective Public Consultation | Final Research Reports | CHSRF

Using Practice Guidelines to Assess Cancer Care Quality -- Bach 23 (36): 9041 -- Journal of Clinical Oncology



Using Practice Guidelines to Assess Cancer Care Quality -- Bach 23 (36): 9041 -- Journal of Clinical Oncology

ScienceDirect - Gynecologic Oncology : Hormone replacement therapy and the risk of ovarian cancer in BRCA1 and BRCA2 mutation carriers



ScienceDirect - Gynecologic Oncology : Hormone replacement therapy and the risk of ovarian cancer in BRCA1 and BRCA2 mutation carriers

National Cancer Institute - Intraperitoneal Therapy for Ovarian Cancer



National Cancer Institute - Intraperitoneal Therapy for Ovarian Cancer

NEJM -- Intraperitoneal Chemotherapy Comes of Age



NEJM -- Intraperitoneal Chemotherapy Comes of Age

American Cancer Society Guidelines for the Early Detection of Cancer, 2006 -- Smith et al. 56 (1): 11 -- CA: A Cancer Journal for Clinicians



American Cancer Society Guidelines for the Early Detection of Cancer, 2006 -- Smith et al. 56 (1): 11 -- CA: A Cancer Journal for Clinicians

Familial Ovarian Cancer Screening -- Stirling et al. 24 (6): e11 -- Journal of Clinical Oncology



Familial Ovarian Cancer Screening -- Stirling et al. 24 (6): e11 -- Journal of Clinical Oncology

Saturday, February 25, 2006

Find a Gynecologic Oncologist - U.S.



Find a Gynecologic Oncologist - Canada



Prophylactic Surgery to Reduce the Risk of Gynecologic Cancers in the Lynch Syndrome - January 19, 2006 NEJM





Prophylactic Surgery to Reduce the Risk of Gynecologic Cancers in the Lynch Syndrome

Kathleen M. Schmeler, M.D., Henry T. Lynch, M.D., Lee-may Chen, M.D., Mark F. Munsell, M.S., Pamela T. Soliman, M.D., Mary Beth Clark, M.S.W., Molly S. Daniels, M.S., Kristin G. White, B.S., Stephanie G. Boyd-Rogers, R.N., Peggy G. Conrad, M.S., Kathleen Y. Yang, M.D., Mary M. Rubin, Ph.D., Charlotte C. Sun, Dr.P.H., Brian M. Slomovitz, M.D., David M. Gershenson, M.D., and Karen H. Lu, M.D.


ABSTRACT

Background Women with the Lynch syndrome (hereditary nonpolyposis colorectal cancer) have a 40 to 60 percent lifetime risk of endometrial cancer and a 10 to 12 percent lifetime risk of ovarian cancer. The benefit of prophylactic gynecologic surgery for women with this syndrome has been uncertain. We designed this study to determine the reduction in the risk of gynecologic cancers associated with prophylactic hysterectomy and bilateral salpingo-oophorectomy in women with the Lynch syndrome......

Monday, February 20, 2006

2005 Survey of HNPCC Management Analysis of Responses from 18 International Cancer Centres



Survey of HNPCC Management Analysis of Responses from 18 International Cancer Centres

Hereditary Cancer in Clinical Practice 4/2005


Survey of HNPCC Management Analysis of Responses from 18 International Cancer Centres

Hereditary Cancer in Clinical Practice 2005; 3(4) pp. 137-146

authors: Elizabeth Chow, Finlay Macrae, John Burn,



Introduction

HNPCC is an autosomal dominant condition with high penetrance for colorectal and certain other cancers. A mutation in one of the several mismatch repair genes is responsible. Mutational analysis is widely available to guide risk assessment and screening strategies in families with HNPCC. However, there are many management decisions that need to be made where the level of evidence supporting those decisions is low. In September 2003, participants at the International Collaborative Group for Hereditary Non-Polyposis Colorectal Cancer were invited to complete a questionnaire relating to their clinic practices, so as to inform the cancer genetics community about variations and levels of consensus.

Methods

Eighteen centres (three from Australia, nine from the UK, two from the USA, two from Denmark, one from Canada, one from Israel) responded to the questionnaire. The questionnaire covered clinical definitions of HNPCC and high and moderate risk, thresholds for referral to clinics, positioning and funding of pre-genetic testing in clinical management, indications and funding for mutational analysis, consent protocols, counselling relating to variants of uncertain significance, disclosure of genetic testing information across families, surveillance planning for colorectal, gynaecological and other malignancies, and surgical decision making. Responses were generally in the multiple choice format, and where appropriate one or more “correct” answers were allowed. Free text provision (“other”) was liberally provided throughout. The questionnaire was not anonymous. However, as there was no universal agreement from the contributors to identify their own familial clinic's response, the results are presented anonymously.

Results

Results are displayed with reference to the question and the multiple choice response alternatives.
A. Definition
1. In your familial bowel cancer practice, for the purposes of initiating direct mutational analysis (without necessarily requiring evidence of MSI/IHC MMR protein loss), which definition of HNPCC do you accept? (tick any)
a) Amsterdam I
b) Amsterdam II
c) Amsterdam II plus ovarian cancer
d) Amsterdam II plus stomach cancer
e) Amsterdam II plus biliary tract cancer
f) Amsterdam II plus brain cancer
g) Amsterdam II plus breast cancer in hMLH1
h) Amsterdam II plus clear cell cancer of kidney
i) Other---please specify any variation

Saturday, February 18, 2006

2006 Review: Cochrane Collaboration - Intraperitoneal chemotherapy for the initial management of primary epithelial ovarian cancer



Review]
Intraperitoneal chemotherapy for the initial management of primary epithelial ovarian cancer
K Jaaback and N Johnson

The Cochrane Database of Systematic Reviews 2006 Issue 1 (Status: New)
Copyright © 2006 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
DOI: 10.1002/14651858.CD005340.pub2 This version first published online: 25 January 2006 in Issue 1, 2006
Date of Most Recent Substantive Amendment: 15 November 2005

This record should be cited as: Jaaback K, Johnson N. Intraperitoneal chemotherapy for the initial management of primary epithelial ovarian cancer. The Cochrane Database of Systematic Reviews 2006, Issue 1. Art. No.: CD005340. DOI: 10.1002/14651858.CD005340.pub2.

Abstract

Background
Ovarian cancer tends to be chemosensitive and confine itself to the surface of the peritoneal cavity for much of its natural history. These features have made it an obvious target for intraperitoneal chemotherapy. Chemotherapy for ovarian cancer is usually given as an intravenous infusion repeatedly over 5 to 8 cycles. Intraperitoneal chemotherapy (IP) is given by infusion of the chemotherapeutic agent directly into the peritoneal cavity. This may increase the anticancer effect with fewer systemic adverse effects in comparison to intravenous therapy.

Objectives
To determine if adding a component of the chemotherapy regime into the peritoneal cavity affects overall survival, progression free survival, quality of life (QOL) and toxicity for women receiving primary treatment of epithelial ovarian cancer.

Search strategy
The reviewers searched the UK Cochrane trials register, Gynaecological Cancer Group Specialised Register, computer databases and handsearched and cascade searched the major gynaecological oncology journals.

Selection criteria
The analysis was restricted to randomised controlled trials assessing women with a new diagnosis of primary epithelial ovarian cancer, of any FIGO stage, following primary cytoreductive surgery. Standard intravenous chemotherapy was compared with chemotherapy that included a component of intraperitoneal administration.

Data collection and analysis
Two reviewers conducted data extraction independently. The reviewers retrieved data on overall and disease free survival as well as adverse events and QOL and then performed a meta-analysis of outcomes, using hazard ratios for time-to-event variables and relative risks for dichotomous outcomes.

Main results
Eight randomised trials studied 1819 women receiving primary treatment for ovarian cancer. Women were less likely to die if they received an intraperitoneal (IP) component to the chemotherapy (hazard ratio (HR) =0.79; 95% confidence interval (CI): 0.70 to 0.90)and the disease free interval (HR =0.79; 95%CI: 0.69 to 0.90) was also significantly prolonged. There may be greater serious toxicity with regard to gastrointestinal effects, pain and fever but less ototoxicity with the intraperitoneal than the intravenous route.

Authors' conclusions
This analysis establishes the benefit of IP chemotherapy. It increases overall survival and progression free survival from advanced ovarian cancer. The results of this meta-analysis provide the most reliable estimates of the relative survival benefits of IP over IV therapy and should be used as part of this decision making process. However, the potential for catheter related complications and toxicity needs to be considered when deciding on the most appropriate treatment for each individual woman. The optimal dose, timing and mechanism of administration cannot be addressed from this meta-analysis. This needs to be addressed in the next phase of clinical trials.


Plain language summary

Intraperitoneal (IP) chemotherapy for advanced ovarian cancer improves both overall and disease free survival.

Ovarian cancer commonly spreads through the peritoneal cavity and usually responds to intravenous chemotherapy. This review compared the effectiveness of this intravenous chemotherapy to chemotherapy administered directly into the peritoneal cavity. The evidence suggests an improvement in survival if some of the chemotherapy is administered via the intraperitoneal route. The disadvantage is an increase in adverse effects principally relating to the presence of a peritoneal catheter, including pain, catheter blockage, gastrointestinal effects and infection.

Sunday, January 22, 2006

Published Jan 2006: Journal of Gynecologic Oncology - "Not Qualified - A Patient's Perspective" author: Sandi Pniauskas



DOI information: 10.1016/j.ygyno.2005.11.045

http://dx.doi.org/10.1016/j.ygyno.2005.11.045


http://www.sciencedirect.com/science?_ob=ArticleURL&_rdoc=1&_fmt=full&_udi=B6WG6-4J2M1JK-3&_coverDate=01%2F18%2F2006&_cdi=6814&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=1169252&md5=1ceff77e8809e6d057af5644208ab8e4


Letter to the Editor
Published: The Journal of Gynecologic Oncology January 18th, 2006

Not qualified—a patient's perspective


Sandi PniauskasCorresponding Author Contact Information, E-mail sandipn@sympatico.ca

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

Received 31 August 2005. Available online 18 January 2006.


Article Outline

References



Wednesday, August 31, 2005

Let me take this proactive approach in once again advocating on behalf of women with ovarian cancer, their families and caretakers. Furthermore, please allow me to emphasize that, as a consumer, I appreciate and understand the wider ‘picture’. however, I do not accept the status quo. As a short recap, I offer my observations as an ‘informed’ (as opposed to expert) ovarian cancer survivor of 6 years. Prior to the publication of Who should operate on patients with ovarian cancer? An evidence-based review [1], I was in discussion with a number of agencies bringing attention to the lack of current information within certain Canadian databases. I was advised that only MDs could request a review, which prompted my correspondence, as follows:

Ovarian cancer has the highest mortality rate of not only all gynecologic cancers, but all female-specific cancers. There is no screening test, and prophylactic surgery is the recommendation for those at high risk (breast/salpingo-oophorectomy). Ignorance of the facts regarding ovarian cancer, including relative risk factors, is due to our lack of comprehensive up-to-date data collection and transparency in its education/publication.

In the past two decades, there has been no improvement in overall survival rates in ovarian cancer. Improvement has been noted only in the area of median survival rates and to some degree a lessening of treatment related side effects. Emphasis on QOL is a new phenomenon in research, but, in my opinion, results are understated. So, having said this, the paper as below was published August 26, 2005 with a specific focus on the surgical management of ovarian cancer. Surgical management is one of the key factors, albeit not the only one, in improved survival rates in patients with advanced stage ovarian cancer as well as reduced recurrence rates in early stages.

In May 2005 and relevant to the discussion at hand is the published paper Development of ovarian cancer surgery quality indications using a modified Delphi approach [2] authored in part by the Surgical Oncology Program, Cancer Care Ontario. The follow-up management is a key and important factor that has not been addressed. This refers to follow-up management of pre/peri/post-menopausal women with ovarian cancer. To date, there are no guidelines. The question is, who should operate on ovarian cancer patients? The study presents no absolute recommendations, and, therefore, we wait. However, as published May 17, 2005, SEER database was used to analyze follow-up times specific to a number of cancers and should also be an obvious important criteria based, in part, on the study published below.

The threshold year of statistical cure for ovarian cancer was 10.4 years. [3].

So, a number of observations if you will, indicating some interesting and poignant comments:

“Our review followed the methodology established by the 2001 U.S. Preventative Services Task Force (USPSTF) and Canadian Task Force (CTF) guidelines [14,15]. (reference 15 refers to Canadian Task Force on Periodic Health Exam; Ottawa, Canada Communication Group; 1994).”

“No evidenced-based guidelines linking surgical specialty with ovarian cancer outcomes were found within the Cochrane database.”

“The results of Eisenkop et al. (1992) demonstrated the greatest influence of surgical specialty on median survival; 35 months for those operated on by GO (gynecologic oncologist) compared to 17 months for those operated on by ‘other’ surgeons.”

“Mayer et al., which was graded as fair (e.g. level of evidence), found that patients (early-stage) operated on by GO had a 24% improvement in 5-year overall survival (P < 0.05).

In conclusion, with the exception of Cochrane, I am unable to request a comprehensive analysis on ovarian cancer. I would however advise that there is an urgency to do so.

References

[1] K.C. Giede, K. Kieser, J. Dodge and B. Rosen, Who should operate on patients with ovarian cancer? An evidence-based review, Gynecol Oncol, University of Toronto, Canada (2005 (Aug 26)).

[2] A. Gagliardi, M. Fung Kee Fung, B. Langer, H. Stern and A.D. Brown, Development of ovarian cancer surgery quality indicators using a modified Delphi approach, Gynecol. Oncol. 97 (2005), pp. 446–456. Abstract | Full Text + Links | PDF (210 K)

[3] P. Tai, E. Yu, G. Cserni, G. Vlastos, M. Royce, I. Kunkler and V. Vinh-Hung, Minimum follow-up time required for the estimation of statistical cure of cancer patients: verification using data from 42 cancer sites in the SEER database, BMC Cancer 5 (2005), p. 48.


Corresponding Author Contact InformationFax: +1 905 666 0188.

Gynecologic Oncology
Article in Press, Corrected Proof

Copyright © 2006 Elsevier B.V. All rights reserved. ScienceDirect® is a registered trademark of Elsevier B.V.

Tuesday, November 08, 2005

Ovarian Cancer and Us



Ovarian Cancer and Us

November 7, 2005 From Cancer Patient to Cancer Survivor: Lost in Transition



Follow-up needed for cancer survivors

WASHINGTON (AP) -- The nation's 10 million cancer survivors require customized follow-up for years that too few now receive, says a major study that calls for oncologists to create a "survivorship plan" to guide every patient's future health care.

Half of all men and one-third of women in the United States will develop cancer in their lifetimes. Thanks to advances in early detection and treatment, the number who survive has more than tripled over the past three decades.

When active treatment ends, these people's special needs may be just beginning, said the study, released Monday. Yet, the legacy of physical, psychological and social consequences has largely been ignored by doctors, researchers, even patient-advocacy groups, leaving survivors too often unaware of simmering health risks or struggling to manage them on their own, said the report by the Institute of Medicine.

"Successful cancer care doesn't end when patients walk out the door after completion of their initial treatments," said Dr. Sheldon Greenfield of the University of California, Irvine, who led the study for the institute, an arm of the National Academy of Sciences.

Yet, "you fall off a cliff when your treatment ends," said report co-author Ellen Stovall, president of the National Coalition for Cancer Survivorship, who speaks from personal experience as a two-time survivor.

Busy oncologists' priority is to treat patients and they may have little time for the survivor, while physicians who don't specialize in cancer care may not know what special needs survivors have.

"Nobody can take custody," said Stovall, who praises her own doctors but said even they lack information about long-term follow-up for the Hodgkin's disease that first struck her 33 years ago.

"The doctor says you're done" with cancer treatment, she added. "But you're just beginning a whole new phase of your health care. Nobody's got the roadmap for that."

Survivors are at risk of their initial cancer returning or a new one forming, and may need not just screening to detect that but also help handling the inevitable fear.

Then there are the lingering health effects that various cancer treatments can cause: problems with mobility or memory, nerve damage, sexual dysfunction or infertility and impaired organ function. There may be distress over cosmetic changes. Other hurdles include keeping health insurance after that costly first cancer bout and discrimination from employers.

Whether long-lasting effects seem acute or subtle, start to emerge just as treatment ends or not until years later, the report is unequivocal: "Importantly, the survivor's health care is forever altered."

There are ways to avoid or ameliorate cancer's late health effects. But survivors, and their future doctors, have to know they're at risk to take those steps, the report stressed.

For instance, it said, certain dosages of the chemotherapy doxorubicin can damage the heart, and survivors who know they're at risk can have their heart checked and early signs of failure treated.

Some work is beginning to try to provide that kind of survivor care, sparked by the pediatric cancer community. The Children's Oncology Group, a leading research group, developed long-term follow-up guidelines that say every child cancer survivor should be given an explicit treatment record -- complete with physicians' addresses and doses of every drug -- to provide every doctor who treats them in the future.

And the Lance Armstrong Foundation has begun funding centers at some leading hospitals to focus on specialized survivor care.

Monday's recommendations by the Institute of Medicine, chartered by Congress to advise the government on medical matters, is sure to add momentum to those still-fledgling efforts.

Among the recommendations:

  • Every patient completing cancer treatment should be given a customized "survivorship care plan" to guide future health care.
  • That plan should summarize their cancer care down to drug and radiation dosages, cite guidelines for detecting recurrence or new malignancies, and explain long-term consequences of their cancer treatment. It also should discuss prevention of future cancer, and cite the availability of local psychosocial services and legal protections regarding employment and insurance.
  • Specialists and primary care providers should coordinate to ensure survivors' needs are met.
  • Health insurers should pay for this report.
  • Scientists must improve, or in some case create, guidelines on exactly what screenings are needed for different cancers and their therapies.
  • Congress should fund research of survivorship care, to assess their needs and provide evidence for quality care.

Find this article at:
http://www.cnn.com/2005/HEALTH/conditions/11/07/cancer.survivors.ap

Monday, October 24, 2005

Ontario Wait Times - per website 10/24/2005



Gynaecological cancers (e.g. Ovarian and cervical)


http://www.health.gov.on.ca/transformation/wait_times/wt_data/data_ontario.html#

CANCER SURGERY Summary
July 2005
Local Health Integration Network (LHIN) hospital information Median Wait Time (days) Average Wait Time (days) 90% completed within (days)
All Ontario (Hospital Reporting: 35 of 68) 22 34 69
North East 16 23 54
Hamilton Niagara Haldimand Brant (HNHB) 17 22 48
Central 17 21 34
Central East 18 43 63
Waterloo Wellington 20 29 66
Toronto Central 22 36 85
South East 22 24 41
Erie St. Clair 22 28 57
Mississauga Halton 26 54 100
Champlain 27 36 81
North Simcoe Muskoka 28 31 69
North West 28 38 71
South West 38 45 84

CANCER SURGERY - Gynaecological Cancers (e.g. Ovarian and cervical cancers)
July 2005
Local Health Integration Network (LHIN) - Select LHIN name to view all provincial information Median Wait Time (days) Average Wait Time (days) 90% completed within (days)
All Ontario 27 39 86
Erie St. Clair NS NS NS
South West NV NV NV
Waterloo Wellington 61 60 108
Hamilton Niagara Haldimand Brant (HNHB) 22 21 35
Central West 48 54 163
Mississauga Halton 50 68 156
Toronto Central 23 32 71
Central NS NS NS
Central East NV NV NV
South East NV NV NV
Champlain 29 31 62
North Simcoe Muskoka 55 54 90
North East NV NV NV
North West 37 50 111
View shortest wait times in the province for this service
Legend NS = No Service information available , NV = No or Low volume

Excluded Cases

Emergency cases (a situation where a patient arrives through the Emergency Department of a hospital and/or requires immediate treatment due to an imminently life-threatening condition) are excluded from these wait times, with the exception of Cancer Surgery.

How is the data collected?

Except where noted, the data is sent electronically from hospitals directly to the Wait Times Information Strategy Office, where it is analyzed and posted on this web site. To better understand the data on this web site, how it was calculated and its limitations, please read the Wait Times Data Guide.
Why are wait times not reported for all hospitals?

Currently, only hospitals receiving additional funding for extra cases through the Wait Time Strategy are required to report wait times for their key services. There are other hospitals that provide these services, but are not currently required to report their wait times. The long-term goal is to require all hospitals to report wait times on all surgical procedures.

The provincial Wait Times Strategy is currently developing an information system that will measure and report wait times for all patients receiving these services across the province. This system will be in place for approximately 80 per cent of patients by the end of 2006. Until the system is implemented, not all hospitals will be able to report their wait times.

About Wait Times Data

Wait Time Data on this web site comes directly from participating hospitals. The accuracy and currency of the information is entirely dependent on the data hospitals submit. The Ministry of Health and Long-Term Care assumes no liability for the hospital information. To better understand the data on this web site, how it was calculated and its limitations, please read the Wait Times Data Guide.

Sunday, September 11, 2005

2005 The results of treatment of epithelial ovarian cancer after centralisation of primary surgery. Results from North Jutland, Denmark




Gynecol Oncol, September 6, 2005;

Erik Soegaard Andersen, Aage Knudsen, Tove Svarrer, Bente Lund, Kirsten Nielsen, Anni Grove, and Mette Tetsche
Department of Obstetrics and Gynecology, Oncologic Section, Aalborg University Hospital, Denmark.


OBJECTIVE.: The study was performed to evaluate the results of treatment of ovarian carcinoma after the introduction of centralised primary surgery in the County of North Jutland, Denmark. METHOD.: Prospective study of consecutive cases of ovarian cancer undergoing primary surgical treatment at the Gynecologic Oncologic Center after the introduction of centralised primary surgery. Results of treatment recorded up to the date of last examination or death.

RESULTS.: From 1999 to 2002, 107 patients with primary epithelial ovarian cancer underwent primary surgery at the Gynecologic Oncologic Center, Aalborg. This corresponds to 95.5% of patients with invasive carcinoma in the County of North Jutland. All patients with Stage I to Stage IIIB disease had a complete, macroscopically radical cytoreduction performed. In patients with Stage III and IV invasive tumors, the optimal debulking rate was 79.5%, and, in Stage IIIC and IV, the optimal debulking rate was 78.2%. Intra-operative and post-operative complications were generally few. Post-operative death, defined as death within 30 days after surgery, was observed in 4 cases (3.7%). After primary surgery, platinum-based chemotherapy was given in most cases. For Stage I to IV invasive cancer, the median survival was 46 months. In patients with Stage IIIC and IV disease, the median survival was 32 months. In optimally debulked Stage IIIC and IV disease, the median survival was 41 months.

CONCLUSIONS.: The results indicate a survival benefit after introduction of centralised primary surgery. Compared to existing national and regional data on survival in ovarian cancer, the results indicate an increase in median survival for all stages of approximately 15 months. Centralisation of primary surgery to centres with the necessary expertise may be the most significant way to increase survival in ovarian cancer in Denmark

Tuesday, September 06, 2005

Genetic predisposition is reason to screen, new guidelines say



This article unfortunately misses other familial cancer risks such as colorectal and uterine cancers in the family.
Sandi


Genetic predisposition is reason to screen, new guidelines say

Doctors should refer only those women whose family history suggests that they might be susceptible to breast or ovarian cancer for genetic counseling and testing, say guidelines out today from an independent, government-sponsored panel.

About one in 50 U.S. women have such a family history, according to the U.S. Preventive Services Task Force's new recommendations on testing for mutations in BRCA1 or BRCA2 — so-called breast cancer genes that also raise ovarian cancer risk.

'Breast cancer genes' and family history

This is the task force's first set of guidelines on genetic testing.

The panel focused on BRCA testing because, although the technology has been widely available for a number of years, "there was confusion on the part of providers (doctors) and patients about who should get the test," says panel chair Bruce Calonge, chief medical officer of the Colorado Department of Public Health and Environment.

The confusion stems partly from how the test has been marketed to doctors and genetics counselors, Calonge says.

Only a minority of women whose family history indicates they may be susceptible have actually inherited a BRCA mutation, and not all of them will develop cancer, according to the panel.

In women with such a mutation, the risk of developing breast cancer by age 70 is estimated to be 35% to 84% for breast cancer, 10% to 50% for ovarian cancer.

If a BRCA mutation is found, studies show that women can greatly reduce their cancer risk by having their breasts or ovaries removed, the task force writes in the Annals of Internal Medicine.

But evidence is lacking about whether aggressive screening, including MRI, or drugs that reduce breast cancer risk, such as tamoxifen, actually reduce the chances of dying from breast cancer in women with BRCA mutations.

Further research into screening and managing women at high risk for ovarian cancer is also needed, the task force says.

Routinely referring women who do not have an increased-risk family history for genetic counseling and, possibly, testing "clearly has important psychological, ethical and social implications," although those have not been well described by researchers, according to the panel.

Barbara Brenner, executive director of Breast Cancer Action in San Francisco, says, "This set of recommendations, which looks at all the research that's available, says what we've been saying for a long time: The marketing of genetic testing is far too broad."

In an accompanying editorial, Wylie Burke, a University of Washington School of Medicine ethicist, writes that implementing the new guidelines "would require a concerted effort to change current practice."

Taking a family history has long been considered an important part of a medical evaluation, but few doctors gather the detailed information required by the guidelines, Burke writes.

2005 Aug: Gynecol Oncol. 2005 Aug 30; Clinical and pathologic findings of prophylactic salpingo-oophorectomies in 159 BRCA1 and BRCA2 carriers.



Clinical and pathologic findings of prophylactic salpingo-oophorectomies in 159
BRCA1 and BRCA2 carriers.
Gynecol Oncol 2005 Aug 30 PMID: 16137750

Finch A, Shaw P, Rosen B, Murphy J, Narod SA, Colgan TJ
The Centre for Research in Women's Health, 790 Bay Street, 7th Floor, Toronto, ON, Canada M5G 1N8; The Familial Ovarian Cancer Clinic, Princess Margaret Hospital, University Health Network, Canada.

OBJECTIVE.: To estimate the likelihood of occult cancer diagnosis at prophylactic oophorectomy in BRCA1 and BRCA2 carriers in different age groups and to determine the histopathology of these lesions. METHODS.: We describe a series of 159 female BRCA1 or BRCA2 carriers who underwent prophylactic oophorectomy at the University Health Network, Toronto from January 1, 1992 to June 30, 2004.

RESULTS.: Seven (4.4%) occult cancers were detected at pathologic examination. None of the 159 subjects had clinical signs or symptoms of ovarian carcinoma prior to, or at the time of, surgery. Only two cancers were grossly visible at surgery. There were 94 BRCA1 carriers, of whom six were found to have an occult cancer (6.4%). In contrast, only one of the 65 BRCA2 carriers was found to have an occult cancer (1.5%). Three of the seven cases of occult malignancy involved the fallopian tube and not the ovaries.

CONCLUSION.: Approximately 6% of BRCA1 carriers and 2% of BRCA2 carriers who undergo prophylactic salpingo-oophorectomy will be found to have occult carcinomas if the ovaries and tubes are rigorously examined. A significant proportion of these appear to originate in the fallopian tube. No cancers were detected among women who had the operation at age 39 or younger.

2005 Erythropoietin Use in Cancer Patients: A Matter of



Erythropoietin Use in Cancer Patients: A Matter of
Life and Death?

Monday, September 05, 2005

2005 EDITORIALS: It is Time to Get Serious About Diagnosing Lynch Syndrome



"Although patient-reported family cancer histories appear
to be accurate and valuable for colorectal cancer risk
assessments, nearly one half of oncologists fail to document
a comprehensive family history, and among those
that do, few take appropriate action if it is positive with
respect to referral for genetic evaluation."

Hereditary nonpolyposis colorectal cancer (HNPCC),
also called Lynch syndrome after Henry T. Lynch,
MD, a pioneer in the field, is an autosomal dominant
hereditary cancer syndrome, which accounts for upwards
of 3% of all colorectal cancers and is associated with
an increased risk of endometrial, ovarian, and other extracolonic
cancers. Colorectal cancer can be averted in
Lynch syndrome by early an intensive surveillance, and
has been shown to be cost-effective. The syndrome
originally was defined in clinical terms by the stringent
Amsterdam criteria, although over time more relaxed
clinical definitions have been suggested, culminating in
the recently published revised Bethesda guidelines.

New York Times/Aug 16th, 2005: In the Hospital, a Degrading Shift From Person to Patient



Stop being a good girl, she says; you've got a mouth; you should use it. Have someone with you at all meetings with doctors, if possible. And take notes.

"Otherwise," she said, "you cease being a person and become 'the carcinoma in Room B-2,' like I was."

August 2005: Who should operate on Ovarian Cancer?



ARTICLE IN PRESS
Review
Who should operate on patients with ovarian cancer?
An evidence-based review

Kurt Christopher Giede*, Katharina Kieser, Jason Dodge, Barry Rosen
University of Toronto, Canada
Received 5 June 2005

Abstract
Objective. To evaluate the relationship between surgical specialty and survival in patients receiving initial surgical management for
ovarian epithelial cancer.

Study methods. An analytic framework was constructed to address the principle question Fdoes the type of surgeon operating on patients
with newly diagnosed ovarian epithelial cancer influence survival?_ A literature search addressing the components of this analytic framework
was carried out using the Cochrane Library, Medline, EMBASE, and HealthSTAR databases. Relevant articles were selected and graded
using U.S. Preventive Services Task Force and Canadian Task Force guidelines. Results were summarized by quality as well as level of
evidence.

Results. Eighteen studies were reviewed. The quality of evidence was good in 3, fair in 8, and poor in 7 of the studies. The most common
study flaws encountered were Ffailure to account for confounders_ and Fincompleteness of data_. In studies focusing on advanced disease,
there was good quality evidence to support a 6- to 9-month median survival benefit for patients operated on by gynecologic oncologists rather
than general gynecologists and/or general surgeons ( P values 0.009 to 0.01). Studies focusing on early stage disease found gynecologic
oncologists more likely to carry out optimal staging ( P values 0.001 to 0.01). Increased survival could be explained by improved
identification of true stage I patients.

Conclusion. Patients receiving initial surgical management for ovarian epithelial cancer should be operated on by gynecologic
oncologists.


Gynecologic Oncology xx (2005) xxx – xxx
www.elsevier.com/locate/ygyno
YGYNO-971157; No. of pages: 15; 4C:
DTD 5
ARTICLE IN PRESS

Introduction

In the past two decades, there has been increasing interest
in the relationship between surgical specialty and outcomes
in cancer treatment [1].
Surgical specialty has been shown to have a positive
influence on outcomes in a variety of cancers [1–6]. In
ovarian cancer, a relationship between sub-specialty training
and survival has been suggested [1].
Although recommendations and guidelines on the
management of ovarian cancer exist [7–13], to date, there
have been no thorough evidence-based reviews specifically
addressing the question Fdoes the type of surgeon operating
on patients with newly diagnosed ovarian epithelial cancer
influence long-term survival?_
The following review was conducted not only to examine
the quantity but also the quality of evidence regarding a
possible relationship between surgical specialty and survival
outcomes in ovarian cancer.

Methods
Our review followed the methodology established by
the 2001 U.S. Preventive Services Task Force (USPSTF)
and Canadian Task Force (CTF) guidelines [14,15]. An
analytic framework was constructed in order to better
understand the influence of surgical specialty on survival
in patients with newly diagnosed ovarian epithelial cancer
(Appendix Fig. 1). This framework was built around the
principle or Foverarching question_ Fdoes surgical specialty
influence survival in patients being operated on for newly
diagnosed ovarian epithelial cancer?_ The population of
interest was women with newly diagnosed ovarian
epithelial cancer in whom initial management was
surgical. The intervention of interest was the type of
surgeons operating on patients and included general
surgeons (GS), general gynecologists (GYN), and gynecologic
oncologists (GO). The principle outcomes of interest
were median and 5-year overall survival. Additional
outcomes important to the analysis included degree of
cytoreduction and proportion of patients with optimal
cytoreduction.
To facilitate the stage-dependent surgical approach to
ovarian cancer, the analytic framework was divided into two
parts: part 1 representing patients with advanced disease
requiring cytoreduction and part 2 representing patients with
early disease requiring accurate staging.
The goal of Part I of the framework was to address the
question Fdo patients with advanced stage ovarian epithelial
cancer who receive upfront surgical debulking have
different survival rates when operated on by GO, GYN, or
GS?_ The analytic framework for Part 1 also examined the
link between patients and survival by addressing two
questions:

1. Is the proportion of patients with optimal cytoreduction
influenced by surgical specialty? (Link 1)
2. Do patients who have optimal cytoreduction have an
improved survival? (Link 2)
The goal of Part II of the framework was to address
the question Fdo patients with early stage disease have
different survival when operated on by GO, GYN, or
GS?_
This part of the analysis also looked at a potential link
between patients with early stage disease and improved
survival by addressing the following questions:
1. Is the proportion of patients who receive complete or
comprehensive staging surgery influenced by surgical
specialty? (Link 1)
2. Do patients who have full staging surgery have an
improved survival? (Link 2)
The final component in each part of the framework
addressed potential adverse effects of exposure to different
types of surgeons.
Inclusion/exclusion criteria were set up to identify
articles pertinent to those components of the analytic
K.C. Giede et al. / Gynecologic Oncology xx (2005) 2 xxx –xxx


Results
Literature search
No evidence-based guidelines linking surgical specialty
with ovarian cancer outcomes were found within the
Cochrane database. The Medline search revealed 109
potential articles, of which 33 abstracts were selected for
review. Two additional abstracts were found when the
search was repeated in EMBASE, but no additional
abstracts were found in HealthSTAR.
From these 35 abstracts, 15 met the inclusion criteria for
review. Cross-referencing of existing reviews provided 3
additional studies for review. Thus, a total of 18 articles met
the inclusion criteria for review.


Discussion
The past three decades have brought advances in both the
medical and surgical management of ovarian epithelial
cancer [41]. Unfortunately, these advances have had little
impact on long-term survival [42], leaving ovarian cancer as
the leading cause of gynecologic cancer related mortality in
North America [43]. It is therefore imperative that we
understand where inroads have been made in order that we
maximize patient access to those treatments responsible for
improving outcome.

At the beginning of the 20th century, women with
ovarian cancer were operated on primarily by general
surgeons and general gynecologists [45]. It was not until
1970 that subspecialty training in gynecologic oncology was
established in the United States [46]. Such training has been
introduced even later to Europe [45,23,24]. Our review of
the relationship between surgical specialty and survival
outcome covers this transition period. In fact, several of the
studies we reviewed looked at the regional impact of
changing policies regarding the management of ovarian
cancer [23,24,26].

Guidelines and recommendations on managing patients
with ovarian cancer do exist. Although strongly advocating
that patients be treated by gynecologic oncologists, the
majority of these guidelines are not evidence-based
[12,13].

Evidence-based guidelines on the management of
patients with adnexal masses have recently been put forth
by the Society of Gynecology and Obstetrics of Canada [8].
In these guidelines, it has been recommended that all
patients with ovarian cancer have access to comprehensive
staging and optimal cytoreductive surgery. Unfortunately,
this review does not access who should perform that surgery
nor does it comment on the Fquality of evidence_ leading to
those recommendations.
We used the most recent USPSTF and CTF guidelines on
evidence-based reviews to access the internal validity of
each study reviewed [14,15]. Using this system allowed us
to make recommendations based on good quality of
evidence.
With this approach, we found good quality of evidence
demonstrating a 6- to 9-month median survival benefit for
patients operated on by gynecologic oncologists (P values
0.009 to 0.01) [23,32]. There was also good quality
evidence that the proportion of patients receiving optimal
cytoreductive surgery was significantly increased in patients
operated on by gynecologic oncologists [23,32]. Although
we did not conduct a full review of the link between
survival and degree of cytoreduction, we felt that existing
meta-analyses of this topic demonstrated that patient
populations with increased rates of optimal cytoreduction
had improved median survival rates [35,46].
For patients with early stage disease, we found good
quality of evidence to support a decreased recurrence rate
in patients receiving comprehensive staging [26]. There
was also fair quality evidence to support a 24% improved
survival rate in patients receiving comprehensive staging
by a gynecologic oncologist [27]. Furthermore, fair
quality of evidence demonstrated that gynecologic oncologists
were more likely to carry out comprehensive
staging [28].

We did not find evidence that comprehensive surgery
itself improves patient survival. Nevertheless, good data
from randomized trials clearly demonstrate the benefit of
full staging surgery [38,39]. Decreased recurrence rates and
subsequent improved survival are in large due to the ability
of comprehensive surgery to separate those patients with
true stage I disease from those with microscopic stage III
disease. It is the latter patient who benefits the most from
adjuvant chemotherapy.


Limitations
There were several limitations to our review. First, the
degree of heterogeneity among the patient populations,
surgical interventions, and reported outcomes made it
untenable to conduct a meta-analysis of the reported results.
Second, all the studies reviewed represented level II-b
evidence. However, well-designed cohort studies may be of
more value then poorly designed randomized studies [14].
That the majority of studies reviewed were conducted
by gynecologic oncologists could have led to self-interest
and publishing bias. However, the demonstration that
general gynecologists achieving higher rates of optimal
cytoreduction also had improved survival rates supports a
biological explanation for improved outcomes. Thirdly, our
review did not address the use of neoadjuvant chemo-
K.C. Giede et al. / Gynecologic Oncology xx (2005) xxx– xxx 7


Finally, the mere existence of guidelines does not
guarantee their application. Munoz et al. (1997) provided
a good review of patterns of care for women with ovarian
cancer in the United States [47], demonstrating that, even
with the existence of guidelines, only 10% of patients with
early stage disease, 71% of patients with stage III disease,
and 53% with stage IV disease received recommended
management. It is our hope that, with increasing emphasis
on evidence-based guidelines and increased physician
awareness of recommendations, these practices will change
for the better.

Conclusion
There is good level II-2 evidence demonstrating the
following:
1. Patients with advanced disease operated on by gynecologic
oncologists are more likely to receive optimal
cytoreductive surgery.
2. Patients with advanced disease operated on by gynecologic
oncologists have an improved median and overall
5-year survival.
3. Patients with advanced disease operated on by general
gynecologists can have survival equal to patients
operated on by gynecologic oncologists if rates of
cytoreduction are equal.
4. Patients with early stage disease are more likely to have
comprehensive staging when operated on by gynecologic
oncologists, allowing for better selection of patients
requiring adjuvant chemotherapy.

We conclude that patients with both advanced and early
stage ovarian epithelial cancer should be operated on by
specialists trained in Gynecological Oncology (level A and
level B recommendations based on good level II-2
evidence).

Management of HNPCC (Lynch Syndrome) cancer patients as per Myriad Labs



Please note: there are no standard practice guidelines for the managment of Lynch syndrome patients and the followup of these patients may vary depending on your location/healthcare institution. In addition, family history is still the most important criteria irrespective of a negative test result.
Sandi

Following a positive test result, preventive measures such as these can be taken. This type of ongoing surveillance may lead to early detection and intervention which may, in turn, positively impact outcomes for HNPCC patients.


Risk Reduction

Increased Surveillance for Colorectal Cancer

Colonoscopy every one to two years beginning at age 20-25 or 5-10 years before the earliest age of a diagnosed colorectal cancer in patient's family, whichever comes first. Colonoscopy annually after age 40.24, 52, 53


Surgical Management for Colorectal Cancer
If colon cancer is diagnosed (or if more than one advanced adenoma is found) in a patient with HNPCC, total colectomy with ileorectal anastomosis OR hemicolectomy are the recommended surgical procedures, rather than segmental colectomy.54
In carefully selected patients, (i.e. those not willing or able to undergo periodic screening) prophylactic total colectomy with ileorectal anastomosis may be presented as an option based on carrier status alone.24, 54

Increased Surveillance for Endometrial Cancer
Gynecologic exam, transvaginal ultrasound, endometrial aspiration, and CA-125 every one to two years, beginning at age 25-35.24, 52

Surgical Management for Endometrial and Ovarian Cancer

Prophylactic total abdominal hysterectomy and bilateral salpingo-oophorectomy may be considered if colorectal cancer is detected and may also be considered as an option when childbearing is concluded (especially if bleeding or other symptoms of uterine or ovarian disease occur).24, 54


Increased Surveillance for Other HNPCC-Related Cancers
The following screening may be recommended based on the patient's family history.21, 24
For stomach cancer, gastroscopy every one to two years starting at age 30-35.
For urinary tract cancer, ultrasonography or urine cytology every one to two years starting at age 30-35.

HNPCC cancer risks (updated 2005) - now known as the Lynch Syndrome



People with an HNPCC gene mutation have greater than a 90 percent lifetime risk of developing some type of cancer.28 These individuals not only have an increased risk of colorectal and endometrial cancers, but also other cancers listed below:

Cancer Type Mutation
Carrier Risk1, 35
General
Population Risk
Colorectal Up to 82% 2%
Endometrial Up to 71% 1.5%
Stomach Up to 13% <1%
Ovarian Up to 12% 1%

* Patients with HNPCC may also have a slightly elevated risk of the following cancers when compared to the general population: ureter/renal pelvis, biliary tract, small bowel, pancreas, brain and sebaceous adenomas.

Individuals with HNPCC who have already been diagnosed with cancer also have an increased risk of developing a second cancer. In these patients, there is a 30 percent risk of a second cancer developing within 10 years of initial diagnosis and a 50 percent chance of a second cancer developing within 15 years of initial diagnosis.

2005 August: Hormone replacement therapy and the risk of ovarian cancer in BRCA 1/2 mutation carriers



http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16137751
Gynecol Oncol. 2005 Aug 30

Hormone replacement therapy and the risk of ovarian cancer in BRCA1 and BRCA2 mutation carriers.

Kotsopoulos J, Lubinski J, Neuhausen SL, Lynch HT, Rosen B, Ainsworth P, Moller P, Ghadirian P, Isaacs C, Karlan B, Sun P, Narod SA.
Centre for Research in Women's Health, 790 Bay Street, 7th Floor, Women's College Hospital, University of Toronto, Toronto, Ontario, Canada M5G 1N8; Department of Nutritional Sciences, University of Toronto, Ontario, Canada.

OBJECTIVE.: Hormone replacement therapy (HRT) is commonly prescribed to alleviate the climacteric symptoms of menopause. Recent findings from the Women's Health Initiative has raised questions about the routine use of HRT due to the increased observed incidence of cardiovascular disease and of breast and ovarian cancers in the treatment arm of the trial. In the general population, the association between HRT use and risk of ovarian cancer has not yet been resolved. This association has not been evaluated in BRCA1 or BRCA2 mutation carriers who face very high lifetime risks of both breast and ovarian cancers.

METHODS.: We conducted a matched case-control study on 162 matched sets of women who carry a deleterious mutation in either the BRCA1 or BRCA2 gene. Women who had been diagnosed with ovarian cancer were matched to control subjects by mutation, year of birth, and age at menopause. Information on HRT use was derived from a questionnaire routinely administered to women who were found to be carriers of a mutation in either gene. Conditional logistic regression was used to estimate the association between HRT use and the risk of ovarian cancer, stratified by mutation status and type of HRT.

RESULTS.: Compared with those who had never used HRT, the odds ratio associated with ever use of HRT was 0.93 (95% CI = 0.56-1.56). There was no significant relationship with increasing duration of HRT use. There was a suggestion that progestin-based HRT regimens might protect against ovarian cancer (odds ratio = 0.57) but this association was not statistically significant (P = 0.20). CONCLUSION.: HRT use does not appear to adversely influence the risk of ovarian cancer in BRCA mutation carriers.

2005 September: Hormone Replacement therapy after cancers



http://makeashorterlink.com/?K51452CBB
ARTICLE LINKS:

Hormone replacement therapy after cancers.
Current Opinion in Oncology. 17(5):493-499, September 2005.
Creasman, William T

Abstract:

Purpose of review: The role of female hormones in estrogen-dependent cancers has been debated for years. This is particularly true of breast cancer. Retrospective, case, and cohort control studies usually have suggested no influence.

The Women's Health Initiative study in 2002, a prospective double-blind study, noted an increased risk of breast cancer if estrogen plus progesterone was given.

In the estrogen-only arm of that study, a decreased (not significant) risk of breast cancer was noted. With this controversy, can estrogen be given safely to a woman who has been treated for breast cancer? The relation between endometrial cancer and unopposed estrogen is well established. With clear-cut evidence of this relation, is there evidence to suggest a role for replacement therapy in women who have been treated for endometrial cancer?

Recent findings: Several case-control and cohort studies have noted either no increased risk or actually less risk of recurrence in women taking estrogen after therapy after breast cancer. Although the general consensus is that such a recommendation is contraindicated, the data do not support this admonition. The current data suggest that replacement therapy can be given to the woman who has been treated for endometrial cancer.

Summary: There seems to be little if any risk in giving hormone replacement therapy to women who have had breast or endometrial cancer. There are no data to suggest that hormone replacement therapy is contraindicated in women who have been treated for cervical or ovarian cancer.

Tuesday, August 30, 2005

excerpts "I am a good patient, believe it or not" 2003



http://bmj.bmjjournals.com/cgi/reprint/326/7402/1293.pdf
I am a good patient, believe it or not
Alejandro R Jadad, Carlos A Rizo and Murray W Enkin

BMJ 2003;326;1293-1295
doi:10.1136/bmj.326.7402.1293
What service might “good patients” of the future expect from their dcotors? We asked a team of clinicians for their views.

The good patient of the future will:
■ Bring lists of questions to the
consultation and will expect answers
in clear terms
■ Know how involved they want to
be in decisions about their health
care; most will choose to share
decisions with their healthcare
providers
■ Have free access to their health
record on paper or through
electronic means and will use it or
share it as they see fit
■ Request and receive a second
opinion whenever they face a major
diagnosis or decisions about
treatment
■ Use telephone, internet, and other
forms of communication to
complement personal visits with
members of the healthcare team
What Patients Want from their Doctors:
Patients want many
things from their doctors,
not all of which are
possible. Mike Stone,
director of the UK’s
Patients Association, lists
what he believes patients
want from their doctors.
Eye contact
There is nothing worse
than walking into a
consulting room and
not getting any eye
contact from the
doctor. It happened to
me only last week. I
knocked on the door to
be greeted with
“Come” and to find the
doctor sitting looking
at his computer screen.
He continued to do so
while asking why I had
come to see him.
Partnership
Patients want to be
people who doctors do
things with, not people
that doctors do things
to. Patients want to be
consulted about their
condition, their
treatment, and how
things will progress
from the consultation.
Communication
Communication from
doctor to patient and
vice versa is the key to
a successful
consultation. Many
patients still feel that
they are entering “alien
territory” when they go
to see their doctor. In
many cases they are
scared, they don’t
understand what the
doctor is saying, and
they are not able to
take everything in that
they are told. Just as
doctors may have
trouble understanding
a patient’s explanation
of symptoms, so
patients may have
trouble understanding
a doctor’s explanation
of the diagnosis.
Time
Patients want to spend
more time with their
doctor: they want time
to be able to explain
things and have things
explained to them. We
all know that there is a
shortage of doctors,
and we know that a
doctor’s time is
valuable. However, if
one wish could be
granted for patients it
would be for more time
with their doctor.
Appointments
Patients want to get to
see their doctor within
a reasonable time; not
weeks, but rather a few
days, or, in the case of
a person who is unwell,
a few hours if possible.