H E L P!!! We know it’s Grey Cup weekend, and Christmas is coming, and we’ve all got better things to do. But, imagine in the middle of all this our Ministry of Health, without any consultations or even contacting the doctors with urgent and critical issues CANCELLED the meeting where they promised they would finally have a solution for us.
You know that for over a year now, since spring 2008, we’ve been asking for proper support for our gynecologic oncologists serving southern Saskatchewan. In every other jurisdiction these specialists working in a clinical setting (i.e. a hospital!) with proper medical, nursing, pathology, radiology support. But OH NO, not in Regina! Here we expect these doctors to continue struggling to find simple office space to examine their patients and keep files. They have to go out and find their own nursing, after hours and medical support. This is beyond BIZARRE! In the medical issues business, this has got to be something we can actually figure out and fix? No?
Last meeting, I presented a solution for the interim. Reimburse the doctors immediately for their private practice space, get a proper nurse in their for them. This is minimal, while a real solution is sought. Gov’t response – NONE, NADA.
This meeting was put off because not only is there no solution yet, no one has even contacted the doctors, visited them, observed their needs, nothing. NADA. Do we want/need these specialists - highly sought out and highly skilled experts who need to be in the operating room or examining patients – to be out looking for appropriate office space, trying to figure out how to PAY for it, recruiting for their own support staff, filling the supply cabinets????
Remember in the spring when a Regina gyne onc told the media that the working conditions had become unworkable? This meant the specialists were considering closing their private practices. This meant patients had to be shipped out of Regina? Well – they were told a lot of promises, as was OCATS. They were told a solution would come before Sept 1st, then they said oh that was summer; we’ll get it done by fall. Well fall has been deferred til next year! Enough is Enough!!!! Evidently the only time the Ministry seriously listens is when women in large numbers speak loudly. The legislative assembly will be sitting for only a few more days.
P l e a s e h e l p u s s p e a k l o u d l y !
Write to:The Honourable Don McMorris, Minister of Health, Government of Saskatchewan, Minister's Office, Room 302, Legislative Building, 2405 Legislative Drive, Regina, SK, S4S 0B3, Fax (306) 787-0237,minister.he@gov.sk.ca, sophie.ferre@gov.sk.ca
And Copy to: Dwain Lingenfelter, Leader of the Official Opposition and Opposition Health Critic, Judy Junor, c/o Dwight Yasinowsky at dyasinowski@ndpcaucus.sk.ca
Dear Minister – Ovarian cancer patients don’t have enough time for this continue bureaucratic fumbling. There are highly paid administrators and executives are various levels who should be able to resolve the issue of poor working conditions for Gynecologic Oncologists serving Southern Saskatchewan. Enough is enough. At minimum get these specialist’s office space and support staff in place and paid for before the end of the year.
"At the moment, there is a giant disconnect between patients, the cost of care and the clinical benefit of the treatment -- a disconnect that has caused us to lose perspective. When it comes to cancer care, we're not getting what we pay for. Cancer medicine is often regarded as an area of significant progress and clinical research, so we should be able to tell without much difficulty what kinds of treatment are valuable and what kinds aren't.
But given that 80 percent of my patients will die of their cancer, it's clear that we have not found an "optimum" therapy."
Phase III trial of observation versus six courses of paclitaxel in patients with advanced epithelial ovarian cancer in complete response after six courses of paclitaxel/platinum-based chemotherapy: final results of the After-6 protocol 1
Comments from Clinical Raters Gynecology This article clarifies a terrible doubt of gynecological oncologist: a consolidation treatment with six cycles of paclitaxel does not prolong progression-free survival or overall survival in patients in complete response after first-line paclitaxel/platinum–based regimens.
Oncology - Gynecology Definitive answer on this question should come from a GOG trial that is currently still accruing. Consolidation remains an option, with conflicting Ph3 trial results.
Cancer Management Handbook, 11th Edition » Chapter 22:
Cancer Management: A Multidisciplinary Approach, 11th Edition (2008). Chapter 22 Ovarian Cancer Stephen C. Rubin, MD, Paul Sabbatini, MD, and Akila N. Viswanathan, MD, MPH
Counterpoint: No 'magic' involved in naturopathic medicine Posted: November 27, 2009 Counterpoint, naturopathy
Progress often faces resistance. Even with the substantial challenges facing health care in Ontario, the province’s recent decision to award prescribing authority to naturopathic doctors has its critics, as evidenced by Scott Gavura’s op-ed piece in Nov. 24th’s National Post (“A Prescription for Quackery”).
Ontario’s decision is a step forward in improving patient care by allowing naturopathic doctors to use their training to help address the substantial health challenges facing Ontario.
BRCA1 5272-1G>A and BRCA2 5374delTATG are founder mutations of high relevance for genetic counselling in breast/ovarian cancer families of Spanish origin
World J Gastroenterol Peutz-Jeghers syndrome (PJS) is an inherited, autosomal dominant disorder distinguished by hamartomatous polyps in the gastrointestinal tract and pigmented mucocutaneous lesions. Prevalence of PJS is estimated from 1 in 8300 to 1 in 280000 individuals. PJS predisposes sufferers to various malignancies (gastrointestinal, pancreatic, lung, breast, uterine, ovarian and testicular tumors).
ACP urges Congress, the administration, and patient and physician advocacy groups to respect and support the importance of protecting evidence-based research by respected scientists and clinicians from being used to score political points that do not serve the public's interest.
"More and more, Canadians view themselves as consumers of health care, not mere patients." "Half of those surveyed said they’d like access to a secure Internet site that lets them schedule doctors’ visits, see their own medical records or order their own prescription refills."
Too few second-generation women had been born in the 1930s to analyze a trend, but second-generation women born in every subsequent decade at least tended to have an earlier age at breast cancer diagnosis than their affected relatives:
* For those born in the 1940s, age at onset averaged 46.5 (range 32 to 57), versus 50 (range 32 to 68) in the prior generation (P=0.13). * For those born in the 1950s, age at onset averaged 43.5 (range 20 to 53), versus 50 (range 33 to 70) in the prior generation (P<0.001). * For those born in the 1960s, age at onset averaged 38.5 (range 21 to 43) , versus 39.5 (range 23 to 64) in the prior generation (P=0.03). * For those born in the 1970s, age at onset averaged 31 (range 25 to 35), versus 44.5 (range 34 to 64) in the prior generation (P<0.001).
The researchers cautioned that recall bias related to age at diagnosis may have limited the results, along with inability to test whether all breast and ovarian cancers were correctly attributed to BRCA mutations in the older generations.
Ovarian endometrioma could be viewed as a neoplastic process, particularly in perimenopausal women. Understanding the mechanisms of the development of endometriosis and elucidating its pathogenesis and pathophysiology are intrinsic to the prevention of endometriosis-associated ovarian cancer and the search for effective therapies.
Planning for Investments in Support of the Seriously‐ill and Dying as a Public Policy Response to Sustaining Canadian Productivity, Economic Competitiveness and Quality‐of‐Living
contact number Call (800) 422-6237 for more information Related Topics
* Cancers * Women's Health
Clinical Trials Information The NIH funds research studies that you may be able to join. Visit clinicaltrials.gov for a list of ongoing clinical trials. This page was last reviewed on 7/10/2009
"News of the new recommendations from the US Preventative Services Task Force (USPSTF) stating that average risk women need not start regular mammography screening until age 50 has exploded all over the media......"
"To continue being blunt, it’s all about how doctors andpatients relate to one another. And the problem with a difficultpatient isn’t just the patient. It’s also the doctor.Difficult patients and their frustrated physicians fail eachother. We flop together. We lose hope. And there is no moreworthless doctor than one who has lost all hope. Same holdstrue for a patient."
Prevalence Fifteen-year prevalence for all the rare tumours, except the Epithelial Tumours of Cervix Uteri, were under the 50 per 100,000, that is the cut off utilized in Europe for the definition of rare disease. By contrast, Epithelial Tumours of Oesophagus, Pancreas, Ovary and Stomach have prevalence rates lower than 50 per 100,000 but annual incidence rates higher than 6 per 100,000. These four tumors are then classified as frequent according to our incidence-based definition, but rare according to the standard EU prevalence-based criterion. All these tumours have very poor survival and therefore low prevalence figures, even in presence of a relatively high risk of occurrence, at least for the European population.
"ResearchMatch will match any interested individual residing in the United States with researchers who are approved to recruit potential research volunteers through the system. After an individual has self-registered to become a volunteer, ResearchMatch’s security features ensure that personal information is protected until volunteers authorize the release of their contact information to a specific study that may be of interest to them. Volunteers are notified electronically when they are a possible match and then make the decision regarding the release of their contact information. It also will promote choice as there are no obligations on the volunteer to participate in studies."
In conclusion, the current body of evidence, which is inadequate for several sites, suggests no association between alcohol consumption and risk of gynecological cancers.
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.
PamWest, 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 atime 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
SandiPniauskas
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, GynecolOncol May 2002 Le T, AdolphA; KrepartGV; LotockiR; 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. AndersonCancerCenter, 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 DavidG.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 McGillUniversity health Centre, Montreal, Quebec
(11) First line chemotherapy in advanced ovarian cancer, Dan Grisaru Oncology Rounds from PrincessMargaretHospital, Toronto, Ontario February 2002
(12) Cancer Survivor Involvement: California Cancer Research Program, SacramentoCalifornia, USA2002
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 ProfessorSeries: Is There any Progress in the Outcome of Patients Suffering from Ovarian Cancer? Treatment Strategies Since 1957 AlbrechtPfleiderer, ProfessorEmeritus, Freiburg, Germany Sept 2001
*To whom correspondence and reprint requests should be addressed:
Sandi Pniauskas 117 Glen Hill Drive, Whitby, Ontario, CanadaL1N 6Z8
Cancer patients, while valuing research, will also explain that once you have had a cancer diagnosis there is no such thing as 'over-diagnosing'. It is often too sad that we need to mention 'once you have had'. Medicine is not black and white and who do we lose in the process of these 'averages' which is the basis/formulas which research is focused. Fortunately or unfortunately breast, prostate and colo-rectal cancers have screening mechanisms - good or bad. For most cancers there are none. For those cancers which do not have screening tests available, the patients would love to be having this discussion.
CONCLUSION: The regimen of carboplatin, paclitaxel, and bevacizumab with maintenance bevacizumab is feasible, safe, and worthy of future study in advanced ovarian cancer.
We failed to detect any significant association between fibrinolysis gene polymorphisms and the incidence of ovarian cancer in any histological subtype. If the fibrinolytic pathway is involved in ovarian cancer, the risk does not appear to be influenced by functional polymorphisms in the key genes. However, given the previous studies, which report a possible role for these enzymes in the initiation or progression of cancer, it may be that variation in the expression of the proteins in the fibrinolytic system remains relevant for ovarian carcinogenesis.
Physicians and laboratory professionals reported being enthusiastic about the value of MOT for cancer care but many did not believe that patients in their care were gaining adequate access to clinically necessary testing. Further, our results suggest that many respondents were ill equipped as individual stakeholders, or as a coordinated system of referral and interpretation, to provide MOT. These challenges, together with perceived funding shortfalls, should inspire educational, training and other interventions to ensure that developments in molecular oncology can result in optimal cancer care.
Nov. 11 (Bloomberg) -- Researchers say trials of Pfizer Inc.’s Neurontin epilepsy treatment for uses that were not yet approved may have been skewed to emphasize favorable results.
Welcome to ResearchMatch ResearchMatch is a Clinical and Translational Science Awards (CTSA) initiative funded by the National Center for Research Resources, part of the National Institutes of Health.
The time has likely come to end our Byzantine discussions
about whether and how to measure the quality of
online health information. The public has moved on.
Groups, mainly led by patients, are now beginning to take matters into their own hands to address problems that the health system has continued to ignore.
Authors' conclusions: No conclusive evidence was found to determine whether IDS between cycles of chemotherapy would improve or decrease the survival rates of women with advanced ovarian cancer, compared with conventional treatment of primary surgery followed by adjuvant chemotherapy. IDS appeared to yield benefit only in the patients whose primary surgery was not performed by gynecologic oncologists or was less extensive. Data on QOL and adverse events were inconclusive.
Response to Robert G. Resta Commentary (Unprepared, Understaffed, and Unplanned: Thoughts on the Practical Implications of Discovering New Breast and Ovarian Cancer Causing Genes
Gynecol Oncol. 2009 Oct 29
Current state of biomarker development for clinical application in epithelial ovarian cancer.
Moore RG, Maclaughlan S, Bast RC Jr. Program in Women's Oncology, Department of Obstetrics and Gynecology, Women and Infants' Hospital, Alpert Medical School, Brown University, Providence, RI, USA.
Each year in the United States over 15,000 women die of epithelial ovarian cancer (EOC) and 22,000 are diagnosed with the disease. The incidence of ovarian cancer has remained stable over the past decade however, survival rates have improved steadily. Increases in survival rates can be attributed to the advances in surgical management, development of effective cytotoxic drugs and the route of administration of chemotherapy. Ovarian cancer survival rates could also be improved through screening and early detection. Disappointingly, effective screening methods have not been established and continue to be elusive. Historically the goal of a screening test was to achieve a positive predictive value (PPV) greater than 10% in order be considered cost effective and have an acceptable risk for the population being screened. Despite the inability of currently available screening algorithms to achieve the desired PPV there may be an advantage in producing a stage migration to lower stages at the time of diagnoses, thereby resulting in improved survival. Equally important recent studies have demonstrated that women who have their initial surgery performed by gynecologic oncologists, and women who have their surgeries at centers experienced in the treatment of ovarian cancer have higher survival rates. For these reasons it is essential that all women at high risk for ovarian cancer receive their initial care by gynecologic oncologists and at centers with multidisciplinary teams experienced in the optimal care of ovarian cancer patients. With this in mind, methods that facilitate the accurate triage of women who will ultimately be diagnosed with ovarian cancer could play a significant role in improving survival rates for these patients. This review article will examine the current state of biomarker use in ovarian cancer screening, risk assessment and for monitoring ovarian cancer patients.
Qualitative exploration of healthcare relationships following delayed diagnosis of ovarian cancer and subsequent participation in supportive-expressive group therapy
Conclusion. Overweight and obese patients did not have worse survival than normal weight and underweight patients. The prognostic impact of BMI on survival was only noted for underweight patients with serous tumors.
Soc Work Health Care. 2009 Aug-Sep;48(6):614-34. Treatment decision making and its discontents.
Sinding C, Wiernikowski J.
Department of Health, Aging, and Society, and School of Social Work, McMaster University, Hamilton, Ontario, Canada. sinding@mcmaster.ca
Patient participation in treatment decision making is held as a virtue in clinical contexts, and has much to recommend it. Yet important questions have been raised about the assumptions underlying models of patient participation. Debates have arisen about the significance of medically defined risks and outcomes of treatment; the adequacy and relevance across social groups of the concept of autonomy; and the emphasis on the professional-patient dyad. This article contributes to the debate about treatment decision making with reference to a study focused on older women with cancer. Interviews with patients and cancer care professionals highlighted the salience to patients' treatment choices of experiential knowledge, social roles and responsibilities, and the health policy context. It appears that prevailing models of decision making may obscure patients' more typical decision processes as well as the social determinants of those choices.
CONCLUSIONS:: ICF had acceptable readability and provided a realistic overview of the benefits and risks of clinical trials, but the potential for hospitalization or fatality was underreported.
Editor's Comment: I received this response and have forwarded the information on to my ovarian cancer friend. It was sent onwards (obviously). One small step and although only the friend herself will know if this will be helpful, it is one small step.
Sandi
Dear Ms. Pnaiuskas, can you forward to her the information that I sent you yesterday? She can also contact me directly.
With the focus of attention on H1N1 are we allowing care for those
desparately ill to go to the bottom of today's priority list? It would
seem so.
I have a friend in need. The cancer is killing both of us. The
cancer is killing my friend because of the disease. It is killing me
because I am sitting here watching and listening to this friend who
needs help but cannot access palliative care assistance. It seems that
this patient has tried to access help without success.
I believe there must be a healthcare provider somewhere in this province,
who can exercise some form of a miracle and connect the dots. Out of privacy
concerns I will not publicly provide this patient's personal information
but what I do need is someone in the Vancouver area who has the authority,
ability and willingness to help this patient.
As a cancer survivour and friend, the best I can do is place a call for action.
As a healthcare provider, you have the means to make it work. I will connect
you. Please help because we need to and we must.
Sandi Pniauskas
October 30, 2009
http://ovariancancerandus.blogspot.comhttp://ovariancancerdebate.blogspot.com/November 1st, 2009 update:This letter was circulated through
media outlets, Twitter, Facebook,
listservs, professional organizations etc. With the exception
of Charles Adler (media broadcaster)
and 2 cancer survivours it fell on deaf ears.
"Patients deemed to have a high risk of an underlying malignancy should be reviewed in consultation with a gynaecologic oncologist for assessment and optimal surgical management."
Abstract: the response rate to the survey was 45.6%
"CONCLUSIONS: Our survey had a significant response rate and was able to delineate current laparoscopic entry practice patterns of gynaecologists, which were consistent across Canada. Despite 72.9% of respondents reporting familiarity with the recent SOGC clinical practice guideline, it appears that clinical practice does not necessarily coincide with current recommendations. These variances in gynaecological practice emphasize the need for further educational initiatives to ensure that the evidence from research is used to make clinical practice safer."
