Wednesday, December 02, 2009
James Kreppner’s Obituary by the Toronto Star.
James Kreppner Death Notice
"KREPPNER, James Rudolf - March 6, 1962 to May 14, 2009 The world has lost an extraordinary human being. It is with profound sadness that the family announces the passing of James, a man possessed of a brilliant mind, gentle soul and tender heart, after a long, courageous and feisty battle with illness, on May 14, 2009, in his 47th year due to HIV and Hepatitis C-related complications...James was a highly respected, articulate and exemplary activist who represented the true meaning of fairness and kindness."
response to prior letter: HINI and Cancer
Note/background: Please reference prior blog postings Nov 1-5th, 2009 regarding the apparent lack of access to care of an ovarian cancer woman and the systemic issues surrounding the H1N1.
email response (better late than never) December 2, 2009 4:57 pm:
"Thank you for writing and bringing to my attention your concerns regarding the government’s handling of the H1N1 vaccine roll out. As you are aware, the vaccine is now available to all members of the public.
Your views and comments are appreciated and helpful to my work as Leader of Canada’s New Democrats.
Between the conflicting messages, queue jumping, and sole sourced contracts; we feel the federal government could have done a better job handling the distribution of the vaccine. NDP Health Critic Judy Wasylycia-Leis continues to be our lead on this issue and you can review her work by visiting: http://www.judywl.ndp.ca/news/health.
Looking forward, we will continue to press the federal government to take a proper role in helping Canadians stay healthy and providing access to treatment when needed through:
- promoting healthy living
- hiring and training more doctors and nurses
- creating a pan-Canadian home care program
- ensuring prescription medicines are affordable
If you are interested in our plans to improve health care in Canada, I encourage you to check for details here: http://www.ndp.ca/platform/healthcare.
Again, thank you for sharing your views and comments as they helpful to my work as Leader of Canada’s New Democrats. All the best.
Sincerely,
Jack Layton, MP (Toronto-Danforth)
Leader, Canada's New Democrats"
14-3-3σ, the double-edged sword of human cancers
highly technical paper, but the issues that always seem to find ovarian cancer at 'odds' with other cancers:
Despite the above findings that 14-3-3σ expression correlates with and may predict poor prognosis of breast, colorectal, prostate, and pancreatic cancers, opposite observations have also been made in other cancers including endometrium [61] and ovary [30], where it was found that the absence or low expression level of 14-3-3σ predicted poor survival or showed no correlation (see Table 1). In another study of 192 cases of ovarian cancer patients, no significant correlation between 14-3-3σ expression and survival was found [62]. Thus, it is possible that 14-3-3σ in prognosis prediction is cancer type dependent, and more detailed studies on this issue will be needed.
In response to recent media: Does Morphine Stimulate Cancer Growth? | GeriPal - A Geriatrics and Palliative Care Blog
Please read the full article/discussion. Many questions were asked and responses given which may be helpful for many.
Over the last week Reuters, ABC news, MSNBC, BBC News, and more than 75 other outlets reported on how two "two new studies add to growing evidence that morphine and other opiate-based painkillers may promote the growth and spread of cancer cells." What was most shocking were the headlines used to promote the stories:
* Morphine 'might spread cancer' (BBC News)
* Morphine May Help Tumors Spread in Cancer Patients (US News and World Reports)
* Pain drug morphine may accelerate cancer growth (Reuters, ABC News)
* Common Pain Relief Medication May Encourage Cancer Growth (Science Daily)
Tuesday, December 01, 2009
Cochrane Collaboration meta-analysis: Erythropoietin or Darbepoetin for patients with cancer - meta-analysis based on individual patient data
The authors of this new meta-analysis concluded that ESA treatment shortens survival. They could not identify with certainty any subgroup of patients at either increased or decreased risk of dying when taking ESAs. With their doctors' help, cancer patients should consider the risks of taking ESA against the risks of a blood transfusion. Be aware, however, that uncertainties remain about the magnitude of each.
favourite quote of the day
"... if you are really effective at what you do, 95% of the things said about you will be negative." Scott Boras
(incompetent) Ontario Health Ministry press release: Improving Patient Care in Ontario
email to Minister:
Please immediately hire a new writer. This has to be the worst press release I have ever read and has a new found meaning in 'dumbing it down'. Give the public a bit, just a bit of credit for health literacy. Also include in the future a direct link to the bill. Was this reviewed by a panel of patients/citizens before it was released? No need to answer as it is obvious.
Ontario
Improving Patient Care in Ontario
December 1, 2009 2:13 PM
Ontario has passed Third Reading of Bill 179 that would improve access to health care for Ontarians by allowing care providers to use all of their training to perform their jobs and to work more effectively in teams. The proposed legislation would:
Expand What Health Care Providers Do
Health profession Acts (e.g., Nursing Act) under the Regulated Health Professions Act would be changed to allow providers to perform specific health care actions (controlled acts) or order diagnostic tests:
Health Care Provider
Proposed New Controlled Acts and Powers
Nurse Practitioners
* Apply specified forms of energy (e.g., diagnostic ultrasound);
* Set or cast a fracture or dislocation of a joint
Pharmacists
* Prick or lance skin to educate a patient
Physiotherapists
* Tell patients their diagnosis
* Treat a wound
* Insert an instrument, hand or finger into certain body openings for assessment or rehabilitation of the pelvic musculature
* Order certain forms of energy (e.g., diagnostic ultrasound)
Midwives
* Tell patients their diagnosis
* Give suppository drugs
* Place a tube in the nose or mouth of a newborn
* Take blood samples from fathers and donors
Dietitians
* Prick skin to check a patient's blood readings
Medical Radiation Technologists
* On the order of a physician be able to:
- perform procedures below the skin (e.g., give a needle)
- suction a tracheotomy
- put contrast media into certain body openings and artificial openings into the body
- put an instrument, hand or finger past certain body openings and artificial openings into the body.
Professional Practice Changes Regarding Drugs
Health professions Acts (e.g., Pharmacy Act) under the Regulated Health Professions Act would be changed to give providers the power to administer, prescribe, dispense, compound (mix), sell and use drugs as follows:
Health Care Provider
Drug Authorities Proposed to be Added
Chiropodists and Podiatrists
Give a patient certain substances by inhalation
Dental hygienists
Prescribe, dispense, sell or mix certain drugs
Dentists
Sell or mix drugs (can already prescribe and dispense)
Midwives
Give a patient any substance on the order of a physician
Naturopaths
Prescribe, dispense, mix and sell certain drugs.
Nurse practitioners
Prescribe, dispense, mix and sell drugs without restrictions.
Pharmacists
Prescribe certain drugs to manage patient health
Give certain substances through injection and inhalation to demonstrate their use or to educate patients
Physiotherapists
Give certain substances by inhalation as ordered by authorized persons (e.g., a physician)
Respiratory therapists
Independently give a patient certain substances by inhalation
Increase Ability to Order X-Rays
Regulations would be changed under the Healing Arts Radiation Protection Act to allow:
* Nurse practitioners to order any X-rays
* Physiotherapists to order X-rays subject to conditions
CONTACTS
* David Jensen
Communications Branch
416-314-6197
media@nullmoh.gov.on.ca
* Ivan Langrish
Minister's Office
416-326-3986
* For public inquiries call ServiceOntario, INFOline
1-866-532-3161
null(Toll-free in Ontario only)
* Media Line
Toll-free: 1-888-414-4774
GTA: 416-314-6197
media@nullmoh.gov.on.ca
Ministry of Health and Long-Term Care
ontario.ca/health
© Queen's Printer for Ontario, 2008 - 2009 - Last Modified:December 01, 2009
Q & A transcript: Outlook: Fighting a smarter war on cancer - washingtonpost.com
"Outlook: Fighting a smarter war on cancer"
Cancers, infections, and endocrine diseases in women with endometriosis
"While ovarian cancer and melanoma were significantly more common than in the general population, breast cancer was surprisingly less common."
Video-assisted thoracic surgery (VATS) evaluation of pleural effusions in patients with newly diagnosed advanced ovarian carcinoma can influence....
Video-assisted thoracic surgery (VATS) evaluation of pleural effusions in patients with newly diagnosed advanced ovarian carcinoma can influence the primary management choice for these patients.
Monday, November 30, 2009
CureToday.com: Blogs - Kathy LaTour - Do you understand your diagnosis?
"'I literally wrote the book but it made no difference,'"
Just medicare: what's in, what's out ... - Google Books
This book is available free through Google books or can be purchased online.
Malignant Ascites Symptom Cluster in Patients Referred for Paracentesis
click on the pdf icon for full free access the paper
New Class of Platinum-Based Anti-Tumor Drugs, Bisplatinates, Demonstrates
New Class of Platinum-Based Anti-Tumor Drugs, Bisplatinates, Demonstrates Potent Anti-Tumor Activity and Ability to Overcome Resistance to Currently Available Platinum-Based Agents
Sunday, November 29, 2009
OCATS requires your help
Message forwarded: website http://www.ocats.ca
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.
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
Copy to: (this is really the job of the Regina Qu’Appelle Health District) Dr. Dwight Nelson, CEO RQHD dwight.nelson@rqhealth.ca, Dr. Chris Vuksic, Chris.Vuksic@rqhealth.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
Short, Sweet and To the Point is all you need:
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.
John L. Marshall -- How health-care reform can cure cancer - washingtonpost.com
"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."
CBC News - Health - Ontario expands access to costly cancer drug
CBC News - Health - Ontario expands access to costly cancer drug
Ontario is expanding access to a cancer drug that was the subject of a scathing report by the province's ombudsman earlier this year.....
news item: see - Top 10 most common primary site cancers diagnosed with more than 1 cancer
my view: according to ACS stats, but I full expect that these numbers are very low estimates
Saturday, November 28, 2009
Social Media Use in the United States: Implications for Health Communication | Chou | Journal of Medical Internet Research
Social Media Use in the United States: Implications for Health Communication | Chou | Journal of Medical Internet Research
(full free access is available by registering with the site)
Aggressive Treatment of Ovarian Cancer Not Supported By Science
Exactly!
"To get the science to back-up the practice is something that really needs to be done," concluded Ms. Symecko.
EvidenceUpdates: Phase III trial of observation versus six courses of paclitaxel in patients with advanced epithelial ovarian cancer in complete ....
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.
Chapter 22: Ovarian Cancer - Cancer Network
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
Friday, November 27, 2009
Counterpoint: No 'magic' involved in naturopathic medicine
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.
Read more: http://network.nationalpost.com/np/blogs/fullcomment/archive/2009/11/27/counterpoint-no-magic-involved-in-naturopathic-medicine.aspx#ixzz0Y6WTmvDE
Volunteers cut adrift by mental health charity - thestar.com
This is a wider issue although the article focuses on the mental health charities:
Volunteers cut adrift by mental health charity - thestar.com
Thursday, November 26, 2009
Wednesday, November 25, 2009
BRCA1 5272-1G>A and BRCA2 5374delTATG are founder mutations of high relevance for genetic counselling in breast/ovarian cancer families of Spanish ori
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
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 280 000 individuals. PJS predisposes sufferers to various malignancies (gastrointestinal, pancreatic, lung, breast, uterine, ovarian and testicular tumors).
Statement on the politicization of evidence-based clinical research
Statement on the politicization of evidence-based clinical research
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.
Canadians demand better health care service | Canada | News | Toronto Sun
Canadians demand better health care service | Canada | News | Toronto Sun:
"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."
Tuesday, November 24, 2009
This flu outbreak, health workers quicker to roll up their sleeves.
JAMA -- Hormone Therapy Use and Risk of Ovarian Cancer--Reply, November 25, 2009, Mørch and Lidegaard 302 (20): 2204
JAMA -- Hormone Therapy Use and Risk of Ovarian Cancer--Reply, November 25, 2009
JAMA -- Hormone Therapy Use and Risk of Ovarian Cancer, November 25, 2009, MacLennan and Baber 302 (20): 2203
JAMA -- Hormone Therapy Use and Risk of Ovarian Cancer, November 25, 2009
Creating a System for Performance Improvement in Cancer Care: Cancer Care Ontario’s Clinical Governance Framework
Creating a System for Performance Improvement in Cancer Care:
Cancer Care Ontario’s Clinical Governance Framework
news report Oct 2009: ASCO Breast: Hereditary Cancer Diagnosed Earlier
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.
Japanese study: full free access - Ovarian cancer in endometriosis: epidemiology, natural history, and clinical diagnosis 18-11-2009
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.
Monday, November 23, 2009
Ovarian cancer -- Easily Missed?-- BMJ
U.K.....This equates to about one new diagnosis for each full time general practitioner every five years
The role of cancer stem cells and the side population in epithelial ovarian cancer
click on 'pdf' for access to the free full access document
Federal PreBudget Consult: Planning for Investments in Support of the Seriously‐ill and Dying as a Public Policy Response to Sustaining Canadian ...
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
NIH Office of Rare Diseases Research (ORDR) - Scientific Conferences
December 10, 2009 - December 11, 2009
NIH Office of Rare Diseases Research (ORDR) - Scientific Conferences
AHRQ National Resource Center:Report on Engaging Consumers in Health
Report on Engaging Consumers in Health IT Development
NIH - Ovarian Cancer (numerous sections)
NIH - Ovarian Cancer
NCI
National Cancer Institute
* Angiogenesis Inhibitors in the Treatment of Cancer
* Cancer.gov Dictionary
* Etapa del cáncer: preguntas y respuestas Spanish
* Extracranial Germ Cell Tumor (Childhood)
* Genetics of Breast and Ovarian Cancer (PDQ)
* Increased Risk of Ovarian Cancer is Linked to Estrogen Replacement Therapy
* NCI Designated Cancer Centers
* Oral Contraceptives and Cancer Risk
* Ovarian Cancer
* Ovarian Cancer: U.S. Racial/Ethnic Cancer Patterns
* PDQ-Prevention-Patients: Ovarian Cancer
* PDQ-Screening-Patients: Ovarian Cancer
* PDQ-Tratamiento-Pacientes: Cáncer Epitelial de los Ovarios Spanish
* PDQ-Tratamiento-Pacientes: Tumor de células germinales del ovario Spanish
* PDQ-Tratamiento-Pacientes: Tumores del Ovario de Bajo Potencial Maligno Spanish
* PDQ-Treatment-Patients: Ovarian Epithelial Cancer
* PDQ-Treatment-Patients: Ovarian Germ Cell Tumor
* PDQ-Treatment-Patients: Ovarian Low Malignant Potential Tumor
* Preguntas y respuestas acerca del cáncer metastásico Spanish
* Questions and Answers about Metastatic Cancer
* Questions and Answers: OvaCheck and NCI/FDA Ovarian Cancer Clinical Trials Using Proteomics Technology
* SEER Cancer Statistics Review 1973-1999: Ovary Cancer (Invasive) PDF
* Tumor de células germinales del ovario (PDQ®): Tratamiento Spanish
* Tumor Grade
* What You Need To Know About Ovarian Cancer
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
Health News Review: Objective Ratings of Health and Medical Journalism
"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......"
Sunday, November 22, 2009
On Caring For 'Difficult' Patients -- Miksanek 27 (5): 1422 -- Health Affairs
On Caring For 'Difficult' Patients -- Miksanek 27 (5): 1422 -- Health Affairs
"To continue being blunt, it’s all about how doctors and patients relate to one another. And the problem with a difficult patient isn’t just the patient. It’s also the doctor. Difficult patients and their frustrated physicians fail each other. We flop together. We lose hope. And there is no more worthless doctor than one who has lost all hope. Same holds true for a patient."
Ovarian Cancer Update: Lessons From Morphology, Molecules, and Mice
Ovarian Cancer Update: Lessons From Morphology, Molecules, and Mice
However, it is somewhat disconcerting that this information is largely ignored by our clinical colleagues when treating the patient.
Saturday, November 21, 2009
Get a Mammogram. No Don’t. Repeat. - NYTimes.com
Get a Mammogram. No Don’t. Repeat. - NYTimes.com
So the arguments continue to rage over risks and benefits, and over how strongly to recommend mammograms, and for whom, just as they have for decades:
RARECARE - Surveillance of Rare Cancers in Europe
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.
National Institutes of Health make it easier to find a clinical trial. | R.A. Bloch Cancer Foundation
"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."
Steve Dunn's CancerGuide: Second Opinions: Why, When, and Who
Steve Dunn is no longer with us, but his words live on.
Alcohol and gynecological cancers: an overview
In conclusion, the current body of evidence, which is inadequate for several sites, suggests no association between alcohol consumption and risk of gynecological cancers.
Thursday, November 19, 2009
REPOST: Submission to the Health Care Commission of Canada© (Romanow Commission)
Submission to the Health Care Commission of Canada
Ovarian Cancer RN, M.Sc., CON(C)
Patient and Advocate Acute Care Nurse Practitioner
Oncology
Introduction
Thank you for allowing me this opportunity to present my views regarding the ongoing debates concerning our Health Care system in Canada
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.
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
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
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
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 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
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
L1N 6Z8
(1) NCI Canadian Cancer Statistics 2002 Current Incidence and Mortality Estimated New Cases and Deaths for Cancer Sites by Gender , Canada
(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 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
(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
(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
(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
(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 Albrecht Pfleiderer , Professor Emeritus Freiburg , Germany
*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
Does cancer screening do harm? - The Globe and Mail
Does cancer screening do harm? - The Globe and Mail
My response:
11/19/2009 5:55:51 AM
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.
Wednesday, November 18, 2009
Phase II Study of Carboplatin, Paclitaxel, and Bevacizumab With Maintenance Bevacizumab As First-Line Chemotherapy for Advanced Mullerian Tumors.
Phase II Study of Carboplatin, Paclitaxel, and Bev... [J Clin Oncol. 2009] - PubMed result
CONCLUSION: The regimen of carboplatin, paclitaxel, and bevacizumab with maintenance bevacizumab is feasible, safe, and worthy of future study in advanced ovarian cancer.
Polymorphic Variation of Genes in the Fibrinolytic System and the Risk of Ovarian Cancer
Polymorphic Variation of Genes in the Fibrinolytic System and the Risk of 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.
Postal survey of physicians and laboratories: Practices and perceptions of molecular oncology testing
Postal survey of physicians and laboratories: Practices and perceptions of molecular oncology testing
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.
ACS :: Cancer Prevention Study-3
ACS :: Cancer Prevention Study-3
"...inviting men and women between the ages of 30 and 65 years who have no personal history of cancer..."
Tuesday, November 17, 2009
Data From Studies of Pfizer Neurontin Drug May Have Been Skewed - Bloomberg.com
Data From Studies of Pfizer Neurontin Drug May Have Been Skewed - Bloomberg.com
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.
Early detection key in ovarian cancer » Abilene Reporter News
“I want women to quit dying and coming in too late,”...
Welcome to ResearchMatch
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.
IPCRC.NET: International Palliative Care Resource Center
IPCRC.NET: International Palliative Care Resource Center
Including World Heath Organization info:
WHO Strategy
Policy and Advocacy; Drug Availability; Education
Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?
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.
Cochrane Collaboration review: Interval debulking surgery for advanced epithelial ovarian cancer
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.
Monday, November 16, 2009
Video Library - cbs new recommendations for mammograms at 50 years vs 40yrs
plus discusses self-exams
Sunday, November 15, 2009
2008 Special Ovarian Cancer Women at OneTrueMedia.com
This is the largest and first Montage in the series of Ovarian Cancer Montages - 2008, 2008 Annamarie & 2009 Yi
Saturday, November 14, 2009
2009 Yi & St Louis Ovarian Cancer Montage at OneTrueMedia.com
Updated photos including Montage of 2008 Special Ovarian Cancer Womens' Montage
partial view: Response - Response to Robert G. Resta Commentary (Unprepared, Understaffed, and Unplanned: Thoughts on the Practical Implications of Di
Response to Robert G. Resta Commentary (Unprepared, Understaffed, and Unplanned: Thoughts on the Practical Implications of Discovering New Breast and Ovarian Cancer Causing Genes
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