Monday, November 23, 2009
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
Tuesday, November 10, 2009
Monday, November 09, 2009
Current state of biomarker development for clinical application in epithelial ovarian cancer.
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-expressiv
Qualitative exploration of healthcare relationships following delayed diagnosis of ovarian cancer and subsequent participation in supportive-expressive group therapy
CancerView.ca - search results - NIL
Canadian Partnership Against Cancer and affiliate:
Search Results:
SAGE
Target Population -
Age: Adult
Continuum Of Care: Treatment
Type of Cancer: Gynecology
No results found to display
Body mass index as a prognostic factor in epithelial ovarian cancer and correlation with clinico-pathological factors
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.
QUOTE chemo: A patient-centred instrument to measure quality of communication preceding chemotherapy treatment through the patient’s eyes
QUOTE: Odd how the p in patients' is in small caps ??
Sunday, November 08, 2009
Saturday, November 07, 2009
Friday, November 06, 2009
Treatment decision making and its discontents
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.
The Contents and Readability of Informed Consent Forms for Oncology Clinical Trials
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.
Thursday, November 05, 2009
Update: H1N1 and Cancer
A miracle. Our ovarian cancer friend is now in the hospital and receiving the care that she feels she needs and which she deserves. A good news story!
Wednesday, November 04, 2009
Update - from Nov 3rd - Letter to the Editor H1N1 and Cancer (ovarian cancer woman in need)
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.
Thanks,
BC Cancer Agency WebQueries
604-675-8005 604-675-8009
1-888-675-8000, local 8005
* 675 West 10th AvenueVancouver, BC V5Z 1L3
Tuesday, November 03, 2009
Sunday, November 01, 2009
H1N1 and Cancer - update
Letter to the Editor;
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.com http://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.
Initial evaluation and referral guidelines for management of pelvic/ovarian masses - Canada
"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."
Who are the providers of gynaecologic cancer surgical care in Ontario?
Laparoscopic peritoneal entry preferences among Canadian gynaecologists
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."
Saturday, October 31, 2009
patient advocacy
Today, as I ponder spending the past 48 hrs trying to help this friend, I am disgusted with the lack of response. How can this be? (see letter below)
H1N1 and Cancer
Letter to the Editor;
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 can and we must.
Sandi Pniauskas
sandipn@sympatico.ca
October 30, 2009
Hope with More: In Their Own (Ovarian Cancer) Words
reposted from September 11th:
Hope with More: ‘In Their Own (Ovarian Cancer) Words’©
September 11th, 2009
Author: Sandi Pniauskas
Still today, less than 20% of ovarian cancers are diagnosed in early stages, primarily one of luck or happenstance. Ever-present are the realities that ovarian cancer is a disease most often en-shrined in significant suffering. This is our past and this is our current reality.
Reflecting on our women’s most intimate and unpublished thoughts, feelings and opinions tells, ‘In Their Own (Ovarian Cancer) Words’, what still has not and is not being heard. This is not the ‘cute’ side of ovarian cancer, although there are moments. Each day brings a kaleidoscope of emotions. With each passing day, the struggles of the fine line between Hope, Reality, Wishes, Expectations and Dreams remain.
We speak as one without boundaries and indeed in many respects ovarian cancer IS the silent killer. Against our will and with significant sacrifices, this ovarian cancer invariably defeats the body and the spirit. I challenge you to listen, as we have, so silently, for so long. A decade of intimate involvement with ovarian cancer women, their caregivers and communities, has most often elicited truisms that stand out. There is Trust between Survivors & Caregivers and secondly, there does not exist, in our world, an ‘ordinary’ ovarian cancer woman.
Trust between ovarian cancer Women and Caregivers is: Hope with More.
Should we choose we might learn much based on these personal conversations. These few words represent a microscopic-sampling of millions of words and thoughts - all valued - all cherished – sometimes dismissed. Sometimes too difficult to b/hear. Sometimes with a huge sigh of relief and humour.
In our communities, many moments are spent living-with-ovarian cancer, often through the eyes of others. As a tribute to our ovarian cancer women, living-with or in-spirit, these are their words to you with that special privilege of Trust and my own personal admiration… in their own words. Some are stunning. All are real.
Age:
A: Ovarian cancer for xx-something ‘dummies’.
L: Older than whom?
I: How dare they write me off.
S: I have wished it was me, not her going thru this . Though I am younger and could be stronger, the truth is I am such a coward compared to her.
Angels & Hope & Friends:
B: I am alive today because of my guardian angel {an ovarian cancer survivor).
B: Spent all day in emergency because I was having a lot of trouble breathing. Good news no heart
attack, no stroke.
R: Please visit me today as I think this is it…. Please visit me today as I think this is it….(X many) … Look after yourself and when you have time, contact me at: 1 – 800 – HEAVEN ext R … Message to R: The line has been kind of busy ....
Y: Friendship therapy is something that has not been explored by the medical community, but it is important for cancer survivors. When I was on chemotherapy, I might just sleep over some days because during those days I was too sick to eat or get up. I was surprised I was enjoying not only the good companies, but also the food when other survivors came to visit me.
L: …will be shutting down the computer now...we’ll see each other completely on the other side.
C: I agree, let’s go, we can. (do this)
C: I think I will lean heavily on philosophy as I get closer to dying. It's that or religion. There's always food! Maybe I'll just eat my way through the fear of death!
S: I have to say that I am not being very gracious here and at the same time not feeling that I should
apologize either. It makes me feel that I am supposed to be wishing you the best when all I really am
wishing for is that you could stay.
CA125:
S: I was 3x years old when I was diagnosed…. I have never had a CA 125 done to my knowledge.
S: It doesn’t matter what the research on the CA125 says - it’s all we have.
Humor:
J: (Dr.) said if his wife was going for (treatment) this is who he would send her to. I hope he likes his wife!!!!
S: I should have read the bio first - psychiatry and 'suck it up' don't really go together.
S: Thanks for living so long! (woman with 150~ + chemo/multiple surgeries TO woman with no recurrence)
L: This disease may have taken my ovaries but has replaced them with a ‘set of balls’.
Husbands/Partners:
D: I watched, as the verdict was read, a tsunami-like wave pass right over my wife’s head, leaving her completely stunned.
Knowledge:
A: Ovarian cancer for xx-something ‘dummies’. (worth repeating)
S: In order to be taken seriously, we (patients) need to understand everything about ovarian cancer.
C: I decided that starvation is the easier death by far….
B: I once read that ovarian is the most complicated cancer, so I figure that I (and the rest of us) must be really special.
Impact:
B: “You need a surgeon and you need one now”. I left his office naively thinking that something would be done and that we could go back to trying to have children.
L: (upon my death) please thank everyone in our group...they are so special.
R: (favourite quote) "Since my house burned down I now have a better view of the rising moon."
F: I always wonder which (ovarian cancer friend’s) death will put me over the edge. I think I am close.
Value and Sense of Worthiness:
K: I feel I am nothing for what this disease is doing to my family (control)….I am not a nothing...I am really a somebody...somebody with ovarian cancer.
L: Let me tell you what is on my mind without cutting me off with "You are so negative!” It is not that I am being negative, these are the facts and I am being realistic.
D: (word games) I Am No Thing. I Am. Not a Thing, or a title, nor am I a summary of accomplishments. I am No Thing because I am not static, not uniform, not in a box, not a disease, not a political party. I am not a snapshot.
C: (published) “Devaluing a Survivor’s Challenge”
We are: PhD’s, healthcare support professionals, lawyers, bankers, physicians, teachers, social workers, computer specialists, nurses, realtors, bankers, e-patients...…Daughters, Sisters, Mothers, Grandmothers
*As matters of integrity, names have not been disclosed, albeit many have given their express permission to do so (past and present)
Friday, October 30, 2009
$5.4 million Quebec breast cancer wait list class action settlement approved by court Patients who experienced post-surgery radiotherapy treatment...
$5.4 million Quebec breast cancer wait list class action settlement approved by court
Patients who experienced post-surgery radiotherapy treatment delays must file claims by March 31, 2010
2007 British Columbia PET scans approved for gyn cancers
vs zero for Ontario
reference document for B.C. criteria
Correspondence: Molecular Screening for Lynch Syndrome: From Bench to Bedside
Lynch syndrome is the most prevalent familial cancer. Screening
can prevent death from new colon and endometrial cancers among
the patients and family members. We urge the implementation of a
molecular screening for all colorectal cancer patients and suggest
taking advantage of BRAF and methylation analyses in MLH1-
negative cases to select the patients at highest risk.
To find a global solution to cancer, we need a global conversation - The Globe and Mail
To find a global solution to cancer, we need a global conversation - The Globe and Mail:
"The patient rarely, if ever, has a meaningful role in their care or any real power in the health system.
The public and patients rarely have a voice."
Thursday, October 29, 2009
Ontario Ministry of Health Rejecting OSCAR is a $1 Billion Mistake.
"The province has rejected McMaster University's offer to get every family doctor using electronic health records within two years.
McMaster said it would need less than $20 million to get the 8,000 family doctors still using paper files in Ontario switched to an electronic health records system created by the university and called OSCAR.
But the Ministry of Health says it's sticking to its policy of letting individual doctors decide whether they want electronic health records and what system to use.
Theoretical model of treatment strategies for clear cell carcinoma of the ovary: Focus on perspectives
" ..the therapy currently used in renal CCC should be considered as an alternative for the present treatments or an attractive therapeutic option for ovarian CCC."
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Conference Overview - The Empowered Patient Conference, Vancouver Island Conference Center - Including the Patient in Patient Safety
The Empowered Patient Conference
Saturday, November 7th, 2009
9:00am – 4:30pm (registration begins at 8:00am)
Vancouver Island Conference Centre, Nanaimo BC
101 Gordon Street, Nanaimo, B.C.
Would you like to play a meaningful role in your health care decisions?
Would you like to develop the knowledge and power to advocate for yourself within the health care system?
The Empowered Patient Conference is a one day event where you will develop the skills and confidence to advocate for yourself. You will hear from a range of people who are helping patients to improve safety. And you will leave empowered – knowing what to say and what to do to get the health care you deserve.
Who Should Attend?
This event was initiated by patients for patients and caregivers, including members of the public and business community, consumers of conventional and alternative health care, health care advocates, anyone living with chronic health conditions, and anyone interested in making empowered health care a reality.
Monday, October 26, 2009
U.S. NIH Research Portfolio Online Reporting Tool (RePORT) - Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
Note: scroll down the page for ovarian cancer
Ovarian epithelial tumors of low malignant potential: a case series of 5 adolescent patients
Ovarian epithelial tumors of low malignant potential: a case series of 5 adolescent patients
Anjali AggarwalacCorresponding Author Informationemail address, Kerith L. Luccoac, Judith Lacyac, Sari Kivesac, J. Ted Gerstlebc, Lisa Allenac
Received 7 April 2009; received in revised form 19 June 2009; accepted 23 June 2009.
Abstract
Epithelial ovarian neoplasms are uncommon in pediatric and adolescent patients, accounting for approximately 20% to 30% of ovarian tumors in adolescent females and women younger than 25. Tumors of low malignant potential (LMP) account for a significant proportion of epithelial neoplasms in this patient population. This case series describes 5 adolescent patients, with a mean age of 14.4 ± 2.4 years, diagnosed with ovarian tumors of LMP at one institution.
Between November 2001 and January 2006, 5 patients were diagnosed with ovarian tumors of LMP of 126 patients who had surgery for adnexal masses. All patients underwent initial surgery via laparotomy. Two patients underwent ovarian cystectomy, and 3 had at least a unilateral salpingo-oophorectomy. One patient had stage IIIc disease, whereas the other 4 patients, not all completely staged, had presumed stage I disease. Three patients developed recurrent ovarian masses on follow-up. Two had recurrent LMP tumors (one bilateral) and one was a benign mucinous cystadenoma.
This case series of 5 adolescent patients with ovarian tumors of LMP highlights the importance of considering epithelial neoplasms in any pediatric or adolescent patient with a pelvic mass and supports conservative management, with staging and fertility-sparing surgery; however, appropriate follow-up is essential, as evidenced by 3 of 5 patients exhibiting recurrent ovarian masses.
Sunday, October 25, 2009
Saturday, October 24, 2009
Friday, October 23, 2009
Thursday, October 22, 2009
Elevated Cancer Mortality in the Relatives of Patients with Pancreatic Cancer
Note: Pancreatic cancer is also implicated in the BRCA 2/Lynch Syndrome genetic syndromes
Wednesday, October 21, 2009
Abraxane for the treatment of gynecologic cancer patients with severe hypersensitivity reactions to paclitaxel.
note: in 2 ovarian cancer patients (study)
Forgotten node: A case report. [World J Gastroenterol. 2009] - PubMed Result
1: World J Gastroenterol. 2009 Oct 21;15(39):4974-5.
Forgotten node: A case report.
Fratellone PM, Holowecki MA.
Fratellone Medical Associates, 47 West 57th Street 5th Floor New York, NY 10019, United States. fratmd@aol.com.
Sister Mary Joseph nodule or node refers to a palpable nodule bulging into the umbilicus and is usually a result of a malignant cancer in the pelvis or abdomen. Traditionally it has been considered a sign of ominous prognosis. Gastrointestinal malignancies, most commonly gastric, colon and pancreatic cancer account for about 52% of the underlying sources. Gynecological cancers, most commonly ovarian and uterine cancers account for about 28% of the sources.
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