Sunday, May 31, 2009
my response regarding Andy Pollack's patient views on the CA125 (prior to the science paper)
May 31st, 2009 submitted electronically:
The issue of ultimate survival benefit and the psychological impact of living with and dying with ovarian cancer are at odds with each other.
Ovarian cancer patients/caregivers, for the most part, understand the limitations of this only and less than effective monitoring/diagnostic tool. However, it is well established that the CA125 can forecast recurrent disease months in advance of current imaging tests (CT scans etc).
It is the psychological burden which is a mixed 'blessing' BUT it is the one thing which ovarian cancer patients hold onto because that is all that we have in the daily nanoseconds while dealing with ovarian cancer. It can be said and felt that some healthcare professionals are unable or unwilling to deal with the psychological impact of the CA125 due primarily from a time perspective (workload stresses).
In fact, until we have a better test for ovarian cancer, whether it is for screening high risk women or disease recurrence, this issue will never go away, irrespective of the science involved.
I believe that we need to say no to any further research regarding the CA125 because at this point we are simply regurgitating what is already know. It is important to move forward in the research and find sooner, rather than later, a test which will be more accurate for ovarian cancer. Illusive, but possible, if the coordinated and cooperative venues can be improved.
On a personal perspective, this will be my 10th year anniversary of disease-free/no recurrence clear cell ovarian cancer. This week I asked my family doctor (an exceptional physician) for a CA125 and even she raised her eyebrows at the request, but graciously proceeded with the requisition.
I consider myself well versed in the science of the CA125, but you see? It doesn't matter, the issue is personal, very personal.It is one of the burdens of the disease, assuming one survives ovarian cancer. Acknowledging the impact of the personal will relieve many science questions and management decisions.
Sandi Pniauskas
Letter of thanks for participation from NY Times journalist Andy Pollack - re: CA125 patient opinions
Sandi,
I have been overwhelmed with calls and emails from women offering thoughtful comments and telling of their own experiences. I used a couple in my article.
There are so many I might not be able to get back to everyone. So I was hoping you could send out a message, perhaps this message, thanking all of those women who so generously responded. The article should be on our website, http://www.nytimes.com, by Monday morning, probably Sunday night. There might be a way for readers to comment on the issue on our website.
Again, thanks for your help and to all the women who responded. I hope everyone does well in fighting this disease.
Best regards,
Andy Pollack
Biotechnology reporter
The New York Times
URGENT RESPONSE REQUIRED TODAY - CA125 Patients'/Caregivers' Views
Correspondence received today (May 31st, 2009:
Dear Sandi,
I cover biotechnology for the New York Times. I’m covering a study being presented at ASCO today showing that using CA-125 to check for recurrence and then treating when CA-125 starts to rise does not provide any survival benefit over just waiting for symptoms and starting treatment then. The lead investigator said there would thus be no need for women to constantly have their CA-125 tested, saying it only leads to anxiety and increased chemo without any benefit. He seemed to suggest that women, particularly in the US, have almost a “CA-125 psychosis’’ obsessing over their test scores. (This study does not refer to using CA125 to monitor therapy, only to detect recurrence.
I’m wondering if you or someone such as a woman with ovarian cancer would be willing to comment on this. Even if they don’t know the study results in detail I’m interested in the phenomenon, if it’s true, of constantly testing for CA-125.
The deadline is today so I would have to speak to people by about 5 p.m. eastern time today. My number is below so you or anyone can call me directly. Or reply by email.
Thanks for any help you can provide.
Best regards,
Andrew Pollack
Biotechnology reporter
The New York Times
917-679-5920
pollack@nytimes.com
Saturday, May 30, 2009
Informing women about HRT: the Consensus conference statement
Conclusions
This CC led to the identification of specific information drawbacks. Women are
exposed to messages that are often partial, non evidence-based nor transparently
developed. The structured and participative methodology of this CC allowed a
multidisciplinary perspective and a substantial lay people input.
Friday, May 29, 2009
Canadian Health Reference Guide: 23rd out of 32 countries: How Canada compares to Europe on health care
Dr. Björnberg pointed out that "Patients rights, access to information, and choice and services without delay are underdeveloped in Canada and deliver low value for the money spent."
Thursday, May 28, 2009
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Survey of unaffected BRCA and mismatch repair (MMR) mutation positive individuals
"Results suggest fear of GD is prevalent, yet data do not support evidence that GD exists."
Southwest Oncology Group Trial S9912: Intraperitoneal cisplating and paclitaxel plus IV paclitaxel and PLD as priary chemo of small volume residual OC
"CONCLUSION: Both the overall trial outcome, and specifically the excessively severe systemic toxicity of this regimen would prevent its future development in this exact form."
Monday, May 25, 2009
Sunday, May 24, 2009
Saturday, May 23, 2009
Hope dies last
Hope dies last: "But Canadians with rare cancers aren't in as strong a position as those with common cancers, in part because they 'don't have a strong lobby group"
Thursday, May 21, 2009
Wednesday, May 20, 2009
Tuesday, May 19, 2009
Letter to Saskatchewan Minister of Health: Ovarian Cancer Awareness & Treatment in Saskatchewan
May 19, 2009
Honorable Don McMorris
Minister of Health
Government of Saskatchewan
Room 302, Legislative Building
2405 Legislative Drive
Regina, SK
S4S 0B3
Dear Minister McMorris:
It has been an interesting time since we first wrote to you November 2008, and since we provided our
recommendations for gynecological oncology care for the women of Saskatchewan earlier in the spring of 2008.
We have learned so much more about how the medical profession operates, how medical care is delivered in
Saskatchewan, about guidelines, standards and recommendations by governing bodies and other jurisdictions.
And thank you to the good help of Sophie Ferre of your office, we have initiated relationships with some of the core executives responsible for decision making regarding gynecological oncology in our province. And we will continue to do this of course.
Also since our beginning with your office our group has more than doubled and support for our work is coming from many different directions, and we are able to provide support for more patients and their families.
This is all very positive and provides us with hope and motivation to continue.
Also hopeful is the fact not one single person, professional, executive, representative we have met with is against our recommendations. In fact, quite the reverse is true. We have been told that our recommendations are essential to improved survival outcomes for a very lethal cancer, that our recommendations are credible, that other groups concerned about gynecologic cancers has similar recommendations.
While other jurisdictions in Canada may not have written recommendations such as ours, all jurisdictions in Canada except Saskatchewan provide the care we are looking for from gynecologic
oncology units including intraperitoneal chemotherapy (IP).
The reasons for not doing this yet vary and have included the gaps between bureaucracies prevent it in various ways (jurisdictions, funding), the government needs to agree to funding, awareness needs to be improved.
We fully expected that on May 14th the meeting between the Saskatchewan gynecologic oncologists and the various bureaucracies would lead to some positive announcements for the women in our province.
Rather, we hear that there has been an agreement to continue to discuss Gynecologic Oncology units only until June 30th. No agreement ensuring we would not be losing our two specialists in Regina. No announcement about working groups that involve patient input.
We understand that the Regina gynecologic oncologists have not changed their plans to close their office September 1st. And we want to know what is happening with new patients.
Throughout, we have been very patient but now we feel it is urgent that we meet with you, as we requested back in November.
Please, Minister McMorris, it is time for us to present our case to you and find out what the barriers are to keeping our specialists in Saskatchewan.
Thank you for your consideration. We feel this is an urgent matter and would appreciate hearing back from
you very soon.
Sincerely,
Darlene Gray
A Director Of
Ovarian Cancer Awareness & Treatment in Saskatchewan
OCATS
6438 – 7th Avenue N, Regina, SK, S4T 6X7, Ph 306-775-1848, Fx 306-775-1853, darlenegray@sasktel.net Facebook
Editorial: Prognostic Tools for Cancer Survival: A Secondary Role for Quality-of-Life Measurement
"...But let us not regress back to our old ways and attach
significance to HRQOL only in relation to our attachment to survival
as a clinical outcome. Measuring HRQOL should have value in its own
right. As the field evolves, it should acquire greater clinical importance
and expand the lessons we take away from clinical trials."
Monday, May 18, 2009
Ovarian Pathology in Risk-reducing Salpingo-oophorectomies From Women With BRCA Mutations, Emphasizing the Differential Diagnosis of Occult Primary an
Ovarian Pathology in Risk-reducing Salpingo-oophorectomies From Women With BRCA Mutations, Emphasizing the Differential Diagnosis of Occult Primary and Metastatic Carcinoma.
Sunday, May 17, 2009
Special Feature: Swing and Miss?!? Efforts in Front-line Ovarian Cancer Chemotherapy Development.
A closer look at the components of these positively sloped survival curves demonstrates that most of the benefit afforded women is in life gained in the presence of disease, rather than cure. Indeed, the cure rates from ovarian cancer have remained relatively flat over these 3 decades, adding no more than approximately 2 weeks per year in the overall gain of life expectancy. This is clearly due to the unmovable percentage of advanced stage cases still indicative of the most common clinical presentation (stage III/IV), and underscores the immense impact even a slight stage migration could have on the overall clinical performance of women with this disease.
The temporal stability of the Symptom Index among ...[Gynecol Oncol. 2009] - PubMed Result
- Gynecol Oncol. 2009 May 6
-
The temporal stability of the Symptom Index among women at high-risk for ovarian cancer.
Molecular Diagnostics Program, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA; Exponent Health Sciences, Seattle, Washington, USA.
OBJECTIVE: To evaluate the temporal stability of self-reported symptoms known to be associated with ovarian cancer.
METHODS: This report is a longitudinal analysis of symptom reporting from 123 women who participated in the Seattle-based Ovarian Cancer Early Detection Study (OCEDS). The OCEDS population includes women at increased risk of ovarian cancer based on a family history of cancer or a BRCA I/II mutation. Data on symptoms were collected at two time points using a Symptoms Index that included abdominal pain, pelvic pain, feeling full quickly, inability to eat normally, abdominal bloating, and increased abdominal size.
RESULTS: There was a median of 101 days between the two time points, with a range of 72-332 days. The median age of the women was 51, with a range of 32-79 years. Abdominal bloating was the most commonly reported symptom at both time points. The symptom least commonly reported at the two time points was inability to eat normally. The Symptoms Index was negative at both time points for 86% of all women and positive at both time points for 2% of all women. There were no statistically significant patterns of change for symptom reporting between time points.
CONCLUSIONS: The Symptoms Index and women's report of abdominal pain, pelvic pain, feeling full quickly, unable to eat normally, abdominal bloating, increased abdominal size were stable between two time points in this sample. These findings provide evidence that longitudinal measurements of symptoms reporting by women in a screening study are likely to be reliable.
Ovarian Pathology in Risk-reducing Salpingo-oophorectomies From Women With BRCA Mutations, Emphasizing the Differential Diagnosis of Occult Primary an
Ovarian Pathology in Risk-reducing Salpingo-oophorectomies From Women With BRCA Mutations, Emphasizing the Differential Diagnosis of Occult Primary and Metastatic Carcinoma
Friday, May 15, 2009
Thursday, May 14, 2009
Wednesday, May 13, 2009
The temporal stability of the Symptom Index among women at high-risk for ovarian cancer.
Molecular Diagnostics Program, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA; Exponent Health Sciences, Seattle, Washington, USA.
|  | |||||||
| ||||||||
| ||||||||
| ||||||||
| OBJECTIVE: To evaluate the temporal stability of self-reported symptoms known to be associated with ovarian cancer. METHODS: This report is a longitudinal analysis of symptom reporting from 123 women who participated in the Seattle-based Ovarian Cancer Early Detection Study (OCEDS). The OCEDS population includes women at increased risk of ovarian cancer based on a family history of cancer or a BRCA I/II mutation. Data on symptoms were collected at two time points using a Symptoms Index that included abdominal pain, pelvic pain, feeling full quickly, inability to eat normally, abdominal bloating, and increased abdominal size. RESULTS: There was a median of 101 days between the two time points, with a range of 72-332 days. The median age of the women was 51, with a range of 32-79 years. Abdominal bloating was the most commonly reported symptom at both time points. The symptom least commonly reported at the two time points was inability to eat normally. The Symptoms Index was negative at both time points for 86% of all women and positive at both time points for 2% of all women. There were no statistically significant patterns of change for symptom reporting between time points. CONCLUSIONS: The Symptoms Index and women's report of abdominal pain, pelvic pain, feeling full quickly, unable to eat normally, abdominal bloating, increased abdominal size were stable between two time points in this sample. These findings provide evidence that longitudinal measurements of symptoms reporting by women in a screening study are likely to be reliable. PMID: 19427026 | ||||||||
Tuesday, May 12, 2009
Monday, May 11, 2009
IAPO Member, the Lance Armstrong Foundation, invites you to join the LIVESTRONG Global Cancer Campaign | A global voice for patients includes pts
IAPO | IAPO Member, the Lance Armstrong Foundation, invites you to join the LIVESTRONG Global Cancer Campaign | A global voice for patients:
"Organizations and individuals making extraordinary commitments will be invited to share the stage with world leaders in a high profile display of unity against cancer."
Sunday, May 10, 2009
Saturday, May 09, 2009
Friday, May 08, 2009
Thursday, May 07, 2009
Wednesday, May 06, 2009
Cochrane Collaboration review/commentaries: Interventions for psychosexual dysfunction in women treated for gyn malignancy
| Comments from Clinical Raters |
|---|
GynecologyA very useful review that confirms the need for proper randomised studies to answer this important question. My misgivings on the apparent lumping of all gynaecological malignancies together is that it creates an obviously flawed impression that sexual problems after treatment of gynaecological cancer of any kind might have a common solution. |
Oncology - GeneralI was surprised to find that there was any evidence at all from randomised studies that addressed questions in this important area. The authors rightly draw attention to the paucity of evidence and its poor quality. As interest increases in what is now called cancer survivorship, we can anticipate an increasing need for solid evidence on which to base management for the complex difficulties experienced by patients successfully treated for cancer. This paper indicates that it is not going to be easy to assemble the necessary evidence. |
Screening Tests Missing Early Signs of Ovarian Cancer - Oncology Nursing News
Screening Tests Missing Early Signs of Ovarian Cancer - Oncology Nursing News
Comment:
S. Pniauskas
Please also, and importantly, reference the recently published early detection ovarian cancer clinical trial by Dr Jacobs from the U.K.. Further, Dr Jacobs completed a study of 22,000 women over a decade ago with the same results. So, nothing has changed even after all of this time which is very sad. So much time has elapsed, so many deaths and sufferings. A coordinated international effort is needed badly and while new research is hopeful, our ovarian cancer communities have faced extreme dissapointments with even new and 'apparent' early detection tests of recent years. It would be seriously disconcerting to know that another decade may lapse without any definitive results. This does not take away from the goodwill and integrity of the research/ers, but a more effective and coordinated effort is needed.
Tuesday, May 05, 2009
Monday, May 04, 2009
Sunday, May 03, 2009
Saturday, May 02, 2009
Peutz-Jeghers Syndrome: eMedicine Gastroenterology updated Apr 2009
Peutz-Jeghers Syndrome: eMedicine Gastroenterology: "Almost 50% of patients with Peutz-Jeghers syndrome (PJS) develop and die from cancer by age 57 years. The mean age at first diagnosis of cancer is 42.9 years, /– 10.2 years.
* The cumulative risk for developing any cancers associated with Peutz-Jeghers syndrome (PJS) in patients aged 15–64 years is 93%.
* The cumulative risks of developing a particular cancer from ages 15-64 years are as follows: esophagus, 0.5%; stomach, 29%; small intestine, 13%; colon, 39%; pancreas, 36%; lung, 15%; testes, 9%; breast, 54%; uterus, 9%; ovary, 21%; and cervix, 10%."
Review Transition from acute to chronic postsurgical pain: risk factors and protective factors
However, a rarely appreciated fact is that every chronic pain was once acute.
Wrong Approach to Obesity Can Alienate Patients - Physicians can unintentionally de-motivate black patients
Editorial note: it takes a study to understand this?
"patients may respond unexpectedly if approached in a manner they perceive as disrespectful, condescending, emotionless, or non-supportive,' the authors write."
Friday, May 01, 2009
Webcasts - AACR
Webcasts: "More than 90 hours of selected Annual Meeting talks will be made available as free online webcasts approximately 10 business days* after the AACR 100th Annual Meeting 2009 and will remain accessible for two years. Sessions that are to be webcast will include audio and, if available, slides from the talks.
Note: Only individual talks within a session that AACR has received permission to webcast will be included. For example, if there are four talks in a session and only two speakers give their permission to be webcast, then only those two talks will be made available.
*The Opening Plenary and the Spotlight on Breakthroughs in Cancer Research session will both be available as webcasts approximately 24 hours after they conclude."
Multiple Regions Of Chromosome 8 Found To Be Associated With Different Cancers
this link above is previous research (2008) regarding chromosome 8q24 region and it's wider scope of impact:
The authors' analysis suggests that there may be five distinct subregions within 8q24, separated by sites of frequent recombination, and each associated with different types of cancer. The first subregion is associated with an increased risk of prostate cancer but not with risk of breast, colorectal, or ovarian cancer. The second is associated only with an increased risk of breast cancer. The third subregion is associated with the risk of prostate, colorectal and ovarian cancers, but not breast, and subregions four and five were associated with prostate cancer, but not with the other three malignancies.
"We have shown there are at least five independent loci within this gene desert with different associations with particular cancers," the authors write. "Further studies of the region may identify additional loci associated with specific cancers and possibly refine our understanding of the mechanisms underlying the associations reported here."
Subscribe to:
Posts
(
Atom
)
