Attitudes Toward Information About Genetic Risk for Cognitive Impairment After Cancer Chemotherapy: Breast Cancer Survivors Compared With Healthy Controls

Conclusion
Results suggest lessened enthusiasm for genetic information that maintains or increases uncertainty about a specific course of action and highlight the importance of including clinically relevant groups in treatment decision-making research that employs hypothetical scenarios. Although women generally believe it is important to receive genetic information, they might benefit from assistance (eg, decision aid) in the difficult task of integrating information about survival and risk for adverse late effects from cancer treatment.

Understanding the problem of inadequately staging of early ovarian cancer (subanalysis of ACTION trial)

CONCLUSIONS: Even in a randomised trial in which comprehensive surgical staging was strongly advised in the study protocol the majority of patients (66%) were incompletely staged. Factors relating to a lack of surgical skills attributed most to the number of incompletely staged patients, but insufficient knowledge of the tumour behaviour and routes of spread of ovarian cancer also contributed substantially to this problem. Multicentre trials recruiting patients from many institutes with small volume contribution to the study, run the risk of inadequate adherence to the study protocol.

NO RESPONSE BY DECISION-MAKERS - sad! Ovarian Advocate - Caelyx for British Columbia Ovarian Cancer Women - funding vs life

FYI - Re: http://www.ovarianadvocate.ca/



February 17th, 2007


Sandi Pniauskas
117 Glen Hill Drive
Whitby, Ontario, Canada
L1N6Z8

Dear Madam/Sirs;

Re: Funding Caelyx for Treatment of Recurrent Ovarian Cancer in British
Columbia

I am writing to appeal to you to ensure that Caelyx is funded as a
treatment for recurrent ovarian cancer, or as deemed necessary, through
patient/physician decision-making. I do this because I have compassion,
understanding and intimate knowledge of the issues which ovarian cancer
women, their families and their friends face. From the initial
pre-surgery consultations to the last breath our ovarian cancer women
take. Research for decades is proof positive that ovarian cancer is the
most lethal of all gynecologic cancers. And yet, how far have we
actually progressed? 'Lethal' today is still the word used to describe
ovarian cancer. And yet, with our lack of decision-making, we actually
in fact consider our ovarian cancer women to be dispensable. They
deserve every chance and in light of extensive research, which you have
already received, the underlying issue of lack of actual access is not
comprehensible to me. I don't believe that I need to educate you on the
evidence-based research which provides sufficient criteria for simply
funding this chemotherapy for ovarian cancer women - today.

Further, it is irresponsible to confuse the economies of providing
Caelyx to ovarian cancer women in need. Confusion -  because it is with
the hopes of remission or extension of life which no economies can ever
truly value in concrete terms.  Further, recent reports indicate that
B.C.'s coffers are flush with funds. It therefore is a matter of
morality and quite simply the ability of the decision-makers to actually
make this decision.

Let us not continue to make mistakes of the past. The disparities in
access to either life-saving or life-extending therapies across
Provinces are well known. As a matter of fact, in the late 1990's,
Canadian ovarian cancer women experienced the very same issue between
Quebec and Ontario. Taxol was accessible to ovarian cancer women in
Quebec, and not in Ontario. It seems we have not yet learned our lessons
and are repeating the same mistakes but at the sacrifice of the valuable
women in our lives. The obvious lesson is that ovarian cancer does not
care where you live, but your survival does. How sad, in fact, that
while Health Care Ministers, Provincially and at the Federal level
discuss these issues, we simply are unable to recognize the deaths - the
actual realities while we wait for decisions. This is not acceptable and
our ovarian cancer women cannot wait. More importantly, the system which
you represent, has failed these women. It is a moral issue and only a
moral issue which stands in the way of ovarian cancer women in British
Columbia having access to this particularly effective chemotherapy.

Since my ovarian cancer diagnosis in 1999, I have been in the very
fortunate situation of surviving. But this survival comes at a price. It
is and has been typically a short term friendship, but one of value,
which words defy. It is and has been their absolute strength and will to
live and, yes, to suffer in silence, that alone deserves our respect by
doing the 'right thing'. You have the ability to give my ovarian cancer
women friends in British Columbia the will and the ability to improve
their life. This is a 'gift' through really a few strokes of the pen.
You can fund Caelyx for our ovarian cancer women in British Columbia. We
cannot wait, we should not have to wait.



Thank you.

Sincerely,

Sandi Pniauskas
email: sandipn@sympatico.ca