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