Raising Awareness Without Raising Unnecessary Procedures

Recently actress and director Angeline Jolie Pitt went public with he decision to have her ovaries and Fallopian tubes removed as a precaution against ovarian cancer.  This follows her double mastectomy in 2013 to address her risk of breast cancer.

Her willingness to discuss these decisions is admirable, and hopefully her example can prompt thinking and discussions around cancer and cancer risk with all of us.  But, as we keep learning over 43 years in to the ‘war’ on cancer, the disease, and the decision on how to address it, remain complex and challenging.  Jolie Pitt has been clear in noting all of the factors that led to her decisions and the careful thought and discussions she had prior to making those decisions.  However, press coverage has focused on the choices more than what informed them.  (In other words, if you are considering following Jolie Pitt’s lead, please read her pieces in full, and talk to your family and doctors, before proceeding.)

Before I discuss the risks and consequences of significant preventive procedures, two items worth noting.  Jolie Pitt is in a position to spend the time and money to obtain high-quality medical care many people might not have.  The genetic testing that informed her mastectomy decision is likely cheaper today (since Myriad Genetics patent-based competitive advantage has been weakened), it is still expensive, as are the numerous procedures involved in a double mastectomy and the removal of ovaries and Fallopian tubes.

For what it’s worth, I’m in the midst of a similar, but much less serious, medical situation.  I may not get to the point where something needs to be removed, but the possibility is no longer abstract for me.  I mention this now as it has come up since I last posted on the risks and consequences of preventive screenings.

It cannot be repeated enough – Jolie Pitt has a family history of both breast and ovarian cancer, and the latter was the cause of her mother’s death.  Right away cancer screenings would be recommended earlier and perhaps more frequently than for a woman of her age with no family history of cancer.  Her’s is a special case, and not representative of an ‘average’ breast or ovarian cancer patient.

Jolie Pitt also had genetic counseling following a positive test for a mutation in the BRCA1 gene.  Absent symptoms or the detection of a tumor, genetic information is often considered in terms of probabilities of risk.  These probabilities need to be discussed and considered, not just in terms of the consequences of the disease, but in terms of the consequences of the preventive treatments – treatments that may turn out to be unnecessary.  A person has to determine what their threshold is for deciding to take the risk of a preventive procedure.  Nothing about this is binary, yes or no, either/or.

There are also other medical options.  While she does not go into details, Jolie Pitt notes that for both breast cancer and ovarian cancer that there are alternative procedures that women can take to address these diseases.  As she wrote, “A positive BRCA test does not mean a leap to surgery.”

The risk calculations connected to diseases are based on the existing knowledge base.  Nature, in its latest piece on the ‘Jolie effect’ notes that there are many possible explanations of an anomalous mutation, and not all of them represent risk for a disease.  If testing companies do not have the same database of test results to compare against, then what may be an unknown mutation for one company could be something another company knows.  The odd result may also reflect non-material characteristics of the tested population.  If a particular demographic is not proportionately represented in a tested population, than it is possible that outliers in their genetic results could be related to that demographic characteristic, rather than the presence of disease.

So, what Jolie Pitt did was long considered, and based on discussions with several medical professionals, family history, and results of several medical tests.  If her example is to have the best possible effect, all of these factors need to be part of the story.

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