Most Breast Cancer Patients do not Have Genetic Testing

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

MARCH 26, 2018

Should genetic testing be the standard of care for newly diagnosed breast cancer patients? I certainly don't have the reliable answer to that question (and I doubt it), but this article from Medpage suggests that fewer than half of those women who should have the testing receive it. It is pretty obvious that not everyone needs this counseling, but probably it is relevant for more women than we first imagined. Who clearly does not need it? One example of not would be a 72 year old with no family history of breast or ovarian cancer; a 35 year old with several first degree relatives who have had these diagnoses obviously should be tested. This leaves a lot of women in the middle.

A few days ago, I wrote about the availability of home testing kits, and I hope I made my opposition clear. This is a complicated and nuanced decision tree, and I strongly feel that women should not be on their own to have the information and figure out what to do next. 

The most important moment for this test, for most women, is very quickly after diagnosis. Often this means that the surgeon is the physician who should be involved in the conversation and possible referral for testing. Surgical decisions may well be impacted by a positive or negative gene test. If negative, the woman and her doctor can continue with the discussion about what is the bet choice for her at this time. If the test is positive, the factor of future risk enters into the discussion, and some women will opt for bilateral mastectomies.

This article is a helpful summary of the current landscape:





Most Breast Cancer Patients Fail to Get Genetic Counseling

Falling short even as need increases for risk evaluations


by Ian Ingram


Fewer than half of newly diagnosed breast cancer patients who should have received formal genetic counseling actually got it, survey data indicated.

Among 1,711 early-stage breast cancer patients with indications for counseling, 43.5% received formal genetic risk counseling, while 31.1% had a discussion with their physician about their genetic risk and 25.4% had no discussion whatsoever. 

"All cancer specialties have the opportunity and responsibility to incorporate genetic counseling more fully into breast cancer management," wrote Steven J. Katz, MD, MPH, of the University of Michigan in Ann Arbor, and colleagues in the Journal of Clinical Oncology.

Among all patients with an indication for counseling studied, 831 patients never received a genetic test following their breast cancer diagnosis -- only half of those (50.6%) underwent a discussion about their genetic risk.

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