I am always appreciative of articles discussing insight into bilateral mastectomy.
Unfortunately, the Angelina media spots covering her "announcement" did not offer a lot of actual BRCA and/or genetics education. Most of the news stories and articles did put the idea of breast cancer risk in the forefront of women's minds as well as the idea of prophylactic mastectomy/mastectomy.
That is awareness…and that awareness brought with it the ability for women to more easily have breast cancer conversations with their doctors.
Anything that is a conversation starter--I view as a positive.
The issue that I see (and I go into more detail in my blog) is that doctors aren't referring patients to genetic counseling to correctly assess risk…so that they themselves (as well as their patients) may truly understand the breast cancer risk involved--which is a huge part in the decision making process of any mastectomy.
Did this 40 year old woman actually receive genetic counseling? Was she actually BRCA negative or just no family history? I know you said she had no family history of cancer but who was it that was deciphering her family medical history, asking questions, and deciphering her cancer risk? The counseling is a huge piece of the puzzle as the genetic counselor is an expert who knows how to correctly probe and analyze cancer risk. Primary care doctors are not trained nor do they have the time to accurately assess a patient’s genetically linked risk for cancer. It is not their area of expertise.
You say the patient was 40 years old (younger) …was she of Ashkenazi Jewish descent? Had the 40 year old woman had any previous biopsies or other medical conditions? It is unclear in this article if those issues were addressed. I would be curious.
Without the information to these questions--puzzle pieces are missing it is unclear. It may have very well been in the best interest of the patient to go the mastectomy route--it may not have been.
I completely agree with you that physicians need to remember the principle of “primum non nocere” — first, do no harm. But included in that "first do no harm" is for the doctor to make sure their patients are properly evaluated so that they can make the best possible recommendations to them; and so that the patients can make the best possible medical decisions for themselves. That includes referring to genetic counselors and encouraging 2nd opinions.
Amy Byer Shainman BRCA /Hereditary Cancer Health Advocate @FloridaForce http://thebrcaresponder.blogspot.com
Miranda FieldingAmy, thank you so much for your detailed response. With regards to the patient I wrote about, she was not tested for BRCA, she did not receive genetic counseling, she had not had previous breast biopsies and she is not of Ashkenazi Jewish descent. Even though she was not my patient (I am her client) I did ask these questions. I absolutely concur with the value of genetic counseling, and with that more physicians would utilize this important resource, available in most major medical centers. I recently had a patient who had to make the difficult decision regarding post mastectomy radiation for bilateral locally advanced poor prognosis breast cancers at age 38--she was found to have Li-Fraumeni syndrome, a likely under diagnosed genetic predisposer to early breast cancer but also to radiation induced cancers. She sought, and I actively encouraged her, to seek second and third opinions from oncologists and genetics counselors at both MD Anderson and the Dana Farber. All of these opinions were valuable and helped her come to a decision she could live with. Again, thanks for your input.