My wife had this operation about 19 months ago at age 45 after testing positive for the BrCa1 gene. Her mother, grandmother and maternal aunt all died early of breast cancer. One of her cousins is currently in treatment for cancer.
I too was highly skeptical of the surgery initially, but it is supported by a significant amount of research.
Even before the test she was increasingly worried that she would follow in her mother’s path. This surgery gave her a chance to actively fight the disease. It was not a decision she took lightly. It was very painful, but things are pretty much back to normal now.
Of my wife’s 3 sisters, one other had the gene and also had the surgery. I have 4 daughters who have a 50% chance of having the gene. They will probably be tested in their early 20s and possibly consider surgery after they are done having children Hopefully by that time there will be better treatment options.
My best to your and your family. I know it was a difficult decision or your wife and family, a very personal one. We all hope for more choices, more options in the future.
Until we know for sure, it is advisable to keep your daughters from any unnecessary X-rays. It is possible (research and new guidelines reflect this new thinking, but do not go so far as to state WHY the recommendation) that X-rays (including Mammograms) can effect the breast tissue of BRCA1 carriers in such a way as to instigate the growth of a tumor. What is happening is that women with BRCA1 mutations go for their annual mammogram and then find themselves with a fast-growing tumor six months later. Some in the medical field (American Cancer Society for one) made the conclusion and recommendation that BRCA1 carriers should have should have both an MRI and a mammogram every year. Others have suggested that they get more than one mammogram a year.
That’s careless thinking, taking one thing as the golden standard (the mammogram) and stating that this needs to remain in place without considering it might be the cause. And pointless, in my opinion, if both the mammogram and MRI are performed at the same time.
The thinking is that the MRI can catch cancers that the Mammogram would have missed and likewise the other way around, but what really needs to be considered more closely is cause and effect (some researchers are).
Detection is necessary if a cancer is there, but not “key” as many people say, prevention is. If your wife has been recommended to get yearly Mammograms still (believe it or not, I have read that these are still recommended for those with prophylactic mastectomies) please research and come to your own conclusions on mammograms or not, MRI’s etc. Certainly BSE’s are recommended still and those should be more than once a month.
Quoting headlines written by journalists that lead with a conclusion that doesn’t REALLY represent the scope and implications of medical research is as flawed a way to keep up on medical news as any news. (That comment is not for you personally, but for those in this discussion that appear to have gotten their medical information on this topic that way.)
Here’s to the future and better options and a fine long life for you and each member of your family.