elsie37 - This is a very interesting question and I hope we'll all get to see some feedback on this question.
Looking back removing my breasts at Stage 0 (LCIS) would have been a good decision but I was monitored for 2 years and ended up with bi lateral mastectomy at Stage 1. Although I caught it early (good news), if "I knew then what I know now"......I would have opted for the mastectomy before my cancer became invasive.
I think the medical thought is that you may NOT get invasive cancer at all and then a doctor has put a patient at risk with an unnecessary surgery and the possible complications. BUT, I absolutely think women should have the option of having the mastectomies at any point in their treatment if they choose to do so.
It was telling to me that the physical therapist treating me for post mastectomy lymphedema shared that she had her breasts removed and had reconstruction at age 40 when diagnosed with DCIS because...........she had seen so many patients with lymphedema and cancer that had spread to their lymph nodes that she didn't want to put herself at that risk. This was a medical doctor who opted to remove her risk so she wouldn't have to go through what she was seeing her patients suffering. I think that is telling.
Another question I always ask oncologists is whether or not they have ever used chemotherapy or radiation on themselves even though they don't have cancer or whether they would use chemo and radiation if they got cancer. All of them, of course, say no they have never and would never use a drug on themselves if they didn't have the disease (which is of course the 'right' answer) but I'm often put off a little as they recommend treatments which can have devastating side effects and at the very least very troublesome side effects and say it's not that bad.........when they've never actually experienced anything close to the experience they are putting their patients through. (I have had this conversation with the several oncologists I'm working with for my cancer, my husband's and in the past my sister and step father, it is not received positively ...no surprise). I just think doctors need to remember that for each person diagnosed with cancer it a difficult diagnoses and that as doctors they have had to shield themselves from getting too personally involved in each patient but that can also mean they don't really hear their patients or understand that each one is unique in their ability to handle risk and make these very tough decisions. Since there is little chance we will change how doctors behave, as patients we must educate ourselves, reach out to others for feedback and have the right to make whatever decisions we feel are best suited to our ability to best manage our disease, our lives and our health.
I'd love to see any feedback from surgeons and oncologists on this issue.

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