Hi @deborahmontana
I had bilateral total mastectomies (not radical thankfully, not skin or nipple sparing as I did not opt for reconstruction). After my mastectomies, I only had breast MRIs and chest ultrasounds. If I said mastectomy somewhere, that was in error. I was trying to say your MRI could see things your mammogram didn't and that may explain why your mammo was normal and the MRI was not.

I didn't have oncotype testing either time because I can't have chemo with my pre-x neuropathy and my oncologist doesn't think it would work for my recurrent cancer anyway. I can tell you I'm ER+ PR+ Her2- and have a Ki-67 of 50% this time (anything 20+ is aggressive) so it’s very aggressive now. The first time it was about 17%.

Hope you don't think I was indicating you are litigious. I was just saying because I'm not, I don't spend too much time pursuing the mistakes although I have had plenty of medical mistakes happen to me and my family has had them too. I agree they are very upsetting, but I only have enough energy to focus on where I’m at now. Not only do I wonder if there was a mistake during my mastectomy that spread the cancer, but on my recurrent chest tumor there was a positive margin after surgery. The surgeon only needed to take another mm or 2 so why cut it so close?

There was also a mistake during my radiation treatment and the first 4 boost treatments (28 regular and 9 boost treatments altogether) were not where the tumor was and I had to battle to get it corrected. The mistake happened because my surgeon opened up my old incision and reached to the new tumor rather than creating a new scar so the radiologist assumed the tumor bed was along the incision line as it normally is. I wonder if reaching to the new tumor also contributed to leaving a positive margin?

The cosmetic surgeon also made a mistake by removing my surgical tape too soon and declined to give me the special tape to prevent keloid scarring even though I had a history of keloids. Sure enough, I got excruciatingly painful keloid scars and had 125 kenalog injections in them over 2.5 years to flatten them out and stop the hourly stabbing/slicing pains that also woke me up every night. Keloids are not common and you would know by now if you get them. I’ve only ever met one other person with them. I have a history with them starting at 3 years old when I had the smallpox vaccine and got a large raised red keloid scar instead of the usual little indentation most people got.

The radiologist that did my initial breast biopsy and diagnosed my cancer was wonderful. The nurse told me to wait for her while she was on vacation because my tumor was small and deep and this radiologist doesn't miss. So I waited and she didn't miss. The radiologist later told me that something like only 4 out of 1,000 mammograms are cancer or something crazy like that so she was saying it's like finding a needle in a haystack and radiologists can easily breeze through each image assuming each one is going to be no cancer. Luckily for me, she wasn't one of them. Radiology is one area I think AI might come in really handy in addition to a radiologist reviewing the scan.

Your original tumor was larger than mine. My small 7 mm tumor was caught in an annual routine 3D mammogram. I also had dense breasts. I knew I was in trouble when they told me I had three types of tumors. I figured surely one type would be cancer and it was. Yes, I think my recurrent cancer likely popped up in the year between ultrasounds so I don't think there was a mistake there, but do think it may have recurred due to a mistake during the mastectomy. I'll never know for sure.

When I was first talking to my oncologist about the recurrent cancer in my chest wall and muscle, I asked, "Just for the sake of argument, what would happen if I did nothing right now?" He said the cancer is so aggressive this time that it will be everywhere within months. Eeek. After removing the tumor, we can no longer see a BC tumor anywhere on the scans, but he does believe due to the aggressive nature that cells likely got away to other areas before we removed the tumor. And then there's the positive margin and mishap during radiation. It takes millions of cells to form a visible tumor so it’s just a wait and see with my scanxiety increasing as more time passes. At this point, my advanced cancer is considered incurable, but treatable so I will always be on some form of treatment now and continue to hope for the best. So far, the meds are holding it at bay. I have a lot of medication side effects, some serious, but I can still enjoy life.

I also have 50+ lung tumors (discovered in 2008) from neuroendocrine lung cancer that are very slow growing (Ki-67 2%), but I wonder if my breast cancer were to spread to the lungs would they even notice a BC tumor among all the lung NETs? I hope so, but it would be like where's Waldo? Again, AI might be handy to identify any changes.

Ask your surgeon what kind of margins will be taken to be safe. If you have a mastectomy and don’t opt for resconstruction then be sure to ask about extra non-breast tissue that if left behind falls to your sides even when you're upright. It's uncomfortable and unsightly. The BC world calls it "dog ears" which I find to be a horrible nickname. My former oncologist told me that and laughed. I was told by the cosmetic surgeon in advance that "dog ears" or what he called "side boobs" are the main complaint by women who have a mastectomy. Apparently, during reconstruction that excess tissue is pulled back around to the front. I think my BC surgeon thought I would change my mind and want reconstruction later so I think she left more tissue behind than she should have for someone going flat. Not happy with that at al, but not willing to have more surgery to correct it and can't have keloids on my sides where my arms would rub on them. Egads. You’re doing the right thing by asking lots of questions.