Here is an overview of my conversation last winter with my second opinion oncologsit:
ME: "I have LCIS and want to know what I should do"
Oncologist: "You should go home and come back if you get 'real' cancer."
ME: "But isn't LCIS something to worry about?"
Oncologist: "There are a number of things that could kill you before breast cancer."
That conversation pretty much threw me for a loop. I was embarrassed that I had wasted her time, upset that I had worried so much, and felt foolish that I would even considered a PBM.
I went home, stopped going online and generally forgot about my LCIS. It was always there, but in the back of my mind. Maybe the oncologist was right. Who am I to think that LCIS is a bigger deal? So why did my general practice doctor send me a sympathy/support note? Why did my OB/GYN tell me to get it out of my body? Why did my local oncologist tell me that she would not disagree with my decision if I chose a PBM? Were all these people wrong?
There were many times when I would think to myself, "Damn this early detection stuff. What is the point?" If you can't do something about, why bother to get tested? I was mad that I had entered into this whole world of "should I or shouldn't I?" There are no patient advocates for me. It's just me having to make this decision. There is no manual for early detection.
I know that I am lucky. I have choices. I have time. But the problem is that I have CHOICES. I have TIME. What should I do? Nothing? PBM? When should I do something? When is a good time to get her breasts removed and have your stomach opened from hip to hip?
About being lucky. Yes, I truly am lucky. A friend is going in for a mastectomy in two days - she's happy to have found it when she did. Her advice to me - get the breasts off. Other friends who have traveled this route say the same thing. Friends who haven't tell me to 'lop them off' - oh, if it were that easy.
I don't have any particular attachment to my breasts, other than they have always been a part of my body, much like my ears. The thought of removing any part of my body is unnerving. Yes, my breasts can be replaced, but at what cost?
And if I don't? Then what? Coulda, shoulda, woulda? Do I want to kick myself for not acting sooner? Hell no. So, in reflecting on early detection, I do realize that although I am told that I have choices and time I really don't. Combine LCIS with family history, dense breasts, increasing # of biopsies, no children by birth, etc. the writing is on the wall and I need to be smart about being here for as long as I can to take care of the most adorable, loving little girls in the whole world.