Please help me understand

I suggest you get copies of all your tests results and reports & seek a 2nd or even a 3rd opinion from another breast specialist.  Try to find doctors affliated with a NCI - National Cancer Institue. You might also look into to cancer support groups in your area.  These groups can often provide a wealth of information of doctors and treatment centers.Juist being with others that truly understand what you are going through is comforting.

See if your local hospital has a genetic counselor.  My insurance company denied my PBMX twice even though I had ADH and family history.  At the suggestion of my breast surgeon, I met with the genetic counselor who reviewed my family history and provided me with a letter stating what my overall lifetime risk was.  Insurance approved the surgery the day they got the letter. 

I understand your worry and I hope you will get the treatment you deserve and need to alleviate your worry and also reduce your risk.  Please let us know how things turn out.

I had a PBMX a week ago today.  They found LCIS( lobular cancer in situ)) when they did a sterotactic biopsy followed by an excision (lupectomy) 6 years ago.  I had another lumpectomy about a year later with the same findings (more LCIS).  Then came 5 years of needle biopsies after mammos that showed something "suspicious" . I was on a regimen of annual MRI's and mammo's (alternating 6 months) and saw my BS every six months.  He would not discuss PBMX either and just kept saying "one step at a time" whild he talked about how dense my breast tissue was.  I found a lump (again on my right side) and went into see him.  He found two more.We had a tx. plan that we agreed on: repeat mammo and ultrasound, followed by an MRI and then a visit w/ him to make a decision about next steps.  Somehow, in the course of the following week, a needle biopsy was scheduled-he did not call me, nor return my calls when I called and left messages that this was not what we agreed to.

  Long story short, I switched BS and within 15 minutes of our first visit, when I brought up the idea of PBMX, she said she thought it was the best for me at this point given my hx.  So, I had it done-alot of people thought it was a very aggressive thing to do, but when I mentioned the possibility of avoiding chemo and radiation, they got on board.

 I received the pathology report from my BS late Friday.  They found DCIS (ductal cancer in situ)-which I believe is more serious than LCIS in my Left breast (no previous involvment of the left breast).  Because they took all the tissue, the BS said they go clean margins and she didn't think I would need chemo or radiation.  Which is a good thing, because I started reconstrucion immediatly and my understanding (from my PS) was that if they found something and I needed chemo or radiation, reconstruction would stop until those treatments were over.

 LONG winded way of saying this is a very personal decision and one that is often made over a period of time.  One of my close friends reminded me of that after I saw the 2'nd BS. My response was that I've been thinking about this for the last 6 years-it's not like it was a new idea.

  I am SO happy I made this decision.  According to my BS when she reviewed the path. reports last Friday:'  You can go to bed with a smile on your face tonight because you made the RIGHT decision.  If you hadn't, we would probably be having a very different discussion 6 months or a year from now".  Yes, I'm happy I  did this.

  Pat

Val,  I was able to have nipple sparing.  My left looks really good, my right....not so good.  When I saw the PS yesterday, he said he couldn't tell yet, but by next week he'd be able to defiitivly and woud promise me- one way or the other!  Fingers crossed....Pat

Pat - hope all goes well next week.  I think we were lucky to have nipple sparing - some doctors don't do it - they aren't trained and don't even let patients know it is an option.