A home for PBM'ers due to LCIS

Hi Misty. I'm only newly diagnosed first with PLCIS, then after the MRI, multiple papillomas and something suspicious on the other breast which is getting MRI guided biopsy next week. Fingers crossed for no invasive disease. Even if it turns out in my favor I'm leaning very heavily toward PBM. I just don't know if I can take the stress and my kids are so young, and I'm so young! I'm so sorry about your sister. I can only imagine what they has been like. Good luck next month. You'll be in my thoughts.

Kelly

Hi Misty,

I know we have chatted before on this forum. What is your June date? The 8th is it? It really helps to discuss how you feel and such. I am 4 days away from my surgery (gulp) and I won't say I'm not scared. I do feel all the confidence in the world for the doctors that are working on me and that I'm doing the right thing. Some one told me the worst part is before the surgery. I started taking Xanax for sleeping. It helps.

Kelly mentioned little children. I have a 4 yr old and it is hard to manage, but that is why grandma and my brother and husband are going to be here as well as friends and neighbors. My son's classmate in daycare is a mess, turns out his mom just died of BC last spring. Every time I turn around, I see the writing on the wall. I'm doing this for all those I love including myself. My mother survives stage 4 cancer. She finally told me, this is no fooling around. I am done being sentimental, feel I must go to battle and protect life. I'm afraid, but who goes into battle fearless? I know I will win, so that's a plus too! You will too. I will follow how you do. Hang in there!

Khandler- You are on my calander. Nothing but good thoughts coming your way this week. I'll be checking to hear your fab progress. Really glad you have support on the way.

Misty- My MRI biopsy is coming this Friday. So sorry for your tears this week. If you ever need a live friendly ear I'll PM you my number.

 My kids are: 7,5,3, and 17 months. They don't know anything but "Mommy's breast hurts and that's the reason for all the doctor's appts."  I too feel guilty for my anxiety about all this when there are so many others dealing with much more. My sister in law (only 30!) has liver mets and finds out Monday whether the chemo has had any effect.  So I can't tell my family anything yet- so it's especially nice to have you all.

Hi MistyJ -

I agree with whoever said that the PBM was the best thing they ever did. I had LCIS, ALH, ADH, some family history, dense breasts, etc and didn't want to deal with alternating mammos and mris, nor did I want to take tamoxifen. So, that left the PBM. I was scared up until the night before when I was very peaceful about the whole thing. Having a great team of docs you trust was key. Plus knowing that I was doing the right thing for me. As you will see from this board, PBM is not the right thing for everyone and I respect each person's choices.

So, anyway, I had the PBM with DIEP in Boston on March 29. I kept a blog starting with my decision making and going through the surgery/recovery and pretty much up to this past week. It was helpful to me to be able to process and bounce my thoughts off others from this board and other boards. My blog address is:  http://www.breastcancermom.blogspot.com.

I also agree with you that it was hard to find a home. We are not battling invasive cancer, but we are battling non-invasive cancer. I did find a home with the BRCA community, which was so supoortive of my LCIS situation. And our local breast cancer support community welcomed me, regardless of my 'level' of breast cancer. We are all battling the same horrid disease to some extent. I do consider myself very lucky, although I had my days when I wished it was someone else who had these nasty little cells in their body.

I am very much at peace. Having a 2% chance of breast cancer feels wonderful. I wish all of you who are in a decision making mode or a waiting mode the best as you move forward.

Hi Misty. I am four years post-PBM and have never had a moment's regret.  It is the best decision I ever made!  My mother had bc twice (once in each breast) and died from invasive bc.  Her sister also had bc and died from complications of treatment.  Thanks to screening in a high risk clinic and fine needle aspirations, I knew that my risk was very high and that my cells were changing in a very worrisome direction.  When I learned that my lifetime risk of bc was 85% (which I found out shortly after my mother's death) I decided to get a PBM.  It was, for me, a no-brainer.  Emotionally, a little difficult but I knew it was right.  I had my initial surgery in July 2006 (double mast with tissue expanders) and woke up smiling.  My final path report was a parade of horrors, including numerous kinds of bad cells and multi-focal LCIS.  Both breasts were bad and on the verge of something awful.  I subsequently got an exchange to silicone implants, then had nipple reconstruction.  I look much like my old self and can walk through a gym locker room with no one the wiser.  My scars at this point are very faint.  I paid a very small price for a very big benefit.  I am so happy now, and both of my children (now in college and graduate school) are so happy their mother made this choice.  Both helped during my recovery, and were happy to drive me around to give my husband a break.  I recovered quickly and missed only 2 weeks of work.  Until we have better chemo prevention or a vaccine, a PBM is (I feel) the best solution for many women  who face bad odds and don't want to gamble.  I sleep easily at night and love my silicone-filled, cancer-free boobs.  Good luck with everything.  If you have any questions about the surgery or recovery, please feel free to ask. 

MistyJ, How are you?

My PBM was a Godsend. I am so glad to be off the high surveillance routine. I am humbled by my results and am so glad for a woman's right to choose...mastectomy or no.

Hey Misty and all! Hope everyone's having a good summer Saturday night.

I had a biopsy a few weeks before the surgery. I was told I probably had 3 tumors, one suggesting aggression, and a necrotic spot...all in one breast. Once I picked myself off the floor, I had a 2nd opinion at MD Anderson which cooled the differential possibilities.

Long story short, I elected for the bilateral instead of high risk surviellance every 3 months at a location several hours away from home. My local hospital provided the bilateral. The grace, competence and compassion I experienced along the way inspire me still.

I stopped while ahead. The $400. 10 minute consult with a PS sent me running for the door! Ya'll who go through recon are made of sterner stuff than me.