New here and terrified!!! NSM???

dmarie- Like fire-dancer said, don't rush into a decision.  It's obviously not something you can change your mind about.  There is a definite loss when it comes to MX and I think a lot of surgeons down play it.  Until you've had one you don't really get that.  I didn't have great breasts (as you put it) either but I'd give anything to have them back now.  I've gotten really good results with my reconstruction but these foobs, as we call them on here, don't really feel like they are a part of me.  Maybe that will come in time.  That being said, I still think I made the right decision in choosing MX (and my final pathology report confirmed this) but it doesn't mean I don't mourn the loss of the old me.  So please do a lot of soul searching before choosing and be at peace with your decision.  As far as your questions- It's great you can have NSM.  There was a study that just came out that said women who are able to have NS are in a much better place psychologically and emotionally afterwards.  The level of pain is kind of subjective.  It was painful, but not as bad as I thought it was going to be.  Definitely doable.  Time off work is kind of subjective, too.  I think a lot has to do with how good of shape you are in going into the surgery.  Some return within a few weeks.  Others 6 weeks.  The TE's themselves are kind of uncomfortable.  They are very hard like a turtle shell and you may have them in for a few months.  And as far as post mastectomy pain syndrome there really is no way of knowing who will get it and who won't.  Some have pain from the pectoral muscles being stretched to cover the implants.  Some have nerve pain from all the nerves being cut during surgery.  Usually all of this goes away with time.  One thing you might look into is immediate reconstruction.  Since you are a small B you may be able to have your implants placed at the time of mastectomy and skip the TE's all together.  Something to think about.  Good luck with whatever you decide and know we are all here for you!

Where in Pa. are you? You can pm me here. I had a pbm in May but didnt have reconstruction. I did great. Pain was minimal. I have two great surgeons to recommend if uou are in my area. It's hard at the beginning, but you will do fine. Nan

HI DMarie,

Like you, I struggled with this decision. I had lump, then re-excision with close margin. I am 44 with young kids and I don't want a recurrence. So I chose BMX, nipple sparing on the right breast with hip flap tissue transfer. I had the same anxieties and fears you list above. I prepared myself for change, and kept telling myself I was maximizing my survival doing this. There was some sadness the week before surgery, and hey, life is not fair. But five days after the BMX I am CERTAIN I made the right decision. It is wise to understand the SEs but also try to focus on the positive--that you do have options and you are in a position to decide, getting all the info you need to make the best decision for you. You will get through this, and we are all here to help. 

Hi DMarie

I had my LCIS diagnosis in Philly last August, had my PBMX in December 2010 at Penn Hospital and am doing fantastic.  It was a no brainer for me since I had dense breasts, period at 11, no kids and a mother who died of breast cancer.  How ironic though that my sister (age 46) was diagnosed with IBC and DCIS two weeks before my mastectomy so I truly believe it was coming for me.  I cannot speak highly enough about Dr. Sataloff (breast sugeon) and Dr. Louis Bucky (PS) who are in Center City.  Seriously...Dr. Bucky is a miracle worker.  My breasts look awesome and for what little bit of sensation that I lost, it was well worth it to not have to go through chemo.  If you live close by, try to have a consult with Dr. Bucky and Dr. Sataloff.  Feel free to mention my name if you would like.  Arlene Flick.  Also, I detailed the entire process in my blog if you want to find out what I went through in terms of pain, recovery, etc.....  The site is www.arleneflick.blogspot.com   Feel free to contact me at any time.  I've spoken to quite a few women going through exactly what you are going through.

Dawn - I hear you, loud and clear - there are so many things that CAN happen, but no one knows IF they will happen. In your original post, you said the docs said that BMX was an OPTION for you - so that indicates that there is another option, lumpectomy & maybe radiation . . . what about going and talking to another set of docs, just for comparison's sake? This is a very gray area in oncology . . . like you say, there are many women who won't go on to develop IBC and who've had MX unnecessarily. And are there pain "experts" who you might be able to consult on whether you have an increased chance of PMPS? I don't know a lot about this stuff, but if you really are at an increased risk, I gotta say that 10 years of screening really wasn't so bad . . . if I imagine what being in chronic pain must be like in comparison - I'd take the risk, save my breasts for now.

I had lumpectomies (had to have 3 to get clear margins) 10 years ago and don't regret saving my breasts for those 10 years, at all. In fact, when I was dx'd with a new BC this past June, we even seriously explored lumpectomy again for the other side . . . I REALLY did not want to have BMX, at all. Ultimately, I decided to go for it, kicking and screaming all the way. I had NSBMX w/immediate reconstruction, and like Kate33 said, you might be a candidate for this, too - no expanders, straight to implant (I was and am a . It hasn't been an easy couple of months, but it hasn't been hell, either. By far, the worst part was the anticipation. I was in excellent physical condition pre-op and it still has taken me a couple of months to get to, say, 75% of my pre-op energy level. I have no sensation in my nipples at all, but sensation is coming back all around my breasts. I was never into my breasts physically at all, but like you mentioned, I will really miss the sensation.

This is a big deal, but as others have said, there isn't a rush - I was dx'd in June, had my surgery mid-Sept. (I waited 'til my daughter was back in school). Take your time so that you are comfortable w/your decision, whatever it is . . . and keep asking questions and visiting different threads here. It is unbelievable what great resources there are around here - and we all understand what you're going through!

Hang tough . . . .

Sarah