Mastectomy Revision

Hi Everyone,

I need to dump

I do know some have had it much worse than I, and I know I should be grateful for what I have, but I feel like whining…

Let me also preface this by saying I still would not change my decision of having had the mastectomies  All of this is better than being faced with cancer again, and anything I can do to reduse the risk, I am in favor of. 

When I finally met with my breast surgeon after my excisional biopsy, I did not know my BRCA status and he believed it was going to be negative because of my lack of family history.  (As a matter of fact, he actually wrote BRCA negative in my chart which I had to have changed.)  Anyway, he suggested a nipple/areola sparing mastectomy.  He explained that if there were any recurrence it would be “superficial and easily removable.”  The same day I met with my plastic surgeon, and she said I was not a candidate because they were too saggy and cosmetically it would not work out.  I was fine with that, and scheduled my mastectomy for two weeks from that day.  Two days later I received my BRCA1+ result, the next day I left for vacation.  I came home 3 days before surgery.  When I showed up for surgery and the PS met with me to draw all over me with her purple marker, she said she rethought the surgery and decided she could do the nipple sparing procedure.  I had no real time to process any of it, so I said go for it.  I had expanders a few minor infections treatable by oral antibiotics, and then exchange surgery for silicone (not gummy bears) 3 months later. 

This is where I am now…  Cosmetically some would say they are wonderful (my husband does) and with clothes on they look good.  They are both encapsulated (rocks) one level 3 one level 4.  My PS says deal with it because I am someone who just forms capsules??!!!  Also the left nipple is in a weird place, kind of off to the side.  It’s like a lazy eye.  Of course there is no feeling or sensation other than aches and pain which is deep within not a surface skin sensation.  Also the nipples are so erect that I have to wear heavily padded bras or several lined camisoles.  So much for being perky and going braless, the one positive thing I expected.  I will say, my nipples were never a big happy button for me, so it’s not a big deal in that respect.  I do have an overwhelming feeling of uncomfortableness.  Between the bee stings from nerves healing, the numb/aches, and the overall tightness, I feel claustrophobic; like I am trapped in my own body.  I do not know if that makes sense or not.  Picture the little brother from the movie “Christmas Story” who was all bundled up for the snow and fell over and could not get up…

Now here is the kicker, when I went to Boston to plead for chemo, they expressed some concern regarding the nipples.   Dr W. said they would review it with the surgeons at the tumor conference, but he did not think they would recommend me to do anything.  Well guess what, they did call and they think I should have them removed.  They actually called me twice to make sure I understood.  Last week I met my new oncologist (whom I LOVE by the way) at CINJ and she and her tumor board agree.  There is no data about what my actual risk is, because nipple preservation is so new.  It is done on BRCA people but only on prophylactic mastectomies.  Once there is a diagnosis of cancer, all bets are off.  I think they are more concerned about a new primary because of the BRCA, more than a recurrence of the TN, but the lines between new primary and recurrence are so fuzzy.  I did tell them what my original surgeon said about it being superficial, etc, and boy did her eyes roll.  They said it was ultimately up to me if I want the surgery; it depends on my risk tolerance.  Well, duhh, I have seen 2 oncologists in NYC, 1 in Boston, and now 1 more at CINJ, obviously my tolerance for risk is nil. 

So that is where I am.  I am seeing a new PS next week, and I see the new breast surgeon and a new ob-gyn the first week in June.  Nothing is scheduled yet.  My husband is hoping I do not get the surgery on one hand (he can’t help himself) but on the other hand he understands (how big of him) and supports me.  He just needs time to absorb all of it.  He gets it and I know he will come around.  He jokingly said just don’t remove my butt (he is a T&A guy).  He is a good man and has been there with me all the way, just sometime his testosterone steps in.  It’s just tough to deal with because I am also facing the hysterectomy which I might schedule the same time as the revision.  My brain knows that my organs do not make me a woman, but my heart is aching.  I have 3 healthy kids, I am done with all of that, but first my breasts, then the rest of it…  I know I know I will get through this, I am strong, I am a survivor, I have heard that my whole adult life, but you know what, sometimes it just gets old being so strong…

Thanks for letting me vent…