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Jun 14, 2012 11:55PM CandDsMom wrote:
I posted on your other thread. I am sorry you have to be here too. (I think it is on my signature below but I had multifocal/multicentric DCIS (in multiple spots in multiple quadrants of the breast) ER/PR (-) grade 2-3 cribriform + comedonecrosis, turned 35 during workup for diagnosis).
Anyway, re the BMX, I had one with R sentinal node Bx over 2 years ago, and I am still good with my decision (it was the right one for me personally). That being said, it isn't the easiest thing in the world to do, and even 27 months out from diagnosis with a great reconstruction I still feel the ramifications of it.
It definitely is better than it was at first, of course, like many women here I went through the fear of diagnosis, the agonizing wait until mastectomy, then the grief that comes alternately for what I lost (my breasts and the sense that if I didn't betray my body it wouldn't betray me, the innocence of life before breast cancer), and the physical loss, the sexual loss, the grief at "sacrificing" a healthy breast (although my final path did show some early columnar cell changes which are actually thought to be one of the first steps on the path to DCIS/IDC). My breast surgeon thought it was way overkill to take the prophylactic breast, my oncologist said it was my choice, my OB GYN said "there is data and there is life, I think you should do it". However, I knew immediately what my personal comfort level was, given my age, the age of my children (nearly 3 and 9 months), my family history, etc.
I remember clearly being in my infant son's room the night before BMX, rocking him to sleep while his hand rested between my breasts and knowing that I would never have that sensation again, of each individual finger laying against me. There is feeling now (pressure, some temperature, in small pie wedge shaped areas some more "fine touch" sensation), and my body did "re-wire" itself for the new normal eventually. For months after my BMX I felt like I was wearing a "boob vest" of foreign things hanging off me and I was numb to my collarbones and behind my arms and even shoulder blades which was frankly an awful feeling. I also had post op complications, severe ones requiring 4 additional surgeries over the next 11 month period. I tell you this not to scare you, but more to reassure you that, with time (and the right MD) it all got better. I knew from these boards to expect the strange sensations so it wasn't as shocking as it might have been.
I definitely recommend taking some "before" pics for your own personal use - I have only looked at them a handful of times post op but am so glad to have them. Also, strongly consider asking your BS and PS about post-BMX physical therapy. I couldn't lift either arm to even shoulder height for several months afterwards and PT helped with that immensely. I got a handout from the BS on post-MX exercised but I was so overwhelmed with everything that it was so much better (for me at least) to go see the physical therapist in person to get specialized help.
Also, if you are getting any nodes taken consider educating yourself further on lymphedema. I only had 3 taken but am one of the 5-15% who have LE post SNB. It is mild, but still annoying and sometimes painful and I have to take precautions with my arm. My BS poo-pooed the notion that I would even have a chance of LE post SNB, but here I am.
I think the biggest lesson I learned through this whole thing is that you really need a physician who will advocate for you BUT you have to your own biggest advocate. Don't be afraid to speak up, to ask for a second opinion. It is important to remember that no one is as invested in your outcome as you are.
Best wishes to you as you go on this journey.
intermediate to high grade multifocal multicentric ER/PR negative DCIS. HER-2+ of unclear significance. s/p BMX