Posted on: Dec 23, 2009 09:56PM, edited Jun 30, 2010 09:15PM by TNLady
I had a bilateral nipple sparing mastectomy with immediate reconstruction on December 15, 2009. In my research I did not find a lot of posts about this particular procedure. I wanted to start a forum for women who have had the same surgery, or who are considering this type of procedure. We could share helpful information on pre/post operative concerns or suggestions. So if you have questions or suggestions please feel free to post. I look forward to hearing from you! :)
Lingo used on thread:
BMX-Bilateral Mastectomy (both boobs)
UMX-Unilateral Mastectomy (one boob)
NSM-Nipple Sparing Mastectomy (saving nipple and skin)
SSM-Skin Sparing Mastectomy (saving the skin, but not the nipple)
TE-Tissue Expander (used to stretch skin and muscles before placing implant)
To find out where nipple sparing procedures are done near you, go to the link below:
Mayo clinic explanation of NSM on youtube.com:
NSM & SSM: What to Ask Your Surgeon
Questions for Your General, Breast or Oncologic Surgeon
Questions for the Plastic Surgeon
Posts 3451 - 3480 (3,747 total)
Sep 1, 2012 11:10AM Kate33 wrote:
Tina- I think I misspoke before as I wasn't thinking clearly. My BS is a surgical oncologist. She is 2 hours away, though, and I was getting a little ahead of myself thinking about chemo and needing a treatment place closer. I've decided to travel back down to her and find out what exactly is going on. If worst case scenario happens I'm sure she can refer me to someone closer to home. I'm optimistic though that this is going to turn out to be nothing. I just never expected to hear the "O" word!
Thanks everyone for the support! It means a lot. I'll keep you posted. Hope everyone has a wonderful and safe weekend!
Sep 1, 2012 02:41PM Sherryc wrote:
Kate thinking about you. So glad they are being cautious but truly hope it turns out to be nothing
Sep 1, 2012 05:32PM TinaT wrote:Kate33 - If you have/had a good relationship with your BS, sounds like getting in touch with her is a logical next step. Good to have someone else in your corner to help you figure this out. Try to relax until then....always easier said than done, right? You know logically that worry is not going to affect the outcome one way or the other so might as well enjoy each day and take things as they come. Sending good "much ado about nothing" vibes your way!!!
Sep 1, 2012 05:34PM Soyaandpepper wrote:
Kate33-hoping its nothing!
Sep 3, 2012 12:04AM Beckers wrote:
Kate, I am new to posting to this thread but I feel for you. I had a spot on pre-op chest xray, which was ok on CT scan, but the wait was one of the toughest by far.
Sep 4, 2012 08:41PM vmudrow wrote:
Kate - I've been out of town and just read up on your test results :( So hoping it turns out to be ok - sending prayers your way!! Keep us posted!!
Sep 5, 2012 05:37PM Beckers wrote:
Things went great at PS appt. today. Infection clearing up well. I had nipple sparing and he wants right side covered for showers so it doesn't get wet. Any ideas on what to use to cover?
Sep 8, 2012 12:33PM Kate33 wrote:
Beckers- Sorry no one responded about your question. I didn't have your situation so didn't have to keep it dry. I'm suprised your PS didn't give you a suggestion on how to do that. Not sure how you would do that other than to take baths for lower half and sponge baths for upper half. Don't see how it would be possible to keep the right side completely dry during an actual shower. Did you come up with something? Glad to hear the infection is clearing up.
Valerie- I received a call from my BS's office. She said the findings on the CT scan of my sternum do look suspicious but she was still waiting for the films. Once she receives them she's meeting with the multidisciplinary board to review and make recommendations. It could take up to 2 weeks. Sounds like they would pass me onto a medical oncologist anyway so got the ball rolling on an appointment with one closer to home. (My BS and cancer center are 2 hours away.) Luckily, there is a brand new Banner MD Anderson Cancer Center just 20 minutes away now. They said it could take 2-3 weeks to get my records, though. So either way I'm in a limbo state for at least 2 weeks. I know it's unlikely that it's anything but can't keep my mind from going there.
Sep 8, 2012 01:41PM TinaT wrote:
Beckers - Also sorry....I didn't have an answer either so didn't chime in. I wasn't allowed to shower after my MX and exchange surgeries until my incisions closed and drains out. When I did deal with an open (but not infected) wound for many months, but I was told to let soapy water run over it. I wasn't allowed to swim, soak in a bathtub or spa, or exercise (to prevent sweat from entering the wound). I think I've heard of taping that super-sealing saran wrap over wounds, but personally I would feel nervous about trusting it.
Kate33 - This just doesn't sound right. Obviously, something is lighting up, but so many things can show up on bone scans and CT scans that I still think it will be something other than bone mets. Dang it! So sorry you have to live on pins and needles again. That part of this journey should be in your rear view mirror now. (((hugs)))
Sep 8, 2012 01:51PM Kate33 wrote:
Tina- I think their concern are the accompanying symptoms I've been having- pain, tenderness and fatigue. My doctor said there would be less concern if I had the symptoms but scan was clean or abnormal scan but no symptoms. I think they're just being extra cautious which I appreciate. I really don't think it's mets either but something is going on. Just want some answers and soon!
Sep 8, 2012 02:15PM Beckers wrote:
Hi girls, thank you for responding. I think it would be hard to keep it dry in shower too. The right nipple is supposed to slough off one of these days. It started, but it's taking it's sweet time. I will just keep sponge bathing to be safe. Patience is a virtue right? Ugh.
Kate- sorry you are still waiting. Impossible not to think about it I am sure. I will pray it's nothing. Hang in there.
Sep 9, 2012 09:31AM sweetie2040 wrote:
Beckers- Glad to hear your healing well. Yes be patient! It seemed to take forever for me when I had black scabs on both nipples. I wanted to pick at them sometimes and small pieces of black skin were coming off. It sounds like yours are going to be fine so hang in there.
Kate-Sorry to hear you have to wait to so long to know whats going on. I guess you are right though it is better for them to be very thorough given your history. Most likely it is not anything serious. It is frustrating waiting though. Hang in there Kate.
Sep 9, 2012 07:26PM Beckers wrote:
Thank you for the reply Sweetie2040. I just wish it would hurry and fall off. How did your come off, little by little?
Sep 10, 2012 08:45AM 301724 wrote:
The top layer of my right nipple sloughed off about a week ago. The skin just got stringy. I kept bacitrain and a pad on it. Once the skin was off, it bled a bit. The PS said that was a good sign. Now nice and pink. No ointment and not pad.
Sep 10, 2012 11:23AM jill47 wrote:
Rebecca, my black left nipple finally was dealt with by my PS 8 weeks post nsbmx when I was under during a bi-lateral debridement surgery 8/27. No parts of the scab ever fall off and we were patient waiting for it to fall off week after week after week. End result: 1/4 of it survived. My right nipple will be reduced to match the left one post exchange and I will have two really new looking and pretty boobies. The nipple is healing nicely and I'm hoping my stitches will come out tomorrow. Hang in there girl....as sweetie says most times these scabs fall off and all is o.k. but I totally understand your concern and frustration. I went into the nsbmx knowing there were risks and no guarantee for a perfect outcome.
Kate, I haven't said a word yet to you about your latest battle, but I've been thinking of you often and praying everything will be o.k.
Hope everyone is healing well.
Sep 10, 2012 11:46AM Beckers wrote:
I will continue to wait. I had about a sixth of it come off and bleed in the beginning and it cracked around the edge but then it seems to have stopped. When I clean with saline sometimes I wipe a bit harder just wishing it would slide right off! It's gross.
Sep 10, 2012 04:40PM Fearlessfoot wrote:
Beckers: just to let you and others know, my reconstructed nipple (PS used excess breast skin from non-cancer breast) did not survive. It turned black and didn't seem to heal. It was under a bandage so I didn't see it much. My PS took off the black eventually. I can't remember when, maybe 4 weeks. Then it had to go under a bandage again until it completely healed. It healed as a flat circle and I finally got the okay for swimming and soaking baths at 6 weeks. But now I have only one "headlight" which bothers me for symmetry's sake. So in October I will see the PS to find out what my options might be. Any advice from anyone?
Sep 11, 2012 02:44AM Beckers wrote:
Fearless, can your PS build the flat one up to match. That's what mine said he would do. I told him I want to go braless and I don't want permanent headlights.
Sep 11, 2012 08:05AM sweetie2040 wrote:
Beckers- It took quite a while for everything to heal. Small pieces of dead skin peeled off. Then there were scabs on the nipples and sometimes they bled a little. I was using bacitrain but it was drying everything out too much and iritating my skin. My Dr switched me to Auqaphor which was much better. I was worried too but I read how a lot of the women had the same black scabs so it was very reassuring. Now I know that's pretty much a normal part of this process. Most of the time things heal just fine and the nipples are healthy. Hang in there. Patience!
Sep 11, 2012 11:38AM Kate33 wrote:
Beckers- I know it's hard to be patient but the scab will fall off when it's ready. I had to keep telling myself it's like the umbilical cord on my DS's belly button after he was born. You just want it to fall off already because here's this perfect little baby with this icky cord. But you can't rush that and you can't rush this either. Hang in there! It will happen soon!
Sep 11, 2012 02:52PM Beckers wrote:
Thank you. I'm trying to be patient. (I really want a shower too. Ha.)
Sep 17, 2012 10:54AM Fearlessfoot wrote:
Beckers: thanks, but build the nipple back up with WHAT?! I've heard using inner thigh skin, labia skin, under arm skin, artificial things like the acellular dermal matrices (ACM like Alloderm). Someone told me about nipple "scarring."
Sep 17, 2012 10:59AM Beckers wrote:
Fearless, I don't know how they do it. I definitely plan to talk to him about it because my left is almost a bit concave.
Sep 17, 2012 11:30AM Kate33 wrote:
Beckers- If your PS doesn't do fat grafting you might want to consult with someone who does and see if it can be used for something like that. Seems like that would be the most natural and less invasive way to fill it in. I know they use it for the divots left behind from lumpectomy. I wonder if they could somehow use it to fill underneath?
Sep 17, 2012 11:51AM Beckers wrote:
Kate - I bet they could. I know my PS recently went to FL to train for fat grafting so I'm hoping. Round 1 was to get the flaps on and to survive. I was hoping that would be it but honestly, the nipples look like they belonged to 2 different people right now. Scab is almost gone on right side. Yay. How did your tests go?
Sep 17, 2012 12:15PM Kate33 wrote:
Hi Rebecca- I'm still waiting! Can you believe it? My BS's office called to say they finally got the images. (They had to be mailed from Phoenix to Tucson.) She thinks the 3 spots on sternum look suspicious but doesn't think it's mets. She wants them reviewed by their rads onco, though, and he was on vacation. He was supposed to review Friday or today and they will get back to me to tell me what the next step is which will probably be order pet scan. I'm also still waiting to hear from MD Anderson. They are requesting all my records to review and give their recommendation. So still in limbo. Thanks for asking. Good to hear your PS is trained in fat grafting. Sorry you're dealing with the complications but hopefully that will be a quick fix.
Sep 17, 2012 12:54PM gritgirl wrote:
Kate: New here because I'm about to have bmx with immediate reconstruction with an implant. I have metastatic breast cancer to the liver. My MO has found that PET scans throw a lot of false positives so she'll do CT and bones scans instead. Just throwing that out there. So sorry you're going through this scare. It sucks.