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Topic: Nipple Sparing Mastectomy with immediate reconstruction

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Dec 23, 2009 07:56PM - edited Jun 30, 2010 07:15PM by TNLady

TNLady wrote:

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:

BC-Breast Cancer 

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)

DH-Dear Husband

PS-Plastic Surgeon

GS-General Surgeon

BS-Breast Surgeon

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:

http://community.breastcancer.org/forum/44/topic/750056?page=2#idx_48

Mayo clinic explanation of NSM on youtube.com:

http://www.youtube.com/watch?v=hJk1K_0pXt8

NSM & SSM:  What to Ask Your Surgeon

Questions for Your General, Breast or Oncologic Surgeon

  1. Where and when did you receive your general surgery training?
  2. Are you board certified in general surgery?
    If not, why not?
  3. Are you in good standing with the medical board?
  4. How many mastectomies do you perform on a yearly basis?
  5. What type and percentage of types of mastectomies do you perform most?
    (types are: lumpectomy, traditional mastectomies, and skin-sparing mastectomies)
  6. Are you familiar with and do you perform skin-sparing mastectomies?
    If not, would you please recommend a general surgeon who is, for a second opinion?
    If yes, how many have you performed?
  7. Is there any reason why I would not be a candidate?
    (The main reason would be that breast skin is invaded. Note that skin is not the same as breast tissue! Or if the breast cancer is at an advanced stage. Read inclusion and exclusion section.)
  8. What will the scars on my breast look like?
  9. Do you have photos of your mastectomies to show me?
    If not, please show me a medical journal photo that resembles your work.
  10. EXACTLY what skin will be removed?
    (If it is most of the breast skin, then it is NOT skin-sparing!)
  11. EXACTLY where will the scars be located?
    (You may want to ask your doctor to DRAW the scars with marker on your body.) With a skin-sparing mastectomy, the marks MUST be drawn in a KEYHOLE pattern, (i.e. under the breast fold, coming up to and around the nipple.) A traditional mastectomy will be one or two long incisions across the front of the breast, leaving little or no breast skin.)
  12. Who will do the marking for the incision? You or the plastic surgeon?
  13. Can the plastic or oncoplastic surgeon do the marking?
    If not, why not?
  14. If not reconstructed at the time of mastectomy, then what communication are you, the general surgeon, going to have with the plastic surgeon about the incisions placement before the surgery so you have the best possible cosmetic result?
  15. Am I a candidate for immediate reconstruction (at the time of mastectomy)?
    If not, why not?
  16. If I have future reconstruction, will the surgery leave my breast skin so I can have a skin-sparing mastectomy?
  17. What plastic surgeons do you work with?
  18. Will the plastic surgeon do the pre-surgical marking and determine the location of the incisions?
  19. Would you be willing to provide me with the name of another general surgeon for a second opinion?

Questions for the Plastic Surgeon

  1. Ask the questions above, making the appropriate substitutions.
  2. Do not be shy to ask to see photos of their work, and for the name of a second opinion
TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 24, 2009 03:47AM ally1423 wrote:

hi tnlady....there are several of us on the "onestep alloderm site"....i just had that surgery on nov 20th....i'd love to talk to you

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 24, 2009 08:20AM - edited Dec 24, 2009 09:14AM by TNLady

Thank you for responding ally1423.  Actually, I think I read some of the posts in your forum.  I did not know what the alloderm was until I looked it up.  I did not have the alloderm.  I am a little over a week from surgery.  I went yesterday to get the drainage tubes out-that was a big relief.  I was actually able to sleep last night.  I am a little worried about one of my nipples, it is very dark in color and red around it, no drainage though.  I asked the nurse yesterday, but she did not seem too concerned about it  My doctor said their was a chance that I could loose my nipples because he is very aggresive when cleaning out the tissue in that area.  Did you have this problem?

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 24, 2009 01:57PM ally1423 wrote:

where are your incisions? mine was at the bottom of the areolas...they are still healing...the left healed faster than the right. how did they do one step without alloderm...what keeps the implant in?....if your incision is there...they will look red, even black from scabing, and hopefully they will heal

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 24, 2009 02:09PM - edited Dec 24, 2009 02:14PM by shiny

Hello ladies,

I am 42. I am tri neg and when I had my double mas with emediate recon, it was a diep flap recon which ended up as a double SIAE. I did not have nipple sparing, I had a tidy "disc" shape of skin from my tummy where my nipples where and the fat from my tummy for the breast shape. 9 months later I had nipple recon and eventually tatooing. I just thought I would detail that as it is amazing what they can do now. So just to put your mind at ease, on the very unlikely chance that you have to deal with loosing a nipple, a good reconstructive surgeon can "make you a very realistic one". I have a very good round shape to my breasts and they hang naturally, so this procedure what the right choice for me.

Take care and best of luck. Good Idea for a thread!

Shiny

Dx 5/2007, IDC, 2cm, Grade 3, 1/16 nodes, ER-/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SIEA flap; Reconstruction (right): SIEA flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery Lumpectomy: Left; Lymph node removal: Underarm/Axillary
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Dec 24, 2009 02:15PM unklezwifeonty wrote:

I'd echo what Shiny says. Plastic procedures are amazing now. In fact if I am given a choice, I'd rather get rid of the nipples to eliminate the risk of BC and get the artificial ones.

Lumpectomy 8/2009. Chemo Start 9/2009. 4 DD ACB -> 4 DD Abraxane (Taxol Reaction) + Zometa Dx 7/2009, IDC, 3cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2-
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Dec 24, 2009 04:42PM ally1423 wrote:

ok ladies, now i understand.,...tnlady must have had that type of procedure, probably wasnt implants. that procedure sounds very nice, i had asked about that procedure, however i didn't have enough excess fat/skin for that. glad you ladies are happy and doing well.

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 26, 2009 10:49AM - edited Dec 26, 2009 11:30AM by TNLady

Hi Ally!  I hope you had a wonderful Christmas.  My incisions are near the fold of my breasts.  I'm not sure if my implants are under my pecs or not, I will be asking my plastic surgeon on Monday.  I was a little shocked on my visit last week when I got my first look at my new breasts, so was not thinking a lot about what questions I had about my procedure.  Going into surgery I was thinking I would most likely have tissue expanders.  So, I will have to get back to you regarding your question on how they stay in place.  I'm thinking they are under my pectoral muscles, but I have read if the skin is thick enough they can just put them under the skin.  I defiantly have a few questions to ask my plastic surgeon on Monday, I think I will try to write them down so I don't forget this time!:)

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 10:59AM TNLady wrote:

Shiny, thank you for sharing.  I'm glad to hear things have worked out so well for you.  It is nice to know that if I do lose my nipple they can make me a new one!  I have looked at a lot of before and after pics where people have had that done, and they did look very good.  My nipple looks about the same today, but I will know more on Monday after I see my PS.

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 11:06AM TNLady wrote:

Thank you for your response Unkle...  Yes, I have read that there is a small chance that the BC can come back in the nipples, so that is a very good point.  It just makes me cringe a little to think about losing my nipples:(

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 11:29AM TNLady wrote:

 Ally, actually I do already have my implants. Originally, I was going to have tissue expanders, but there was enough skin for my doctor to go ahead and put in the implants.  I did not want to go with a larger breast size, so that may have helped a bit.  I may even be a little smaller, which is fine with me.  I am very active and sometimes large breasts can get in the way!:)   My GS made the incisions under the fold of my breasts, which also allowed for my PS to give me a little breast lift.  I was starting to get the middle age breast sag!  I think with the nipple sparing procedure it is more common for the surgeon to make the incisions around the areola, like you had.

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 11:59AM Beets wrote:

TNLady-

I had my bilateral nipple sparing w/te on the 5th of Nov. After about a week and a half my rt nipple began to turn black. This was the breast that had the tumor. My GS said that because he had to aggressively remove so much from that breast, the chances of losing that nipple were very high. My PS decided it was best to remove it and because she addressed it early enough she was able to preserve the base of the original nipple. My PS has told me that I can either leave it as is after the TEs are removed or she can create a more symetrical nipple from the remaining tissue.If possible, I would recommend taking care of it asap rather than waiting for the tissue to all die.

Beets

Dx 6/5/2010, IDC, 5cm, Grade 3, 9/10 nodes, ER-/PR-, HER2-
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Dec 26, 2009 12:20PM ally1423 wrote:

TNlady, beets....my right nipple looked black to me....i was very concerned...the ps looked at it and said it is healing and would be fine...he was right in a few days the black scab came off....after surgery i was told to apply bacitracin daily to the nipples......good luck....ally

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 26, 2009 12:39PM TNLady wrote:

Beets, thank you for your response.  Yes, mine began to turn black the week after surgery.  Mine happens to be on the breast that I did not have cancer in. The nipple on the breast that had BC is looking okay.  I knew going in that this could be a possibility, so I had prepared myself.  I go back on Monday, which will be two weeks after surgery, so I will find out the verdict then.  Where were your incisions? 

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 12:41PM shiny wrote:

Good luck TNLady on Tuesday! Hope you had a good Christmas.

take care

Shiny

Dx 5/2007, IDC, 2cm, Grade 3, 1/16 nodes, ER-/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SIEA flap; Reconstruction (right): SIEA flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery Lumpectomy: Left; Lymph node removal: Underarm/Axillary
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Dec 26, 2009 12:49PM - edited Dec 26, 2009 12:50PM by TNLady

Ally, I hope that is the case.  I have been applying triple antibiotic ointment.  There is still no drainage, so maybe it will be okay.  I have also been putting the ointment on the spots where they took the drainage tubes out. 

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 01:13PM Shrek4 wrote:

I had that done (without alloderm - with Lattissimus Dorsi flap and silicone implants at the time of surgery under the pectoral and lattissimus dorsi muscles) on the left side (prophylactic) - the right areola and nipple had to go as there was DCIS too close to the nipple and a suspicious area on some ducts in the nipple itself. The incision was from the areola down on the "good" side and same for the BC side with an extra incision laterally (to remove the biopsy scar as there is the scare it might have had "seeded" cells from the stereotactic needle going out).

Unfortunately I had lost my areola/nipple. It blistered right after the surgery due to the underneath cauterization, then the PS didn't take care properly of it and took me off antibiotics so it got infected and had to come off.

I am not VERY upset about it - as I was told by all surgeons that the chances to have any sensation on that nipple were close to nil - the nerves being completely severed. The only thing I am a little upset is purely esthetic. But I'll have them both re-done (I have a small piece of skin from the LD donor site grafted where the areola was removed on the BC side and it survived very well)

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Dec 26, 2009 01:39PM PB22 wrote:

I had the nipple sparing mastectomies two weeks ago.  One had early stage and the other was propylatic. Drains for two weeks and now out.  Everything looks good. Incisions are lollypop, under areola and down.  implants are mentor gel placed under the muscle held up with a mesh pocket created.  Feels like a burning, tight, scraping feeling, still on pain meds. Anyone farther along in the process can tell me how long they were on pain meds. 

Skin sparing, nipple sparing bmx Dec, Onco score 15. "Your only as young as your implants". Dx 10/21/2009, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 26, 2009 02:00PM Beets wrote:

TNLady-

I have a lateral incision from the nipple to my armpit on each side. My GS did not do what I think they call a keyhole incision. I have healed quite well despite having my drains in for 7 weeks. Just had my first saline fill up on Tues. after the drains were finally removed. What is triple antibiotic ointment? Is that anything like Neosporin?

Dx 6/5/2010, IDC, 5cm, Grade 3, 9/10 nodes, ER-/PR-, HER2-
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Dec 26, 2009 02:02PM - edited Dec 26, 2009 02:02PM by KEW

You can see in my signature line what I've had done.  It has been over a year since BLM and my exchange was in May.  I'm on the picture forum if you want to see.  My PS was very careful and so he only added 125cc at BLM we waited two weeks and then added 50cc a week, with a few breaks in there.  After I was expanded to 750cc we waited at least 2months before exchange surgery.  I could have used a lift, from nursing two kids, but we've opted not to do that because we really don't want to move the nipples.  Do I have Playboy breasts? No, but I have two beautiful breasts that look like my own did, except they are perkier.  My incision is from the outside of my aureole towards my arm pit, and much of it has faded.  For me, it made a huge difference after mx, to see myself, I looked like me, but deflated, and it was OK.  I feel comfortable with my breasts, change in the gym, etc.  I feel lucky, my nipples always remained pinkish, they respond to cold and stimulation, although I have no feeling.  Since we didn't do a lift, I have some step-off at the upper pole which we will attempt to soften with fat grafting in May or June.  I think it is important to move slowly, let things settle, see how it looks. Happy to answer any questions.

Yes, I do have Alloderm slings on both sides. 

Best--KEW 

Age DX: 48. Dx Oct 2008, IDC, 2.6cm, Stage IIa, Grade 2, 0/10 nodes,100%ER+/Pr+, HER2-, Oncotype Score 15. BLM with reconstruction Nov 2008.
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Dec 26, 2009 02:06PM TNLady wrote:

PB22-We are about the same amount of time along.  I am still taking pain meds, only 1/2 a pill only when needed.  Today has been the longest time I have been able to go, which so far, has been ten hours.  I also have the burning, tight feeling in my chest.  I feel like I am carrying bricks around on my chest.  I have the same brand implants too.  Mine are finally starting to soften up.  I have nice cleavage, but they look mushed in near the bottom of the fold of my breast.  My PS said it would take about six weeks for them to drop.  The hardest part has been trying to find something comfortable to wear over them.  The swelling is down enough for me to put on a sports bra, I had bought before surgery, that zippers in the front, but it still seems to cut into me.  The sports bra helps hold everything in better and makes it more comfortable moving around.  Has your pain been bad?

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 02:19PM TNLady wrote:

Beet,

 Yes, it is the generic version of Neosporin. LOL  I don't know how you made it 7 weeks with drains, they drove me crazy!  I have read where some women have had them out too soon and had to go back and have their breast drained, so it is better not to rush it.  I did not have the key-whole incision either.  My incisions were near the curve of my breasts. 

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 26, 2009 02:34PM PB22 wrote:

TNLady, thanks for sharing your experience.  I am so unco mfortable was wondering if I was doing something I shouldn't be in the recovery which isn't much.  Pain is pretty bad with shooting sharp pains which the PS said would happen as nerve endings repair.  I am trying to transition to tylenol to keep a clear head.  PS said to use cocoa butter which was purchased at whole foods and needs to be placed in a microwave for softening.  My gel size is 375, seems small compared to most I'm reading. Was a C before.  I am hoping to be that again but not complaining considering the circumstances.  One thing I am noticing is that since most of my breast tissue was removed, I am feeling the cold when I drink cold water. Takes awhile to warm up again.  I guess its lack of the fat insulation.  I live in Fl so its not the weather.

Skin sparing, nipple sparing bmx Dec, Onco score 15. "Your only as young as your implants". Dx 10/21/2009, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 27, 2009 06:05AM ally1423 wrote:

hello ladies....pb22. i had b/l mx one step procedure with alloderm, silicone allergan implants, my incision is at the bottom of the areola, it is almost healed. i have to tell you that my only problem is PAIN, my surgery was nov. 20. i went back to work dec. 10. my pain is mostly the pec. muscle. i am still taking percocet 10mg every 4h and i'm taking soma 3x day, that's a muscle relaxer. i have a very low tolerance for pain. every time i try to cut back, it doesn't work out.i'm no martyr, i just want to feel good, some of us just experience more pain, if i have to take meds for several months, then i will, the ps said the muscle has to work in, i guess it's a slow process. cosmetically i look very similar to the way i did before, just higher and a little fuller.....i was a little droopy before, it's amazing but i have no scars from this procedure, previously i had a lumpectomy on the right and excisonal biopsy on the left, and i have faded scars from those procedures. also i had alot of pain in the right nipple, but it wasn't constant, it was totally black and i thought for sure i would loose it, i applied the bacitracin directly on the nipple and areola, then applied a sterile 4x4, i used a sterile qtip to apply bacitracin (u can buy them at surg supply store) i did this once a day after a shower  and washing the area with soap and water. TNlady and beets i think your nipples will be ok, mine are looking better each day, and one week ago it was completely black, i believe this happens because it is healing from the inside out. i'm not wearing a bra yet, it's just comfortable without one, the foobs don't move around yet, so i don't need a bra, i've just been wearing dark colored shirts. most of my old bras are paded, push-ups...can't wear those any more, i also have that cold water thing that pb22 has ....it's so weird.....i think we pretty much all want the same thing....we want our boobs to look nice and be a good size after going through reconstruction, i think it's ok that we feel that way, pb22 i think it's ok that you want to be a size c, since that's what you're comfortable with.....wishing you guys the best...keep in touch, also i wanted to mention that my ps now wants me to massage the boobs/pec muscle area with lotion to break the muscle in, i have been doing this......i guess the healing is a slow process, and it will just take time........take care....ally

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 27, 2009 08:41AM PB22 wrote:

Ladies and Ally, thanks for all your helpful input.  I had not known to expect this much pain for so long.  I was prescribed percocet from the GS and hydrocodone from the PS.  With the percocet I can function more around the house, I was afraid of depending on it, but the tylenol was useless and the hydrocodone took the edge off but made me foggy.  I was wondering how people can drive and go back to work.  Its a relief to know that others have this cold sensation when drinking cold bev. like wearing two icepacks.   Concentrating on trying not to walk hunched over.  Tomorrow will be three weeks post op.

Skin sparing, nipple sparing bmx Dec, Onco score 15. "Your only as young as your implants". Dx 10/21/2009, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 27, 2009 08:52AM PS73 wrote:

Hi ladies.  Hope everyone is having a good holiday.

I am having BMX with Nipple Sparing and alloderm on Jan 8th.  This information is helpful.  Kew, I am having the same type of incision (from outside areola to armpit).  The type of nipple sparing they are doing for me is not cutting around the areola but scraping out the cells behind it.  This is fairly new, Sloan and another hospital were involved in a very large trial on Nipple Sparing with favorable results.  I feel confident about my BS and my PS. 

Unfortunately Im allergic to muscle relaxers.  Will the pain be manageable w/o muscle relaxers? 

"Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense” Dx 4/23/2009, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR-, HER2+
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Dec 27, 2009 09:36AM ally1423 wrote:

ps73...there are all different types of pain meds....you might be lucky and not need any, many women have reported very little pain, unfortunately that was not my case, you should get a prescription for pain meds before surgery and have it filled...this way, if you need them you will have them there for you....good luck...and as you can see we're all doing ok....ally

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 27, 2009 09:44AM TNLady wrote:

PB-I too am having the sharp pains now and then.   It is very cold where I live and when I get chilled I get weird sensations in my chest, I think it is from my pecs tightening up.  I am also very itchy all over, not sure why. I'm hoping that is not from my implants.  Maybe it's some kind of side effect from surgery.  I have only been put under one other time, it that was years ago.  My PS put 650 implants in, which he told me I would be around the size I was before or a little smaller.  I was also between a C and D cup, depending what brand bra I bought.  I am not having the cold sensation you are having while drinking, maybe that is something that will go away with time.  Is the coco butter to help with the scars?  I still have my stitches in and the tape over them.  It is so nice to have someone to compare things with, Thank you!

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 27, 2009 09:55AM TNLady wrote:

PS-thank you for joining.  I did not take muscle relaxers after my surgery.  I know some doctors prescribe them, but my dr did not.  My doctor prescribed Lorcet 10/650 tab and after the first few days  I only needed a 1/2 pill every six hours.  I am almost at the two week mark and I don't have to take them as often.  Of course, everyones pain tolerance is different.  What seemed to bother me the most was the tightness in my chest, maybe muscle relaxers might help that, but it was not unbearable.  I wish you the best of luck with your surgery and please keep us posted!  If you have any other questions of what you might need before or after sugery feel free to ask, we are all here to help.

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-
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Dec 27, 2009 12:25PM ally1423 wrote:

hi ladies....good news...survived today just taking advil.....i think i had a set back on monday, i lifted a bag of laundry and i think it inflammed my pec muscle ....i felt it right away...it's finally starting to subside....just want to caution you guys so that u can learn from my stupid mistake....don't do any heavy lifting....ally

Dx 4/4/2009, DCIS, Stage 0, Grade 3, 0/2 nodes
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Dec 27, 2009 03:52PM TNLady wrote:

Ally,  thank you for the encouraging words.  Sorry about your set back, but it sounds like you are doing better now.  I guess it is just going to be a slow process for all of us.  Before surgery I was working out almost everyday, with weights, walking, elliptical, etc.  I'm starting to get a little stir crazy!  It is very hard for me to not be up and moving around more.  Are you able to doing any stretches or exercises yet?

TNLady Dx 10/31/2009, DCIS, Stage 0, Grade 3, 0/4 nodes, ER-/PR-

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