Nipple Sparing Mastectomy with immediate reconstruction
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Tweedy Bird, Most of us who have had nipple sparing have had our cancers in the duct. It depends on how many cm's from the nipple the cancer was found. Sounds like yours was far enough if it was removed during the breast reduction procedure. Your surgeon should take a frozen sample behind the nipple during mastectomy and send it to the path dept.during the procedure to determine if you keep the nipple. You should have an MRI to see if there is cancer present in other areas to help you decide if the mastectomy is what you want. The statement your doctor made about it being risky just because its in the duct would cause me to seek another opinion from a surgeon that routinely performs the NSMs.
Congratulations Crunchy Poodle, glad to hear all went well.
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TweedyBird, I believe you are asking all the right questions, but I also feel your personal situation is rather complex due to the recent reduction & the DCIS being identified as high grade or grade 3. This could also indicate a higher chance for recurrence as well. Was your tumor triple negative? Finding BC after any cosmetic procedure is considered rare, but ultimately this proved to be a huge blessing in disguise for you in obtaining early detection. Unfortunately, with a reduction pathologists never know where the BC originated since only some tissue is removed. Some PS's require a breast MRI before this type of surgery. In fact, I think it should be considered a standard. If not, this would be the perfect time to consider the MRI prior to any decision making, as PB22 mentioned, to provide a clearer pic of whats going on in both breasts. With a NSM, it is my understanding a tumor must be at least 2 cm away from the nipple/areola complex to safely perform this procedure. Again, this is why the MRI may help your surgeons decide what is best for you now, 3 months since your surgery. If the test is negative for suspicious findings, perhaps nipple sparing would be a viable option. Gather all the facts, seek a couple opinions, take your time & decide what is best for u. Best wishes!
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I know not all BS do NSM since I think it is a more complicated surgery. I had been told going in that they would have a pathologist would be right there and say if it could stay or not. The cells were taken out and examined before a final determination was made. If you have a surgeon who is not going to look at the possiblity of saving your nipple, then you might need a second opinion. I know of others who have had to go to a different surgeon to get one who were familiar with the procedure. It did make a mental difference for me I know.
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Thanks Sweetie!
It's because of people like you that I was able to keep a positive attitude and feel well prepared for the crazy bc journey! Tweedybird~ I'm glad you are asking questions and researching. You can't assume the docs will know or offer the latest procedures. I knew about NSM from reading this board from the day I got diagnosed. I was frustrated to find that it was really hard to ascertain which surgeons in my area specialized in this. I was extremely fortunate to have the first breast surgeon that I was referred to (by my GP) was not only an excellent reputable surgeon...but she had just started doing NSM about 3 years prior. The PS I ended up going with (and loving!) is the one that encouraged her to try it and performed her first NSM with her back then! They have done many together since then so I felt really lucky to have two people working as a team that really respected and admired eachother working on me in the operating room. It made it worth the wait for my surgery.
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Been offline for Christmas and wanted to jump in here. TweetyBird: You've gotten a lot of good advice above. My experience with NS mx is this. I was small... barely an A cup. My BS at first didn't want to do NS because it is fairly new process. However, he changed his mind when I sought to do a prophy on the other side. He told me that a lot had to do with A) how far away the cancer was from the nipple and
if, during surgery, they took a biopsy of the tissue directly under the nipple and it was found to have cancer cells, it would have to be taken. Finding a surgeon is the hard part, and you need one who is familiar with the process and who is confident in doing it. Mine was wonderful. He told me the theory behind saving the nipple was similar to saving the skin. We offer women skin sparing surgery, and lumpectomy, which saves the nipple. They say there is no difference in prognosis/survival between mastectomy/lumpectomy, so the thought process behind this is, well, if we're saving the nipple with the same prognosis on lumpectomy, why the heck are we taking it on women during mastectomy?? That is how he phrased it. It makes sense. Provided there is no cancer during the surgery behind the nipple, and dependent on how far away the cancer is from the nipple, is the determination. Smaller breasted women are supposed to fair better in this type of surgery with necrosis of the nipple because there is better blood supply. It is possible to do the procedure on larger breasted women, but according to my BS, the chances of necrosis goes higher because there is more skin and it takes longer for the blood to reach the nipples. Best of luck to you!Oh, and I did keep both nipples! One has sensation, one does not... yet.
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Hello All-
Posted on December surgery thread, but re-posting here as well...
One week boob-iversary! Things are looking up from recliner-land. Can not believe a week has passed (in a blur). Prophylactic NSM (with TEs) last tues afternoon. Home from hospital on thursday. BS called late Sunday night (Sunday!--just one more reason I love him forever,--he actuallyapologized for calling on a Sunday! Pretty sure the man never sleeps.)...path report came in...side that had the 3 prior lumpectomies/LCIS had more of the same (actually, a lot more than he actually expected-- he said there was a fairly extensive amount). No LCIS on left side but said there was abnormal activity that definitely did not look right, but was not cancer. (Might have been the activity that lit up on last MRI?) He said this MX was undoubtedly the best decision I could have made for myself--I would have been facing constant suspicious findings and untold number of surgeries. I truly never had any second thoughts once I made the decision to do NSM, but hearing this just confirmed my belief that our gut instincts are usually right on.
Used a hand shower that attached to tub to rinse off yesterday and wash hair and made my way uptown to PS to have the 2 drains removed--what a relief--those were really horrible and not for the faint of heart (aka: me). BTW--I lived for a week in hoodies that had those inside pockets (Columbia had them and a company called Alternative made super soft ones too)--they were perfect size for drains. Took a valium before having drains out (pretty sure it did nothing-should have had vodka!)--really strange sensation--painful but literally took less than 10 seconds on each side, so in the scheme of things, not major. As far as constipation that seems to be a major issue---thanks to erythrymyacin I had completely the opposite problem! The antibiotic turned my stomach inside out. All seems to be healing well--one nipple is pretty red and PS anticipates blistering but said not to worry, just apply bacitracin and keep it covered. Still VERY sore and tight--I have real stitches not steri-strips (I get rashes from the adhesive)--these come out thursday. Seems like I was filled to about the same A cup size I started out as. The boobs are still looking a bit banged up, but I think pretty incredible for just one week out. Pretty much just taking Tylonol now for pain. In 3 weeks PS starts fills to get me to the "boob goal" of a full B ( I am just 5 feet tall and 110 lbs, so can't go too big). Right now, aside from the vice-like tightness, my biggest problem is a hacking cough that... well...you can imagine how awesome that feels (cough started prior to surgery--it is just lingering).
I'm in NYC and I used Dr. Swistel (BS from Cornell Weill Hospital) and Mark Sultan (PS from Roosevelt Hospital)--they have worked together before and agreed to operate on me together out of Roosevelt. There are no words that express how I feel about these two guys (and as you can probably tell, I am never at a loss for words). One of the sweetest parts of this story--I had my lucky button charm on a chain from my grandmother's sweater ( I am beyond superstitious when it comes to certain things, particularly this 50 year old button!)--I asked if it could be wrapped in plastic and brought into surgery--the PS looked at me and just said, "how about if I wear it for you while I operate?" and he put it around his neck and off we went. I feel so blessed to have had these two docs who are talented, compassionate, responsive and have been so unbelievably supportive.
Will take next set of pics after stitches come out and try and figure out how to start getting them all posted. I practically lived on these boards for weeks (at work, at night when I couldn't sleep, on my blackberry,...) and knowing what to expect was such a gift from all the women here...one I will try and return.
Sending much love and good wishes to all...for anyone considering NSM (esp prophylactic), please feel free to PM me...
Ilene
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Oh Ilene... I just love your docs too! The part about him wearing your grandmother's charm during surgery had me tearing up!! I love hearing such positive, inspiring stories!!
I too have been devouring these boards since the day I was diagnosed...have spent HOURS upon HOURS researching and perusing these boards and agree that it really was instrumental in mentally preparing me for this journey and I felt totally empowered going into surgery. There is nothing like hearing stories from real women who have been there done that!
I look forward to seeing your pics! (I just posted mine over there too.
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TweedyBird- You've gotten lots of great advice but just had to chime in, too. My original BS tried to talk me out of NSM but then I found out she wasn't even trained in it. Make sure whoever you're consulting with that they actually do NS. You should get the straight answer then whether you're a good candidate or not. Like others have said a lot of us who were considered great candidates had DCIS and the D stands for ductal meaning our cancers were in the ducts. That is where the majority of all BC's start so your doctor's comments really don't make a lot of sense. As long as the cancer isn't close to the nipple, once you remove those ducts, there's no way for the cancer to feed into the nipple. Like already stated, they will scrape some cells within the nipple during the MX while you are still under. If any are detected they would remove the nipple at that time. Current research shows that the rate of recurrence with NSM is the same as regular MX. I would definitely seek out some other opinions before deciding.
takeadeepbreath- My final pathology report was very similar to yours. There were multiple areas of cancer that had never been detected. It sounds crazy but I was almost glad since I stopped second guessing my decision to have a MX instead of a lumpectomy. My BS said I would have been right back in for a MX down the road. Loved the story about your PS, too, wearing your Grandma's charm. What an awesome doctor!
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I just wanted to update that I got my path back, I've been upgraded to DCIS, grade 2, several centimeters. Due to the BMX there is no further treatment, I am still amazed that mamms, US & MRI's saw none of it. DCIS was in 7 out of 12 sections taken for pathology of one breast. The other breast was found to have abnormal cells/activity. In the words of my BS I was a sitting duck, it was a matter of time till it became IDC. I am the youngest diagnosis in my family now (36) out of my mom, aunt & g-mother. I am working to get my 42 yr old sister into a facility that will meet her needs and take our family situation seriously to ensure she gets the surveillence she needs.
Now to focus on the healing-part...I am still so grateful for the opportunity to keep the nipples and now I feel like I did it right, took my time and found the right Dr's...I couldn't be more grateful right now...
But still, I am pretty floored by this having gone unseen on the prior tests, but more than relieved that I followed thru with the BMX, I felt it in my gut and here it was.
Thanks to all of you for the continued support...I feel blessed to have found BC.org!
~this is a re-post from Dec MX as well~
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Hi, girls - I had my post-op with my surgeon today (6 days after NSM). He took off the bandages for the first time and told me I'm having some skin die-off. He said hopefully it will scab over and later reveal healthy skin underneath.
I'm wanting to do some walking or something to improve my circulation (whatever I can to boost the odds that healthy skin and hopefully my entire nipple will survive). Surgeon said wait until after Monday (when he sees me again) -- but I don't want to wait that long. How long did you all wait until you did some walking outdoors?
The good news is, the final pathology is in and confirmed the cells under the nipple were benign (not even ADH!), AND, best of all, my closest margin is 1.3cm!!!!!!!!!!!!! I had been worried they would recommend radiation because after my last re-excision, the deep margin was less than 1mm, and I had DCIS beyond the anterior margin. Of course, with such wide margins this time, my surgeon didn't even mention rads. Yahoo!!
As I was reading the path report on the way home, it said that grade 3 DCIS was found... previously, it had only been grades 1 and 2... so wow, I'm definitely glad I got that out of me before I try to get pregnant!
I forgot to ask the surgeon if it's okay to start eating foods and taking supplements that boost circulation (garlic, cayenne pepper, niacin, etc.). I'll ask on the alternative board but does anyone know?
Oh, and I got my drain taken out... hooray... like fire-dancer said, now to focus on the healing part! fire-dancer, I'm so grateful too... this has been a year-long journey for me, but I wouldn't change a thing. Every step of the way has been what was right at the time, knowing what I knew then. Now, onward and forward!!
Ilene, that is so sweet about your surgeon and your grandmother's button charm! Now that is an awesome, caring surgeon!!
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CrunchyPoodleMama,
I did some research back when I had my NSM and what you can do is eat garlic naturally in your foods but don't take the capsules at this time. I can't remember what the controversy was but I did buy the capsules and refrained from taking them! Cayenne is safe no matter what and so is Tumeric and Arnica. Niacin I took prior to my NSM and I think I may have taken it a few times after my NSM. I personally remember doing some walks about 4 days after. I hope this helps!
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That does help; thank you so much! Too bad most surgeons don't seem to know about basic nutritional things that can improve circulation and therefore improve the outcome of a NSM!
I was thinking about that a lot today reading an info sheet that explained why smoking can cause a NSM failure. Smoking constricts the capillaries and therefore limits the oxygen that gets to the nipple/skin. Doesn't it stand to reason that niacin (for instance), which expands the capillaries, would have the opposite effect and increase the oxygen that reaches the nipple? But, when I asked my surgeon, he said there was nothing that can be done to improve the odds of the nipple "taking"... *sigh*
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CrunchyPoodleMama, I can't think why eating garlic in natural form would be anything but helpful. Yum, spaghetti with olive oil and garlic! SOO thrilled you don't have to have rads!
fire-dancer, My original mammo noticed one or two small spots (less than 1cm each) of DCIS; three lumpectomies and I could never get a clean margin. I feel lots of twinges about anxiety about my other breast - I never wanted even a single mx, let alone bilateral, so I'm very afraid that one of these days I'll get an unwelcome surprise. I hate mammograms - feel they were completely unhelpful in my case.
cc4npg - I had heard on BCO that only small-breasted women could have NSM, but my BS and PS both assured me that I'd be OK. (I'm - ah - 34DDD!) My PS did a lot of measuring, including from my collarbone down to the nipple. Maybe because I'm very small, so the distance wasn't that terrific? But women with larger breasts can definitely have NSM - just wanted to share what my amazing surgeons routinely do. They seemed very unfazed by my size.
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Hi Ladies, I'm a registered dietitian and licensed nutritionist so I'll chime in here. Garlic and Tumeric have an effect on blood coagulation therefore are to be avoided prior to surgery so you do not bleed out. It causes blood thinning even though you are thinking in terms of oxygen to the nipple, the surgeon has to worry about getting you to stop bleeding and excessive blood loss and your cardiac status if blood pressure were to drop while under. The same effect as aspirin.
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PB22, thanks for weighing in... I definitely avoided garlic, turmeric and anything else with a blood-thinning effect before surgery, but now that my surgery is over with and I've started to heal, I have been taking them again in hopes of improving blood flow to the area. (This morning, I drank cayenne tea... hot spring water with a half-teaspoon of cayenne pepper... it wasn't too bad! I may try a whole teaspoon tomorrow!)
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Okay, girls... even though I've read the "blackening nipple" pep talk many times on this thread, now that it's happening to me, I'm still freaking out just a little. My nipple is very dark and dead-feeling right now. My BS told me Monday it's likely to scab over and reveal fresh new skin underneath, just as you all said, but how do you know if you're losing the nipple instead? And what happens if you "lose" the nipple... does it completely fall off??
Remind me how long it takes for the scab to fall off? I'm 15 days out from surgery and looking a little scary!
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I still have a scab on one nipple, it's a decent size, too - a part of it has fallen off and it is pink underneath, and my other nip had a small scab and that too fell off and now its all pink and pretty! I am 3 1/2 weeks out from surgery and still nipple-watching. I was told at PS office this week that they look "great" ...I'll feel better when they are both looking pink & healthy...I hope this helps, good luck!!!
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That does help; just knowing a general timeframe is immensely helpful! So happy for you and your nipples (ROFL - file that under "Things I never dreamed I would say")!!
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seriously, I laugh at how I have fixated on nipples in a bizarre way...I never knew I could be so interested in the day-to-day goings on with them...my husband had to give me 'pep-talks' when we go out, I am always looking in my shirt and putting my hands all over myself, I could definitley raise an eyebrow or two! ;-)
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LOL, so true (and yes, my boobs get more action -- from me, feeling myself up -- than they ever did in my previous 38 years combined)!!!
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Crunchypoodlemama my scab took a while to fall. As a matter of fact over a month. And when it finally did I had a new pink nipple . You will be alright!
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My black nipple has not changed. It will be 3 weeks tomorrow since surgery. They have me putting povidone-iodine ointment on it to see if that helps. Has anyone else tried this ointment for black nipples? It is a hard ointment to get - neither CVS or Walgreens had it, so I have enough mini packs from the PS to last maybe another week. I was also curious about the time it takes to see results, so thanks ladies for your responses about the time. Isn't it just a comfort to know you are not the only one worried about a black nipple.
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Sigh... i am 6 weeks out and I still have an unhealed spot right under my nipple There was a black patch that is almost gone but the healing is taking FOREVER. I put in a call to my PS today and hope to hear back from her tomorrow - I'm starting to wonder if she needs to take a stitch or something to close it up - it's like an openish small area that keeps producing mucous or pus. The skin isn't hot, there's no real odor so I am not very concerned about infection but still worried. The nipple itself is intact but red and sort of like it's gone into hiding. The skin does look like it's healthy, just like it's really been through something rough and is still recovering. I did think it would look a bit further along by this point.
Edited to add: I saw my PS about 2 weeks ago (so 4 weeks out) and she didn't seem concerned about that black scab - and it really has worked its way off now. She is anti peroxide or iodine - pro bacitracin. I have been alternating bacitracin/zinc and coconut-based burt's bees ointment. And it's got a bandage on it at all times except for showering.
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Kitchenwitch, Ask the ps about keeping the area dry, not moist, and open to air to rid the drainage. This may be what the nipple needs at this point, just my unprofessional opinion. Hang in there! "You're gonna make it after all"....as Mary Tyler Moore would sing and shout. LOL.
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Haha, Lisa, thanks for the cheery MTM image! Well - she told me to keep it moist and covered at all times... hopefully I can see her briefly tomorrow or at least discuss with her. I try to give it a little air dry time after showering. That does seem to help. I can't really decide what it wants. I don't think iodine or anything harsh is a good idea at the moment.
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They have me putting povidone-iodine ointment on it to see if that helps. Has anyone else tried this ointment for black nipples?
Wow, I didn't think any doctors ever recommended iodine anymore; that is good to hear, since I use iodine (in spite of its unpopularity in the current medical world). It's great not only for preventing infection, but it actually helps regenerate skin.
I use Lugol's iodine drops rather than povidone-iodine. I put a few drops on and wait for it to absorb and dry before I put a cotton t-shirt back on (I'm going braless as much as possible these days). I also put a dab of coconut oil if anything gets too dry, but not every day since I want it to breathe.
Kitchenwitch, I know doctors nowadays generally don't have patients use iodine anymore, but I'm curious what reason your doctor gave for being anti-iodine?
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CrunchyPoodleMama: She said that hydrogen peroxide killed bad and good bacteria. I don't remember her reasons for iodine. I could ask her again. I came across a study somewhere online that seemed inconclusive about whether wound healing was better with or without iodine. Since it didn't seem to come down clearly on the side of using iodine, I gave up on it.0
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Ladies: I had a black nipple for at least 4 weeks after surgery. It certainly took it's time to heal! And, I am not doing any chemo, radiation or Tamoxifen, nor do I smoke. Finally, the scab started peeling back, and I saw that wonderful, healthy skin underneath.
Right now, it's flat, though. I've been told by friends that I should get a silicone bra (I guess Target sells them for around $15.00 or so) to pull it out.
Last, but not least, will the nerves grow back? I'd like to have some sensation in that nipple!
Julie
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Nerves grow VERY slowly. That's about all I can say. It takes a full year to completely recover from surgery, so my opinion would be if the feeling is going to come back, it will probably be within that year. I had bilat mx and have feeling in the non cancer nipple but none in the cancer side. I'm thankful for what I do have and know from experience that the body makes up for the lack of sensation, movement, or senses that may not work. Hopefully some sensation will come back because I'd like to have it too!
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kitchenwitch - I was told to keep mine covered too, with this mesh material called Adaptic, feels meshy with a light petroleum jelly (?) kind of layer built in, moist but not too moist and they definitley breathe. Then I would cover then lightly with gauze to hold it in place. In the past few days I have opted to let them breathe more and one nip lost the scab and the other one is half-done with the scab. It takes time, but it sounds like you are following the Dr's orders and I'm sure everything will turn out great!!!
Happy New Year Ladies - wishing you all the best for 2011!!!
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