Nipple Sparing Mastectomy with immediate reconstruction
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Hi, girls - I haven't been around much the last few days either, but tomorrow is my mastectomy... I'm filled with a sense of doom and dread... not because of the surgery itself, but because of how I will look afterward (since my reconstruction can't start for several months). I'm sure I will cry and be depressed for the next few months. *sigh* Well, decision made, now just have to plow forward..... girls, if you have a minute and feel so inclined, pray that I'll get to keep my nipple!!!
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CrunchyPoodleMama, Of COURSE I'll pray for you! I also think that sometimes... if you go into something dreading it and thinking you'll be miserable you might not be as miserable as you imagine. It would be worse, I think, if you went in thinking, Well, I won't have a breast for a while, no big deal! This way you're prepared. And just keep your eye on that prize waiting for you at the end, when you're ready for the Brava and the grafting Please keep in touch! Love and hugs!0
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CrunchyPoodleMama Oh, I am sorry that you have to go through this and for your feelings of dread. I remember that I felt the same way and just wanting it all to be done. Yes, I will pray for you!! This is a very tough thing, but you will get through it. One day at a time. Take care, God bless you!!!
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CrunchyPoodleMama- Oh sweetie, this is such a tough night. I remember tossing and turning and looking over at my DH thinking, "How the hell can he sleep right now?" But I have to say that none of it was as bad as I had made it out to be in my mind. It was tough but not unbearably tough. We are all here for you- whatever you need, whatever questions you might have. Sending good thoughts your way that the surgery goes smoothly and the NS is successful!
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CrunchyPoodleMama: Praying for you today that you'll have an uneventful surgery, quick recovery, and get to keep the nipple!0
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crunchypoodlemama - sending the most postive vibes I can for your nipple!!!!
I was wondering if anyone would share their experience as to how long it took for their nipples to be "out of the woods". I have had a "normal" recovery, nothing major as far as setbacks and I tolerate the pain well-enough, BUT...I am paranoid about the nipples, they seem to be doing ok, one is a bit red with a small crusty/scab (?) around the outside, very small (sorry for the gross description...) and the other is red with what I am hoping will NOT turn to blistered skin, but has a couple itty bitty red bumps. I am 10 days out, two drains down, two to go. I shoud get my final path report hopefully by friday, then I might be able to rest a bit easier...also, I've been very gentle on them re: washing, I don't want to strip moisture from them as I hear that is the key to healthy healing, any advice? I'll read back as I am sure I am bringing up a discussion that has been around before, but thanks for any input!
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I think you're about out of the woods unless an infection develops.
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crunchy: I am praying for good drugs, speedy recovery, and may you be NED for many years to come!
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sorry, an update w/another question, I just went to change and my nipple bled thru the gauze, otherwise it looks the same and the PS office says that it was probably just blood under the skin that needed to release, gosh, I need this paranoia to stop...sorry about the extra post about my nip!
thanks for your response, angelisa, I hope I am still headed that way!
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Girls, I'm overwhelmed! THANK YOU for your prayers and good thoughts -- THE NIPPLE WAS SAVED!!!!!!!!!!!!! Initial path = B9!!! Praying the final pathology stays that way!!!
Girls, my mastectomy was at 12:00 and I'm already home from the hospital! (For me, that's a good thing... I was dreading the overnight hospital stay almost as much as the surgery itself!)
I checked in at 10:00, they had me prepped and in the O.R. by a quarter to 12, surgery at 12, I was waking up (groggy) by 1:30, and by 3:00 a volunteer was in my room to wheel me to my parents car! Talk about drive-by mastectomy, BUT, I much preferred it that way... I didn't have any complications, only one side was done, no nodes were taken, no reconstruction whatsoever yet, and all went swimmingly well.
Best of all - the preliminary biopsy of the cells under the nipple came back BENIGN so (at least for now) I still have my nipple! HOORAYYYYYY!!!!!!!!!! I was so happy when he told me that I nearly cried.
I have one drain, and the whole emptying/measuring thing isn't as bad so far as I had dreaded. I took an extra-good shower this morning though in case I am just not up for a full shower in the morning... hehe. All in all, it went as well as it could have, and although I'm still dreading what I will see when I first look under the wrap, I'm feeling okay about things for now and looking forward to moving on with reconstruction and baby-making (not necessarily in that order!).
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Oh, I forgot to mention, I haven't had the stomach to try to peek at anything yet, but my surgeon said he was going to cut in a half-moon around the nipple, not all the way around. For some reason I was thinking the entire nipple would come off during surgery then get reattached. How common is the half-moon thing? (I need to go back and reread all the old pages of this thread!)
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crunchypoodlemama - I am thrilled to hear your news, just awesome!!!!!
Be good to yourself while you heal, you certainly deserve it!!!!
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CrunchyPoodleMama - boy that was a quick surgery. Did you have an expander put in - or you are waiting on that?
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THANKS!! vmudrow, I didn't have an expander put in (I know that made a big difference in how quick everything went -- although honestly, I thought that having to do the same-day biopsy would have made things take longer than they did). I'm having delayed reconstruction (fat-grafting with the Brava system). I'm glad I won't have the pain of an expander, but the sucky part is having a saggy, empty boob for a few months... oh well, I'll deal with it!
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Very curious here and hoping someone can shed some light with the Brava system??!! What are both the advantages/disadvantages with the Brava vs. immediate reconstruction with an expander or implant? Thanks in advance for any input.
Congrats CrunchyPoodleMama and welcome to the other side!! May your recovery be swift and smooth.
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CPM so glad you are done and things have gone as well as they have. Get lots of rest and eat well!0
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CrunchyPoodleMama: I'm so glad to hear your nipple was saved, and that you got a B9 on the cells under the nipple! Good for you, and here's hoping you heal quickly.
I also have a half-moon cut under my right nipple, which is healing quickly. According to my soft-tissue surgeon (for some reason, he made the initial cut during my BMX, not my PS), he does half-moon cuts pretty routinely.
I'll be following your Brava reconstruction process with interest.
All: I'll be vacationing for one week, starting 12/17; have a Happy Holiday!
Julie
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CPM- Very happy for you that things went so well and your BS was able to save the nipple. That is wonderful news. I can't believe you're home already but you'll probably get a LOT more rest than if you were in the hospital. (Don't know how they expect anyone to get better when they insist on waking you up all the time!) Take care of yourself and drink lots and lots of fluids! This will help flush out the anesthesia and will help with the SE's of the pain meds. Sending you lots of gentle (((hugs))).
LISAMG- From what I've read the advantages of the Brava/fat grafting is more women keep a lot more sensation in the breast and the breast feels more natural. The problem with implants is they don't last forever. In about 10 years down the road the implants will have to be replaced so it's another surgery with new scars, again. I wish I had learned about the fat grafting before my MX as I think I would have definitely considered it.
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I am a little over 2 weeks post op and wanted to share my experience. Reading everyone else's experiences was SO helpful for me prior to surgery.
I had the SNB with the numbing cream applied earlier. The pain was no more than the needle at the dentist's office for me.
Pre Op appts had me well prepared and informed of the process. I am extremely happy with my PS and BS and don't regret waiting a little longer to get this team.
I had my surgery at 1pm on a Tuesday and was home by dinner the next day. I have to admit..the pain was WAY more intense than I had anticipated. I was surprised the things that were painful and difficult (like wiping after going to the bathroom!) I was actually worried that I was going to end up the show "Intervention" because I needed to refill my Percocet prescription after one week! My PS was very sweet and said everyone heals differently and that I shouldn't be so hard on myself. Getting the first 2 out of 4 drains out helped (didn't realize those would be so irritating and painful under the arms).
Turned out I had to go through an involuntary detox 3 days ago! My husband left for work, and my mom wasn't scheduled to come over until that afternoon. My DH had put the childproof cap back on the Percocet and I couldn't open the darn bottle! It hurt to push the cap down plus I was too worried that I might pull my stitches inside on my pec muscle/alloderm! So I decided to take an Advil and see if I could cope. And surprise, surprise.. I did fine. I actually felt more like my old self and that I had a little more energy. I still take just one pill at night because I am still uncomfortable and want to get a good sleep. I get my last 2 drains out today (YEAH!) and am hoping that will help with the sleep discomfort a litttle bit.
So far my nipples appear to be surviving just fine!! They both scabbed over a bit, but one side has already fallen off and revealed a lovely healthy pink nipple.
I've been slathering ex virgin coconut oil on my breasts/nipples (avoiding the scar site ~ still bandaged with a steri strip) to keep the area moist.My PS only filled my TE's with 100cc each. He said I'm "thin skinned" so he wanted to not stretch it too much and give it time to heal. I go in to get my last drains removed this afternoon, so I will find out when my first fill will be. I'm pretty flat but everyone thinks I look surprisingly good and that I look like I have a "runner's" chest (if only I had a "runner's" legs and bottom to match!)
I don't have to return to work until January. I have been doing light walking and hope to increase the exercise once my drains are gone today. I am just starting to feel like I might actually be able to enjoy the holidays and feel like I had a bit of a "vacation" before I go back to work. The first two weeks were mostly focused on managing pain, resting and recovering. There was no lazy days of reading and watching tv like I imagined...I was just too tired, sore and most waking moments were spent continuing my BC research.
I am currently awaiting my oncotype score results. My "chemo fate" pretty much solely will rely on that report. I absolutely love my oncologist. He specializes in BC, has an amazing bedside manner and has the same philosophical view on treatment that I do. I respect his opinion, and more importantly, he respects mine.:) I really feel so fortunate that I was easily able to find such a great team of doctors in my area.
If I don't do chemo I will be starting Tamoxfin , as my onc said, "after the holidays". I told him I'll make sure to wrap the bottle and put it under the tree!
I highly recommend to anyone starting this journey to research like mad, empower yourself with knowledge, and when you are forced to ride the "breast cancer bus"...don't take a seat in the back...hop in the driver's seat and take control.
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Crunchy: glad you are doing well and recovering well.
I wanted to share with everyone that I recently had gallbladder surgery. At my post-op appointment the surgeon asked who did my reconstruction before he thought it was great job. I think doing NSM might have something to do with that since it is ME at least on the outside. It also helped me feel a bit better about not looking like my old self.
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hoping someone can shed some light with the Brava system??!! What are both the advantages/disadvantages with the Brava vs. immediate reconstruction with an expander or implant?
Kate pretty well summed it up... you preserve natural sensation better and it's using your own fat in a non-invasive way (i.e. no additional incisions). Also, it can be done even on radiated skin in a lot of cases.
The big drawback of fat grafting with Brava is that it's so relatively new (it's only been done for the last five years or so for reconstruction of entire breasts), and few doctors know how to do it yet. I suspect that will change in the next few years as it's catching on fast. BTW, it's an option that can be done later, even years later, if you have implants or no reconstruction and change your mind down the road!
Susan, thanks for sharing how things are going; I'm so sorry you've had so much pain, but it sounds like otherwise things have gone really well!
bcincolorado, you're so right about NSM allowing us to be "ME" on the outside... that's psychologically a bigger deal than I had realized.
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bcincolorado- Sorry you had to go through another surgery! Hope you're doing o.k.
Was it this thread that something described NSM as "It's still me- just the stuffings been changed!" Thought it was a great way of looking at it.
CPM- Great to know that the Brava/fat grafting can be done at a later date. Definitely something I would consider down the road. Lucky you for being able to get it now!
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Kate, it's funny you mentioned that "stuffing" quote -- after I read that here, I have used that as a description several times. Whoever said that, thanks for that; it's brilliant! (and yes, I can only imagine how far advanced fat grafting will be even in a year or two... it's definitely not just for the "newly mastectomied"! I remember reading someone's account of having had lost sensation with her mx many years before, then removed her implants and did the Brava with fat grafting... she regained sensation she hadn't had in years! It's just amazing to me.)
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Intresting about the Brava! When I had my first consult with my PS, he told me that it is highly likely that not too far into the future I could be having my implants exchanged for my own fat in this procedure. ....and insurance would pay for it because it's still part of the "reconstruction". All these advances in technology and procedure are wonderful for reconstruction and I'm so happy the NSM was available during my time. ...and am excited how much better it will be for women in the future. Of course, I'd be in MORE excited if no more women ever had to go through this!
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I am a 58 year young woman who underwent breast reduction surgery in September of this year. The tissue removed was examined and I was told, 4 weeks later, that they had found DCIS measuring 3cm, nuclear grade 3. Non hormonal. I can't get a straight answer to help me decide what treatment I should choose. One doctor said Radiation. Two others say Mastectomy. I don't know, although I have asked repeatedly, if I had a single 3 cm cancerous calcification or if all the little bits they found were piled up and made a 3cm pile ( doesn't seem very scientific) or if the area of the breast tissue affected measured 3 cm across).
Because of the accidental nature of the discovery, there were no "margins" established, which is why the surgeon at Sunnybrook, Toronto's leading cancer center, is pushing for a mastectomy.
I already have the scars, so I'm fine with it, as long as I don't wake up with any surprises..He thinks that saving the nipple is too dangerous, seeing as the cancer was in the duct, or ducts.He's going to take the first three lymph nodes for testing during surgery, even though they could find no evidence of invasion. Can't he can do the same with the tissue behind the nipple? Couldn't they just scoop out the bulk of the tissue up to the chest wall and leave a little tissue behind the nipple to preserve blood supply and some sensation, then do radiation on that area only?
I'd also like to have fat grafting instead of silicone or saline with silicone.The plastic surgeon who did the original breast reduction is urging me to have an implant but they seem pretty scary from a recent ducumentary I just viewed..
I've been pretty much left on my own to research and figure this out. I'm meeting Sunnybrook's plastic surgeon on Monday to discuss my options for reconstruction. Any guidance would be much appreciated.
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TweedyBird,
I suggest visiting the DCIS boards for info and advice. I spent months there while having three lumpectomies in an attempt to avoid a mastectomy (which I had Nov. 18, with immediate DIEP reconstruction.As I understand it, DCIS standard treatment is either lumpectomy with clean margins and radiation, OR mastectomy. A very few women have to have radiation after mastectomy, but they are in the minority.
My breast surgeon does nipple-sparing mx, and he was willing to do it on me even tho I'd had all the lumpectomies and the DCIS seemed pretty widespread throughout my breast. He said the path report after surgery would determine whether I could keep it.
All turned out well. Just because it's DCIS doesn't mean the nipple has to go, at least in some doctors' opinions.
Because DCIS is noninvasive, I had only one sentinel node biopsied (or taken). Less invasive than the axillary nodes. In DCIS they are sometimes willling to be less aggressive in node biopsy.
I was going to have fat grafting for recon but decided against it. i still think it sounds like a superb technique, and fairly non-invasive.
Best of luck with your research and making a decision.
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I found this site tonight and I'm just learning how to navigate it. Thank you for your guidance. It is so great having someone point you in the right direction! The doctors sure don't.
All the best.
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Susansgarden-so glad your doing well and I can't believe your up walking and doing some much, really! I was out for weeks laying on the couch. I had extreme pain, I think more than most so when I read stories like yours I'm amazed. I'm so happy for you to have been able to do the NSM. I remember when you first started out asking questions about it. It seems you had an amazing medical team from the beginning and it seemed to make the journey a little less traumatic for you. You also have an amazing positive attitude. I too had the oncotype DX test. What a great advantage this is!! It is only like 4 years old and without out I would have automatically had chemo. With it however it was determined I didn't need chemo for my type of tumor, so a great advantage to have this specialized test. Glad your nips are looking well and your recovering nicely. Keep us posted on your progress.
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He thinks that saving the nipple is too dangerous, seeing as the cancer was in the duct, or ducts.
I'm a little confused he would think that, because MOST breast cancer is in the duct(s), but that doesn't mean the nipple can't be saved.
He's going to take the first three lymph nodes for testing during surgery, even though they could find no evidence of invasion. Can't he can do the same with the tissue behind the nipple? Couldn't they just scoop out the bulk of the tissue up to the chest wall and leave a little tissue behind the nipple to preserve blood supply and some sensation, then do radiation on that area only?
Yes, he can do the same with the tissue behind the nipple... it won't be a conclusive result until the final pathology comes back a few days later, but an initial biopsy can be done. If your surgeon doesn't routinely do that, I urge you to find one who does.
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Tweedy Bird, The right doctors are out there to help and guide you in the right direction. Finding them is another story... I wish you luck in finding the right ones! It is amazing to me how very different treatments can be for the same condition, depending on who's deciding what should be done.
For me the great thing about this board was finding out what's possible. If not for this board I would have just accepted my first BS's statement that she doesn't do nipple sparing mx and that would have been that. (Haha, she left that hospital a couple of months ago and now practices at the hospital I switched to. I wonder how long before some woman is sitting in her office with her and this same doctor is saying, "Yes, I do nipple sparing mastectomies" --- because I think she'll kind of have to keep up with the rest of the practice.)
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