Nipple Sparing Mastectomy with immediate reconstruction
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Hi everyone! I have been reading this thread for a long time but never posted until now. I just wanted to say that it has been so wonderful to know more of what to expect because of all of you sharing your stories! I had a NSS UMX two and a half weeks ago and I wanted to share that it has been amazing - I feel so much more "whole" because I could wake up and still mostly look like myself, aside from some bruising and weirdo TE lumpiness.
I got super lucky with my surgeon because she's really good and suggested she would be willing to try NSS even though my tumor was pretty close to the nipple - she was only able to get a 3mm margin when all was said and done (fortunately that's enough to be considered "safe")!! It looked like it might not make it for a while there, the top half of my areola and some of my nipple turned black and sad looking and stayed that way for a couple of weeks.
But just yesterday my surgical glue and scabs came off and my nipple is pink and healthy and gorgeous!! Not only that but it actually gets hard in response to cold and touch - I can't exactly feel it yet but I have a suspicion I might get some sensation back because it does feel a little raw and I can kind of sort of feel stuff if I scratch it (but I'll also admit that might be wishful thinking on my part - it's too early to tell but I'll update you guys if it ever does come back for sure)
I just wanted to share a positive story for the people who still have their surgeries coming up, it was so helpful for me to read them before my surgery. I think once it's all said and done my new boobs will be even better than my old ones! (I'm getting augmented for symmetry on the non-cancer side so they'll be a bit bigger, whee!)
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FieryRed42: So happy to hear that you're happy
. A few of us have had rough times so it's really good for others who have just had surgery or who are considering nipple-sparing to hear the great success stories too!I had a pretty rocky post-surgical road and lost about half of the nipple and some adjacent tissue on my cancer side. Mine was an oddball combo of blue dye reaction and compromised circulation from nipple-sparing. But, that was a long, slow process that became evident later. What I do distinctly remember is standing in front of the bathroom mirror in my hospital room the morning after my surgery and thinking, "Wow, this is amazing - not bad at all!" I had 350cc in my expanders and simply looked liked a slightly smaller, bruised version of myself. I had just gone through 5 core and vacuum biopsies so was pretty used to seeing bruises. My husband kept saying, "It looks like you!"
So, would I do it again knowing what I know now? Absolutely YES!!! I think it has made such a significant difference in the healing and acceptance process for me and with some "tweaking" down the road I think those problem areas are going to look great.
I hope you do get some sensation back. Apparently it does happen sometimes. I was very hopeful that the nipple on my non-cancer side would come back some because I thought I could feel a little right after surgery, but it's gone now (must have been confused nerves). I think most of us find that the nipples do respond to temperature and touch, but have no "feeling". My BS does lots of nipple-sparing surgery and she reports that about 50% of her patients report return of "sensation", but none have reported a return of any pleasurable feeling. Boo......
Thanks for sharing your success story - YAY!!!
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Met with PS yesterday who, after another TE fill, is giving my skin a two-week break. He seems pretty optomistic. Despite the longer healing time, I am happy that NS/BMX was an option and FieryRed's post and most everything I have read, indicate that the end result makes it all worth it. If someone had told me a year ago that I would be joyous for the fact that someone regained sensation in her nipples - i would think they were off their rocker. But this collective experience from women who have traveled this sometimes rocky path is HUGELY helpful.
I also met with the Oncologist for the very first time. My BMX was prophylactic and the ILC, both areas, were found when they looked at the tissue in the lab. So now, 5 years of Anastrozole - for which I feel fortunate
. Life continues to be an adventure into unchartered territory - thank goodness!!!0 -
I've been trying to catch up on the posts and something struck me as I read through them. Almost none of us were warned by our PS's about the scabbing issue post MX. And it's probably the most alarming thing when it happens. Maybe each of us should report back to our PS's that they need to discuss this with their patients? I don't think they realize how much this freaks us out. If nothing else it would help their future patients.
Also, spread the word about NS!! I am still hearing from women, post MX, who are so upset because no one ever told them this exists! (I almost didn't find out in time myself.) This KILLS me! I now tell anybody and everybody. (Can be tricky to work it into a conversation but I find a way! lol!) I'm ready to start sporting a t-shirt that says "Save the Nips". There's no reason someone who would have been a candidate should have to lose a part of their anatomy unnecessarily.
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Kate33: Hi Kate, nice to see your smiling face pop up this morning! Hope you are doing well. How are things setlling in? On the issue of tissue/nipple sensation - I believe you hoped you'd have some positive changes along those lines after your micro fat grafting (or is that only a possiblity when the procedure is used immediately after mastectomy?).
Yes, we all need to spread the word however we can. It is so sad to read comments on the picture forum from women who say, "You are so lucky...Nobody told me......I found out about nipple-sparing surgery after my mastectomy...." I just can't imagine how sad I would feel if I discovered that I was a candidate after the fact.
SAVE THE NIPS!!!
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Is there a size limit for nipple skin sparing mx? I'm a 34 d and do not mind a reduction. Can't decide whether or not to do both or one and have a reduction and lift on the healthy side.
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DebRox- The majority of surgeons will only do NS on C cup or smaller. The reason for this is the blood supply, that they have to preserve, has to travel too far in larger breasted women. But more and more doctors are attempting it on larger women. (I never understood why they all don't. What do they have to lose? If it works, WOO HOO, and if it doesn't they can remove them later. Personally, I'd ask them to risk it.) If you go to the link at the top of this thread there's a link to another thread where women are posting their surgeon's names and locations. I'm almost positive I read a post about a doctor in southern CA that was doing them on D cups.
Tina- Hi! Yep, trying to catch up with everyone! As far as return of sensation- I've had some on the skin, none on the nipple, but I think it's most successful with pure fat recon. He was proposing 2 more rounds of fat grafting and removing the implant all together. Unfortunately, my DH was DX with Parkinson's so am not able to continue with any additional surgeries right now. One round of fat grafting has definitely improved the look and feel of things, though. I am having an issue with my left implant, though. It almost feel like there's some scar tissue pulling or something. I'm meeting with a PS here in a few weeks to get it checked out. Never thought my life would revolve around boobs all the time! LOL! Hope all is well with you!
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Kate33: That's right, your husband was being diagnosed just as you were leaving for Miami, right? Sounds like a break from breast stuff is good for both of you right now. I hope he is doing OK.
So, it's always good news and bad news, isn't that the way this breast cancer thing seems to go??? Very exciting that you have more feeling in the skin. Sorry to say it might not be a dramatic improvement for you, but wonderful to think of the possiblities for the future. You're helping to pave the way!!! I guess I am too, being in the SeriScaffold clinical trial.
Yup, sometimes it feels like the "All boobs - all the time" channel !!!
Take care!
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So Kate - need more info on the scarring b/c the scarring is why I am no longer a candidate for the TE/implant route and need some type of flap surgery -- is only the skin that is ok if i can move it to some degree or is the skin that will not move but is not lumpy ok and only the skin with obvious scar tissue below it unusable? I was so shellshocked since Wednesday I did not think to ask -- I am calling on Monday to get an appointment before his prescribe six weeks are up - six weeks - really - and what am I do to during that six weeks other than cry - ugh.
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I was warned by my BS about the scabbing - it happens in 20% of cases. I was shown a slideshow with diagrams and photos of the actual surgery, stats regarding every patient he has done NS MX on, and photos of completed recons - the photos included what necrotic scabbing looks like. I was thoroughly briefed. Unfortunately I was not able to spend as much time pre-surg with my PS. He was specifically requested by my BS and I did have a brief consult with him, but we had an insurance hangup because he is out of network and I had to get special permission for insurance to allow him in the surgery. I had to do that before I could have the consult, which happened on Fri. before a Mon. BMX! While our pre-surg time together was limited, our post-BMX time together appears to have no end. I have had 6 surgeries (BMX, AND, 3 skin revisions and TE removal, TE put-back) since last Nov. - 5 have been with him! Only the AND was with BS alone. I feel like PS and I are joined at the hip!
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Just thinking of you today vhshea. Hoping that you were able to get an appointment so that the PS can talk to you about some of your concerns and set your mind at ease. Always seems to happen, especially when you face a setback, that you get home and start thinking... What if.. what about...I should have asked this....
I started to keep questions in a file on my blackberry, so when I get to the docs, I have my list handy. It also helps that I write them down; so I don't have to keep them in my head where they morph into worries.
Hang in there.
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UrbanMom - you are so sweet - I am actually trying to set up appts with some other PSs-- just to be sure I hear the same thing from them that I heard from my PS -- having a crisis of faith with my PS -- leaning strongly toward SEIP/DEIP (sort of a TRAM lite) rather than the Lat Dor flap (back) option - want to avoid involving muscle... and I may opt to remove the other breast at the time of the flap surgery - just get rid of any options for cancer to pop back up -- My bad breast had calcifications that turned into cancer (DCIS w/ invasion), and my good breast has calcifications that the biopsy says benign but I worry daily.
I will steal your idea and add questions to my smart phone... one issue with my PS, though, is that if you don't ask the question, he does not answer... and this last time, his announcement knocked me so off kilter that the questions had not even been formed in my mind.... BC - what a bitch.
But thank you sooo much for asking!!!!
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V - hey! How are you doing? I read your post above and even though I have had issues that you are well aware of, I would repeat the BMX for the very reason you stated in your post. If you look at my sig line you will see what was lurking in the "good" left breast. I honestly feel that it would only have been a matter of time and I would have had another dx of BC in that side. Also if you end up doing a different recon it might help if you do the other side for purposes of peace of mind and symmetry. And, yes it is a bitch!
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Urbanmom - so you had prophylactic BMX and they found cancer? If so that is amazing!! What made you have prophylactic masectomies - I chose to have it for ALH - there was nothing else found in pathology after surgery.
I was told about the scabbing of nipples - surgeon said she sees it alot of the time, but most end up being just fine - mine were!!
And I do have some sensation - a feeling of pressure when touched - can't say I like it.
Hugs, Valerie
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V_Artist- Sorry about the healing issues. I might be repeating myself but have you looked into fat grafting for recon? You could avoid any other surgeries/incisions. There is a member on here named tedwilliams that lives in Center Point, TX. She traveled to New Orleans to Dr. Kamron Khoobehi. He removed the fat in one grafting and banked whatever he didn't use with the first procedure. That way she hasn't had to go through the whole lipo thing with every procedure. She sounds pretty happy with the way things have turned out.
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Kate - I no longer have enough skin tissue to consider that - the flap surgery is needed to harvest skin at this point.
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V - I sent you a PM. Fellow DFW gal here. My PS does fat grafting also. Let me know if I can help you.
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V - Sorry again that you have to deal with this. Talk about being knocked off course
! I hope you find the right PS for you or at least talk it out enough to know that your original PS is doing his/her best for you. Hang in there baby!!!0 -
Vmudrow: Prophylactic mastectomy is a difficult choice. My BS told me, pre-operation, that in his experience 95% of the time the pathology report shows no cancers in the removed tissues. In my mind, that result would have been just fine. I was NOT okay with continued monitoring. My mom had died of BC at age 50 and they had found LCIS (not cancer, but a "precursor to cancer") during my lumpectomy last year. As I looked at things - what the heck were we waiting for???
So we caught my ILC at a very early stage as a result of a prophylactic nipple-sparing BMX. And now am on Anastozole to stop feeding estrogen to any possible remaining cancer cells. So, I am quite lucky. Weirdly, a couple of people said to me AFTER the BMX that they disagreed with my choice, but they didn't want to say anything beforehand. I guess in their minds, my decision was vindicated by my diagnosis!!
I am sooo glaad you had a good result from the surgery. SpecialK said her PS said that the scabbing only happens in 20% of cases. My PS had mentioned the possibility of necrosis - but I figured that was a "cover his butt" statement - kinda like the disclaimers on pharmaceutical ads. I WAS freaked by the appearance as they began healing - and never really expected damage on the OUTSIDE of my breasts. Shows how little I knew. Progress seems slow, but a mastectomy is major surgery. None of this is for the faint of heart.
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Urbanmom - your experience is very interesting - I felt worried all the time - because really how do they know what could be lurking there? I didn't want to wait until I had cancer - through genetic counseling my risk was considered 40% that I would get breast cancer at some point. Your right in saying what are we waiting for? So glad yours was caught early..
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Ok, round 2 will happen this Thursday. My implants will be replaced with TEs. Please let it go right this time! Tina, thanks again for your support. This time it will be considered an in-patient procedureand I shouldn't get a huge a** bill (lol, that's how my PS put it...)
V, I am sorry for your troubles. Things WILL look up. One day at a time, baby!
SpecialK, you've had 5 surgeries?! Did PS leave your TEs in with your skin revisions? Did more and more skin die or why did you need 3 revisions? I'm worried sick that it won't be over for me yet. ugh, I want my life back....
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miasanta2007: Oh, you must be so relieved! Did you find out if anything can be done about the first huge a** surgery bills?
I'll be sending good wishes your way this Thursday. Try not to think of it as a step back - the necrosis was your step back and this is your giant step forward!
Good luck!!!
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Had my surgery on Thursday, back home on Friday. I feel pretty good, getting a lot of rest. I didn't see my PS before I was discharged, my DH says he was told the TEs are in..I can't tell... my boobs are, well.nothing...I have a follow-up tomorrow, will get the scoop.! I've been showering and I'm relieved to have the implants out and all that ugly necrosis gone. They used to bother me alot too, always oozing and stretching, I felt like they were going to bust open at any moment! yuck! I still have that steri-tape on the incisions right now. I'm not in a rush with this reconstruction, I want to go back to work and get my life back.
When you get the TEs filled, is there pain? Any info is helpful!
Tina, I've been in contact with the financial navigator at the hospital, she's working on getting me assistance. I have to try to get help with the BS bill also, it's $2200, just got it Saturday and I've been to tired to deal with it yet...
I love you all, my sisters
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Oh Tina! Best wishes to you! I believe tomorrow is a big day for you!!
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miasanta2007: Glad you're down to healthy skin. Sounds like PS put little or no saline in your TEs. I'm sure it was hard to wake up with a flat chest, that's an experience you avoided by having the implants right away. I imagine it will be normal to go through some mental stuff just because of that.
I had lots of tightness at the beginning because I had 350cc right from the start. After that the fills were easy and painless for me (but my PS goes slowly), just some minor tightness for a week or so. The actual injections didn't bother me as that area is pretty numb. Each PS seems to have a different timetable and each patient seems to tolerate it differently. Your muscle is already stretched, but your skin is different now; hopefully you'll have minimal discomfort.
My exchange surgery is on Wednesday - I'm excited!
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I had a left mx with immediate reconstruction using Alloderm. Unfortunately the cancer was in 4 nodes so I had to have radiation after chemo. However, my ps wanted to exchange my te and put in an implant before rads so my fingers are crossed that it works out. Not alot of pain with any procedure. No one can believe that I have such great cleavage after a mx!!
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Regarding #11 ...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.)Not always. I had a NS/SS mastectomy and my incisions go out from the areola of both breast, nothing underneath.0
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DocBabs - re #11, I think it depends on the surgeon(s) - I'm scheduled for a NS/SS BMX and my BS and PS are saying one incision will be just under the breast, in the fold, so hidden. The other breast was operated on ~10 yrs. ago, lumpectomies - for that one they'll go in thru the old scar, so no new scar made.
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My incisions are under the fold of both breasts, too- nothing around the nipple. My BS said doing a NSM with the incisions this way can take twice as long as going through the center of the breast but she thinks it's worth it. (I would have to agree!) Guess we need an update on #11!
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. Hang in there!!!