Nipple Sparing Mastectomy with immediate reconstruction
Comments
-
Shawna I am also having NSM in March. My date is March 26th
0 -
Hi ladies, still thinking about how thankful I am for this forum. I have come back quite a few times to look over checklists and check out Arlene's blog. You have all been sooooo helpful!
Not sure if I mentioned that I am living alone, I have twin 11 year olds that will be with their dad most of the time over the two weeks after surgery. I am wondering how much help I should line up for when I get home. Will I need someone to stay overnight with me? How about during the day? Any estimates on how long and how much help I will need would be greatly appreciated, I am trying to put together a calendar.
0 -
MammaShells- I don't know that you will necessarily need someone staying overnight but it's definitely nicer. I didn't find the pain too bad but the fatigue was pretty bad. If nothing else it's helpful if you could arrange someone to bring meals for the first week at least. Not sure I would have had the energy to cook. A friend of mine just had surgery and some friends set up something called a Meal Train for her (mealtrain.com). It's free and you set up when you need meals, you can send out invites via email or facebook and your friends, family, neighbors, church members, etc. sign up when they can bring something. If that's not possible, try to make things ahead of time that you can just microwave. The best thing you can do is prep the house ahead of time- put everything at counter level if you can and no heavy lifing so maybe buy smaller sizes of milk, detergent, dog food, etc. Definitely load up on groceries and especially stuff to hydrate with like Vitamin water, Gatorade, etc. (Anesthesia and pain meds can really dehydrate you.) One thing I did was get a big basket that I kept on the bed next to me and it held my meds, water bottle, magazines, book, tv remote, cell phone, snacks, etc. I didn't have to reach for things as much. Anyway, it can be done alone but if at all possible I would take as much help as you can.
0 -
JennL-
I had also heard some nightmarish stories about the SNB but the Dr. I had used a little lidocane first and it wasn't bad at all. I had mine right before the looooong BMX surgery with the BS followed by the TE's getting placed by the PS so they didn't want me out for any additional time. My problem was that I started my surgery day without caffiene and by noon I had withdrawal so terrible that I was throwing up from my "first and hopefully last" migrane as they wheeled me back to the pre-surgery area. I had started out squeaky clean and by the time I had surgery I was a clammy gross mess with a bad taste in my mouth to boot. I remember thinking I'm not going to survive this surgery because I felt terrible- I wasn't even slightly nervous. Fast forward to recovery and I actually felt better after surgery. Of course it was painful, but it wasn't near what I experienced before. I salute all brave migrane sufferers! I had no idea what some people go through on a regular basis. I have since reduced my caffiene consumption (not till about 6 months later) to amounts I can disclose without being embarrased.
0 -
One thing I learned (after the fact) was if you are extremely addicted to caffeine (i.e. migraines without it) as I am they can put it in your i.v. as you're waiting for your surgery. I, unfortunately, suffered in silence until right before they were wheeling me in. (About the point I thought my head was going to explode all over the pre-op.) For those of you in the same situation I would ask your surgeon ahead of time if this is something your hospital offers, too. Wish I'd known about it in time. It would have made the whole thing a little less stressful.....and painful!
0 -
Summer2recover - That stinks about your migrane!!! What a way to go into surgery:( I'm glad you felt better after:) I'm feeling really good about being able to tolorate the pain after surgery from reading all the posts and on days I feel I can't take it I'll just remind myself that it will be better soon, everyone is so helpful on this site and I want to say THANK YOU!!!0
-
Kate33-
Would you believe that they were out of the cafffeine IV's! Before my exchange surgery I took a
half of a caffeine tablet so I would not have the same problem.
JennL-
I'm betting that you will do just fine. One of the most helpful things I read on here prior to my surgery was everyone saying that this is doable. For me the more annoying part is the length of time that I felt (sometimes still feel) tightness and discomfort and it's not even major. I wish you the best of luck and hope to hear your surgery goes really well.
0 -
Thank you Summer2recover:) Looking forward to start my healing journey!!!0
-
Hi Ladies,
I am new to the boards but have just been given a surgery date of Feb15th for a BMX, I was diagnosed with invasive lobular carcinoma of the left breast, 6mm. I have not yet confirmed the date with my surgeons as I am still considering a NSM. At my last appt with my BS I asked him what he thought about doing this procedure but he did not seem very keen and his reasoning was that often the nipples do not turn out to be symetrical. Has anyone had experience with this? He also mentioned that there was a high probability that the nipple would not survive. I did have mantle radiation in my chest area many years ago for Hodgkins Disease, but even the Doc's say my skin looks great, you would never know. Would love to hear your thoughts, advice?
Lisette
Lisette
0 -
Lisette- First, I just want to say sorry about your diagnosis. I know you're probably feeling a little overwhelmed right now trying to navigate all of this. But you're found a great place here. I found it to be an amazing place for information and support as I was going through treatment.
As far as a NSM, what I have usually found is the surgeons who are against NS are the ones who aren't trained in it in the first place. My first BS tried to talk me out of it and then I found out she wasn't trained or had ever done one. So my first question would be does he do them? If not, I would schedule a consult with one who does and make sure they are very experienced. This alone will be the greatest factor on the success of the NS. I haven't heard of anyone having problems with symmetry but am sure if that were to happen the plastic surgeon who does your reconstruction would have a solution. As far as him saying there is a high probability the nipple won't survive look at it this way- if you don't do NS your nipples definitely won't survive because they will be removed. If you try NS there is a high probability they will survive (if you have someone experienced) but if they don't they can be removed at that time and at least you tried. Even if your BS does NS I would still consider getting a second opinion. Not sure I would sign up for a surgery my surgeon wasn't behind 100%.
Current research shows that women who have NS adjust much better emotionally and psychologically to the MX than women who don't. I, for one, am glad I "fired" my first BS and found a new one who believed in NS whole heartedly. I know I feel a lot less disfigured having kept my nipples. Wishing you good luck with whatever you decide. (((hugs)))
0 -
Hi Kate,
Thank you so much for your advice (and your hugs)!!! Do you happen to know if there are different options as far as incision lines for NSM? Also I had read somewhere on here about a new type of NSM where the incision is along the breast fold, apparently they just scrape away the tissue beneath, have you heard of this and if so do you recall the name of the procedure? I would like to be as prepared as possible with my questions this time around. I am a little concerned because I am fairly sure my BS is known to be the best in my town, and I am thinking there are not too many options where I live, but I will definately do some calling around tomorrow.
Lisette
0 -
Hi Lisette
I had NSM BMX in September and I just had my TE exchange a week ago and I'm so happy I did. I was so fortunate that the surgeon who works with my oncologist specializes in NSM. This is specialized surgery and they have to have had training in this as the blood supply has to be reattached. My incision is along the top of my areola. It healed well after the BMX and I had radiation on my left breast 8 years ago. Please research the surgeons in your area and find one that is experienced. I was told that not everyone is a candidate for NSM. The location of your cancer and the size of your breasts are factors. Very large breasts are usually not good candidates because the blood supply is so far away.
Good Luck to you!
0 -
Lisette123 - Hi, my incisions were done in the IMF (inframammary fold) and are totally hidden. As already mentioned, there are factors that can play against you for NSM, but I've NEVER read of a BS balking at doing the surgery for fear the nipples won't turn out even/symmetrical.
I would strongly recommend that you do more research to see if you're a candidate and to find a BS comfortable and experienced in NSM to at least get another opinion. You might have to travel for a consult, but you'll likely be more comfortable with your decision, whatever it turns out to be.
As soon as I was able to get to the restroom after my surgery I took a peek in the mirror. I was prepared for the worst, but I looked at myself and simply saw a slightly battered and smaller version of myself (my PS filled my TEs with 350cc so I was not flat). My husband said, "Wow, they look like breasts to me!"
Part of one nipple and some adjacent skin didn't survive, but things have healed quite well and still have one or two "tweaks" in my future. However, I am amazed every time I look at myself and I'm so grateful I had the opportunity for NSM and I would do it all over again!
Whatever you decide - Best wishes to you!
0 -
Lisette- Just as there are BS's who do NS, and those who don't, there are those who do the incisions in the IF (below the breast) and those who do it straight across the breast. I have to wonder if the ones who don't do the IF, or aren't trained in this, do it the other way because it is easier just like not saving the nipples is easier. My BS told me that by doing NS and placing the incision in the IF it doubles the surgery time. I wish they would realize how much those extra hours can make a difference in the rest of our lives.
If you can't find a BS that you trust to do your NS I would expand your search. I ended up traveling 2 hours from my home to find one but it was worth it. It's definitely harder to do surgery away from home but not impossible. My last PS was in Florida while I am in Arizona. The choices we make for these surgeries are going to affect us for the rest of our lives so it was worth all the inconveniences. You don't say what type and stage of BC you have but am assuming, since you are considering NS, that yours is an early stage so you have time to research your best options. I was DX in December and did not have my MX until March because that's how long it took me to understand what my choices were, who I wanted to go to and to actually schedule it. A lot of women at first think, just get this thing out of me (!!!) but in reality you have time to make an informed decision with the early stage cancers. Don't let anyone rush you into surgery until you are completely comfortable with your decision on type of MX and your BS/PS.
0 -
Oh ladies thank you soooooo much, you have no idea how much hope you have given me, and courage to at least explore my options! I did read on here that TNlady at a list going with BS that perform NSM, but I can't seem to find it, anyone no where I can find it?
Lisette
0 -
So glad to read your recent posts. I am in the "trying to decide what I will do phase". I am considering a prophylactic BMX and am so confused about everything. My surgeon said I would be eligible for a nipple sparing/skin sparing mastectomy but I am very concerned about radiation I had 3 1/2 years ago. I am trying to find info about ladies that have had previous radiation and were able to have a successful skin sparing/nipple sparing surgery.
Donna
0 -
Lisette123 - NSM is not done in my city, but the wonderful surgeon I saw here knew I was a good candidate and urged me to see a plastic surgeon/breast surgeon team 2 hours away. I was totally overwhelmed by the idea of it at first, but I knew I had to at least go for the consults. I ended up having my surgery there. As Kate said it's a real commitment, but it was doable and well worth the trouble. Because I ran into post-MX problems I ended up making many, many trips back and forth......still worth it!
Here's a thread with names of hospitals and docs that do NSM:
http://community.breastcancer.org/forum/44/topic/750056?page=9#idx_241
Hang in there!!!
0 -
Hi Donna,
I had radiation to my left breast in 2004. In Sept 2011 I was dx with DCIS in my right breast so I chose to have a BMX in order to reduce my risk of having BC a 3rd time. I found an excellent BS who specializes in NSM and she directed me to the PS that she likes to work with and who she said has great results. I interviewed him and one other PS and I chose the PS that the BS suggested. My left breast was watched and cared for carefully and I came through the BMX, Tissue expanders and now finally the exchange and all has gone well. I was told that I had very "minimal" damage on the radiated breast and that my skin was soft and supple and therefore the BS felt I would do fine with the TE. So that's what I did. The other PS I saw told me that he wouldn't do a TE only a Latismus flap. I didn't want such an invasive surgery so I went with what the original BS and PS told me and just prayed that all would go well and it did! Good Luck to you. Take your time, do your research and ask a lot of questions. Hugs!
0 -
Oh, thanks so much.that makes me feel so much better. I have been sick thinking I might need the big time surgery...I even sent a message to the Johns Hopkins Breast Cancer Center and the reply I got was very depressing. I do not know what a breast frequently looks like after radiation, I just know mine looks like it did before my lumpectomy(I like the term, soft and supple). The BMX will be prophylactic since I had DCIS, and now have LCIS and I do not want to go through the worry again I called the breast navigator at the hospital and she said the PS I am seeing this week does not do DIEP and only does the TRAM (which I understand is no longer done at Johns Hopkins) I hope she strongly feels I am a candidate for NSM, if not, do not know what I will do.
Donna
0 -
Donna I am in the same boat as you. I finished rads a year ago and will be doing a NSBMX the end of March. My PS feels that I will do good and will keep a close watch over me. He wanted me to wait until I had been out of rads 1 year. I will be using TE's then having exchange later.
0 -
Donna - It's hard not to let the mind race ahead with "what ifs.....". Try to take it one step at a time and remember to breathe!
When you mention "big time surgery" are you referring to a Lat Flap or any type of flap surgery? Sounds like you are hoping for NSM with implant reconstruction?
Best wishes. Please keep us posted!
0 -
Sherry, good luck with your surgery, I will definitely be interested in how you are doing. If I decide to do this, will probably follow you by a couple of months.
Donna
0 -
Donna, ultimately you do have to listen to your surgeons. I hope you can locate a breast surgeon that is experienced and trained in NSM and that surgeon can tell you if you are a good candidate. My surgeons did tell me that if I got an infection or failed to heal from the BMX that I would have to have the TE removed and would probably then have to go ahead with the latismus flap procedure. So I knew that at least I did have an option if the TE didn't work.
0 -
My surgeon does do NSM and I am seeing a PS who does it with him, she does not do the DIEP flap, only the TRAM flap...I am also considering going to Johns Hopkins for a consult regarding this, cause of insurance reasons, cannot have surgery there. So many decisions. Thanks for your thoughts.
Donna
0 -
Jaysmommy that is what I was told as well. I am too thin for a DIEP so for one we are going to try to save my radiated nipple. If it fails we will deal with it. Also if my TE fails we will then go for Latisimis Dorsi flap. But PS is vey optomistic that everything will be fine.
0 -
Donna - You probably know this already because it sounds like you're doing your research......DIEP can only be done at hospitals set up to do vascular microsurgery and only PSs trained in vascular microsurgery perform it.
Good luck with your consults!
0 -
I did not know that about the microsurgery, but the plastic surgery group both trained at cancer centers and they do the surgery at my hospital. I understand they do the DIEP flap together and can take as much as 12 hours.....that really bothers me, Yes I am hoping for a NSM with immediate reconstruction.
0 -
Donna - The only reason I mentioned is because I occasionally read a post where the woman says she is being offered a TRAM flap or a LAT flap and not even aware of the DIEP. However, I believe in some cases that is because their PS is not trained in vascular microsurgery, a whole different ballgame of reconstructive surgery. I'll admit I'm not an expert on any flap surgeries so I could be way off base here. But this seems similar to women not being informed about NSM simply because their surgeon doesn't do them.
My PS has done many DIEP surgeries. I listened to the pros and cons of both DIEP and implant reconstruction and the implants simply appealed more to me.
Keep asking questions!
0 -
I had a left NS SS mastectomy with immediate DIEP reconstruction and a sentinel node biopsy (which turned into an axilla excision). I am 3 weeks + a day post op. if you want to read a positive story ... I am your gal. I am thankful to be in that place right now. I was thrilled that my BS and PS were able to save my nipple and areola. I knew going in that if the pathology on a slice of nipple/areola tissue was positive for cancer cells or if the tumor ended up encroaching more on that area then I would wake up without mine. It was worth the attempt. My PS also went lower into my bikini pubic region from the hips with my incision because 21 1/2 years ago I had a c-section with my 1st son. Another great plus.
Okay. So it would have been spectacular if there had been no cancer in my sentinel nodes but that was not the case. Due to the axilla excision of more nodes however, my PS was able to make the vascular connection of the new breast (transplanted abdominal fat tissue) at that excision site under armpit. So I have ONE breast scar total for the whole mastectomy and reconstruction. One for the excision. And the one for the DIEP abdominal procedure.
My incision on my breast is a circle to the left of my areola about the same size or slight bigger than my areola. This circle surrounds a circle of skin and tissue from my abdomen. That skin was/is used to monitor the oxygen level of the new breast and the vascular connection. There was a monitor attached at that site when I awoke to watch the oxygen. There was a blue stitch on that circle where the nurses and docs would place the Doppler to listen to the blood flow. We called it my baby and the sound of that 'heartbeat' of blood flowing strong through this transplanted tissue was music to my ears.
If the NS had not been possible then the circle would have been my 'new' areola and had it failed at any point they would have done the same post-op also. My PS surgeon explained that eventually he will remove this circle of skin as well and I will have a single line scar to the left of my areola at the 3 o'clock position.
That will take place after chemotherapy and radiation and some time to heal from those. Then we will reevaluate the reconstruction and how everything is doing. He will decide if he needs to do any tweaking ... Possibly removing tissue if there are any hardened areas or necrosis after radiation. He will do fat injections if need be. And he will do anything necessary with my right breast to achieve symmetry
I was concerned about immediate reconstruction and possibly messing it up if radiation was needed. But I figured the other outcome if it failed would be that he would replace the tissue with implants. And that would eventually work out too.
Just so you know. There is a lot of trauma to your breast in having a mastectomy and reconstruction. I had some major bruising that really became visible on about the 4th day. And was over the top of my breast and areola and nipple. And when that all started resolving and lightning (the bruise color) I noticed that my nipple was darker yet and felt like a scab. This was after I was home about 10 days post-op and I was scared that the whole nipple was dying. It was/is a scab and that scab will eventually flake/fall off but there is healthy flow underneath that. It is more discolored and extensive than I experienced with breast feeding one of my sons, but quite similar to when the nipple got sore,cracked a bit on one side, developed a scan that eventually fell off. So once I remembered that happening two decades ago and was reassured by the PA in my PS's office, I felt much better.
Well that is my good story. Since I had positive sentinel nodes and then then more nodes that were positive that put me in the 4-9 range, my cancer turned out to be more serious than if not. That stinks but is not the end of the world. And so far no signs of lymphedema. Just lots of precautions and preventative steps to hopefully keep that from occurring down the road. I will start physical therapy to get my full range of motion back. By hat should be in about a week's time. We are. Among certain that the vascular connection under the arm has enough time to heal and keep that new breast healthy and happy.
That's my story. I am thrilled. Hope everything goes well for you. Feel free to private message me too if need be. Or ask on this thread. Information and education is comforting and powerful in this journey. I love this site for giving us this vehicle to connect with and learn from survivors around the globe.
Hang in there ladies! Prayers for you all
Diana0 -
Diana, thanks so much for sharing your story. We're all in this breast cancer thing together and even though we share so many similarities, no two stories are exactly the same. But, we all crash course through it and plow through as best we can.
Sorry for your positive nodes and all that means. But, sounds like you're in great hands and that you have a great attitude.
Keep us posted!
If you're not already on the picture forum you might consider contacting one of the moderators (Lilah, etc). If you're willing to share some anonymous photos I'm sure your story will be an inspiration to many going through reconstruction.
Thanks again!
0
