Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Beckers, or whomever, my PS told me at my last appt (10 days ago) that I could shower facing forward now and let the water and soap run down my breasts (without gauze). I am so scared to try it though. I still shower with gauze and even though I let them get wetter, I'm so afraid I will get an infection from the soap and water (dumb I know). My nip (mainly my right) is slimy yellow/white (sloughing...thanks Beckers for the actual word lol) and it looks like an open wound. Should I just shower without gauze and suck it up???
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First TE fill tomorrow morning. I don't know if I'm excited or nervous. In ready to get this show on the road. My initial fill was 400cc.
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MrsCich - Well, you've likely already decided one way or the other what to do about the showering. If you're using gauze that can get wet I think that can only trap bacterial underneath and wouldn't be such a good thing. I had the same instructions even when dealing with an open wound, not to scrub or rub, but to squeeze a clean soapy washcloth above the area and let the soapy water run over the area. I wasn't to let a hard spray hit it, but to do my best to let the soapy then the rinse water just run over it from above.
I remember my first "frontal" shower. I had a major meltdown that day as I felt the shower water hit my numb chest for the first time. The lack of sensation of the water hitting me was a shock for some reason and the tears wouldn't stop flowing. So odd to take showers for your whole life and suddenly one day it feels totally different. It didn't take long to get used to it, however, and now I don't even think about it.
Good luck with your first fill tomorrow - I think you're going to do great!
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MrsCich, I still put a wash cloth diagonally over my shoulder so corner is covering nipple. My PS told me if there was puss to use peroxide followed by rinse with saline. I did that a few times after shower. I also bought all white towels and wash cloths. I use them only once and then wash with bleach. I had black nipple on right. When scab started coming off it was toward top edge. I didn't realize it wasn't connected to nipple in the center so it created a pocket for bacteria. I actually snipped the scab so I could clean it in there. I would then slather on the antibacterial ointment. Prescription and then now Bacitracin. When the infection hit it was very fast. I was on strong antibiotics for weeks. Finally better. Whew!!! I know it's hard waiting for the improvement.
Tina, it is so strange isn't it. I'm just now accepting these as my own. I can tell because before I would show anyone and now I'm becoming self conscious. ((hugs))0 -
I do wear the gauze but I don't let water just soak them and they come off as soon as I step out of the shower. I'm in his waiting room right now so I will ask him while I'm in there. Nerves are getting the best of me. Ugh
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Hi Ladies,
I'm barging in on this thread with a question on NSM. From reading the threads, I hear that there is a risk of losing the spared nibbles when doing the MX. Is there the same risk after you kept the nibbles thru the TE phase and going into the exchange surgery? In another words, is there a risk of losing your nips with the exchange surgery to implants?
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tlew- I can't speak with 100% certainty but I have never heard of this happening. The issue with the nipples not surviving after MX is maintaining the blood supply to them when removing breast tissue. Obviously our surgeons want to remove as much breast tissue as possible while not compromising this blood supply. Those who are large breasted this becomes even more challenging. Another factor is how aggressive the surgeon is when it comes to coring out the inside of the nipple for testing. There is also the risk of infection particularly for those whose surgeons use incisions directly around the areolar. The single biggest factor when it comes to nipple necrosis is reported to be the level of the surgeon's experience but there are other factors that come into play, too. But, like I said, I have never heard of anyone losing nipples through exchange or even revision surgery.
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Thanks Kate for the info! I am 2 weeks post exchange. I did my my NSM back in June. I am still on the gauze and bacitracin routine as the nipple is kind of dry with I dont put anything on. I just wondered about the timeline of developing necrosis, infections, etc...
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Well, I did get my first fill. 50cc in each and it was not pleasant at all. I didn't watch but it sure felt like a knitting needle was being inserted into my ports.
It seems I will need another surgery as well. 😔 My nips are attached nicely but there is an area on each that is open and raw. My right is much worse than my left. My PS wants to cut out the open areas and sew them closed. I will have 5 or 6 stitches on either side he said. The nips will be a bit deformed looking but he said we can fix that later. However, I really don't care if they are deformed looking. No one sees them but me and my husband and he's already said he doesn't care what they look like. His reason for cutting out the areas is because with my chemo infusions the likelihood of them healing on their own is going to be slow. I'm good with his decision since I'm just tired of all of it
BC really is the gift that keeps on giving. I don't want to be cut on again and poked and prodded. Ugh.
Still no real side effects on day 3 post chemo. Thankfully.0 -
Hi everyone! I plan on having a NSM on Wednesday and just wanted to ask if there are any major tips and recommendations you could give...
Thank you so much,
Tina
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Tina13 - Welcome! What kind of reconstruction are you having? Flap surgery, direct to implants, or tissue expanders? Unilateral or bilateral?
Regarding the nipple sparing, I hope the surgeons have told you that if the pathologist reports any cancer cells in the tissue just behind the nipple during surgery they likely would need to remove the nipple. Also, be patient while healing and know that the nipples can get rather ugly and scary-looking before they pink back up and look healthy.
I wish you all the best on Wednesday. Keep us posted!
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Tina 13. I'm exactly one month out from mine. Only thing I can recommend is to make sure you have plenty of pillows if you plan on sleeping in your bed. You will have to be propped up. I slept in my recliner for the first 2 weeks. When I moved to the bed I had a ton behind me and some to prop my arms up. If your arms hang you lose circulation.
TAKE IT EASY!!!! Have meals already prepared or let people bring you meals. You will not be able to move your arms much if you get the tissue expanders.
Best of luck Wednesday.0 -
@TinaT - I'm thinking of bilateral with tissue expanders... It's really really scary tho, I don't know, I might change my mind last second =(
@MrsCich - Great to see you here! I mean - not great, but turns out we have another thing in common except for out young age
Thank you for the advice! I slept on the pillows after my lumpectomy and it sucked =( I might consider buying a recliner! 0 -
I am 8.5 weeks post surgery and the last bit of scab finally fell off of my right today!!!!!!! So happy!
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Hi Tina13,
Wednesday is right around the corner, how are ya holding up? Do you know how long you'll be in the hospital? I'm one week out today from my NSBMX. Surgery was Monday at noon, and I was discharged late Wednesday afternoon.
As far as hospital bag: slippers phone/charger, Chapstick, toothbrush/paste, hair brush/w pony ties, telescopic back scratcher. Found one at the drug store and it was soooo helpful, not only for scratching but for reaching things. Helped me slide my phone to the edge of the hospital table, reached my crackers, and even helped pull up my bed sheet. Handy little tool. The only thing I wish I'd also brought was a little hand held fan. I have one at home and it's been great when I'm hit with waves of nausea. I brought robes, and button up pajamas to the hospital but found the hospital gown comfy enough, and easy for the nurses to access everything thought the top snaps. I actually only changed into my pajamas for the ride home. Speaking of, many women recommend a soft pillow to place under the seatbelt for the ride home.
I've been a little all over the place this week. Quite a bit of nausea in the hospital. The big culprit is the IV pain meds, very effective for pain but everytime I'd try, and get up I was miserable with nausea. The big goal my second day was getting off the Morphine IV, and onto an oral pain pill, eating, a walking. Once, I was put on Percocet it was much better, controlled the pain and allowed me to move around. Many wise women advised me to start on stool softeners ASAP, and I couldn't agree more. All the pain meds do a number on your bowels. Talk to your doctor, and nurses with a good plan to avoid this as much as possible. I tried it all! You'll find a whole thread dedicated to the subject of constipation. Lol. Trust me I tried everything. Thats the last thing you want to worry about.
Now at home its been a matter of getting comfortable. I have a ton of soft squishy pillows in several sizes on my bed. As far as clothes, I purchased a special camisole form a cancer Ctr that has little pouches that Velcro inside to hold the drains. I was told my insurance would pay for two of them. I also heard nordstroms had something similar available. I also bought a soft cotton zip up sports bra, and then just safety pinned my drains to that. Both work fine. Anything soft, and light are good things. If you are coming home with drains another member recommended gloves, alcohol, and cotton rounds. My husband said its very helpful for milking the drains, the wet cotton rounds just slides really easily. I've also temporarily switched to light plastic cups for water, and ginger ale/7 up. My glasses were too heavy to pick up. Same for hot beverages, I use the disposable paper coffee cups. Not a fan of them buts it's only temporary. Ceramic mug filled with coffeee is heavier than you think.
I'm sorry if I've totally overwhelmed you with information. It's just all so fresh in my mind.
There is so much support on this website. I don't know what I'd do with out all these special ladies sharing all their experiences, and advice.
Please keep us all posted on how you're doing. Best wishes for a speedy recovery and please don't hesitate to reach out if you need anything at all.
Hugs,
Kellie
Sorry I I talked your0 -
Whoops, pushed send without previewing.hope it all makes sense. Still on the pain meds, and have 2 kids piling homework folders all over my bed. Lol. Wanted to apologize for talking your ear off.
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Woo Hoo Beckers! So happy for you! I'll be picking your brain down the road for sure.
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Thank you so much Kellie! You actuallly just opened a whole new world for me - I was so oblivious that I did not even think of bringing a toothbrush, robe, phone and stuff to the hospital
I guess before for my first surgery (lumpectomy) I was just in and out in a couple hours.. They say now I'd have to stay in a hospital for 2 days, so I'll have to be ready...It's a really really hard decision for me to remove my both breasts as I am kinda young (27) and haven't got kids yet, so I won't be able to breastfeed =( I didn't find a topic here on Unilateral Mx, which I was considering as well... But I think it might be more mentally challenging for me to see a "good" breast and constantly compare it to the fake one.. Ahh =(
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Tina13 - OK, I'm a little concerned. How much of a chance have you had to talk to your plastic surgeon? Sounds like there's not exactly a concrete plan in place for Wednesday, that's kind of unusual. You might also check in with the Breast Implant Sizing 101 thread. If you are having doubts about what kind of reconstruction you want you might need more time to get answers to some of your questions. Sorry to sound like a mother hen, but the day before surgery or the morning of isn't the best time to decide what kind of surgery you want. This is a big decision and one you'll live with for the rest of your life. I hope you aren't being rushed!
BTW, we bought a recliner with an electric control and it worked great. After sleeping in it for about a week I then slept on the couch with pillows and cushions. It just seemed easier to maneuver on something narrower than a bed. The back of the couch made it easier to get up.
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@TinaT I spoke with my plastic surgeon twice - once in person, and another time on the phone. I sent him the photos of one reconstruction that looked ideal to me, and he said we probably can expect to achive similar results. He showed me the tissue expanders and the implants, but we never really spoke about the size, he said we coudl decide on that down the road. As for the type of surgery, he was leaving everything up to me, saying that it's my choice and he'll perform any surgery I choose. But it's so freaking hard to decide!!!! =( I have that kind of personality that i"m asking million questions over and over and over and I guess I need reassurance, but today I emailed him asking to give me a call, but he didn't.. Neither did my oncologist or general surgeon (all Kaiser).. What can I do?.. SHould I maybe go to the hospital tomorrow and try to chase them down?..
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Definitely start on prunes or something to get you going. I took stool softeners starting the day before surgery and they didn't do anything. I didn't go for a week and it was awful. My first chemo was Friday and it too stops you up. I took Peri-Colace with stimulant and it worked. So maybe take it the day of surgery to make sure you're covered.
I had a zipper sports bra but my PS recommended I get one that clasps so you can undo the bottom one if its too tight. Plenty of button up tops too. I safety pinned my drains to my bra and shirt as well. Just don't pin it to your pants because when you have to pee and forget about your drains, yowza!
Put things in your house at waste level because you won't cant lift your arms.
Walk around your house with your elbows stuck to your side and see how much you can do. I did this little exercise with my teenage son so he could better understand what I was going through.0 -
Tina13 - Yes, if you are going the tissue expander route with implants later you do not need to decide on a final size now. Your PS likely took measurements at the appointment which he will use to order the proper size expanders for your ribcage size. Sounds like this is the current working plan?
So, I'm still a little confused about the part of your post that states that the PS is willing to do whatever type of surgery you choose and you can let him know the morning of surgery. If you are considering flap surgery like DIEP, etc. that is not something you can wait until Wednesday morning to tell him. It's a much bigger and longer surgery that sometimes requires vascular imaging ahead of time and always a lengthier hospital stay. If he is offering you direct-to-implant reconstruction you should have had that discussion about implant size so he orders the proper implants. However, I suppose he might have a good idea by the "make me look like this" pictures you sent him.
The general/breast surgeon will do the NSM the same way (I think) regardless of the reconstruction you choose. Usually, the breast surgeon steps out when the mastectomy is done and the plastic surgeon then takes over.
Typically, the oncology appointment is sometime after mastectomy surgery so that the oncologist has the complete and final pathology report to help you make decisions about your treatment plan. Have you already seen the oncologist because you had a lumpectomy?
Can you be more specific about which options you are struggling with?
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Hi tina13,
Can you have breast reconstruction without expanders? I'm wondering if that would be easier?
I hope it all goes perfectly for you,
Amy Lynn0 -
Tina13,
I would also caution you about making this decision in the next two evenings. DIEP reconstruction requires prior mapping as has been stated in these posts.
Also would like to address your comments regarding a umx. Please, please, please do not make your decision based on having different breasts if you have a umx and similar breasts if you have a bmx.
Beside breastfeeding in the future, you should consider whether removing your healthy breast is truly what you want for the long haul of your life. There are so many other considerations besides what your breasts will look like. You have the opportunity to retain sensation in a healthy breast. This may not be on your radar now, but know that despite incredible advances, even ssns mx will leave you with little to no sensation and non-response of the nipple/areola to warmth, cold, and touch.
I am speaking from experience in choosing to keep my healthy breast. My reconstructed breast from immediate DIEP is well done. It virtually matches my other breast with the exception of the scar. It feels warm to the touch and because it is fat tissue it feels like the natural tissue that it is. My right breast is my right breast. It responds to my husband's touch, to changes in temperature, etc. and it does not have the nerve regenerating issues and phantom sensations that my reconstructed breast has.
It may be that you have considered all of this, but it concerns me that you mentioned looking for info on this and not finding it.
After all is said and done, only you can decide what is right for you. Just know that removing your healthy breast is permanent. You could always have a umx and decide later to remove your other breast. But once you have removed your healthy breast, you cannot turn the clock back.
Blessings dear one.
Diana0 -
Tina13, I am sorry that you are so very young, and having to deal with all this. Equally as important my heart aches for you that you are conflicted on the details of your surgery, and Treatment plan. I myself struggled immensely with this whole process. The type of surgery, the surgical team, and so forth. I was so very frustrated that there wasn't ONE right answer. I searched out several opinions, and asked dozens of questions, sometimes over, over again, until I got to a place that made sense. It's such a personal decision, between you and your doctors. I'm so sorry these doctors are not making themselves readily available to you to discuss every single aspect of your concerns. I agree with these ladies in that you deserve the peace of mind going into which ever surgery you choose. I know it's difficult but I strongly urge you to HOUND your doctors in any way you can. Im familiar with Kaiser, I had them for years. Jumping through loop holes sucks! Call patient relations and talk to someone in charge if your doctors are not returning your calls. You deserve peace of mind honey. Please, push,push,push until you get all your questions answers, and feel good about your choices. We will all be right here cheering you on, no matter what you decide.
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Tina13, I'm assuming your decision is BMX vs UMX, as DIEP required an OR full of surgeons for me. It was quite an effort scheduling a date in preparation and was a 12 hour surgery.
I hope you've had the opportunity to feel satisfied with your decision. I gather you are running short of time. I will say a prayer for you tonight that you will have peace of mind and no regrets. Best wishes for a speedy and smooth recovery whichever way you go.0 -
Tina13- Like others have said, your posts give me a lot of concern. I don't think you are being given all the information you need to make an informed decision and your surgery is tomorrow? Whether or not you are choosing a bilateral MX should have already been decided. Not sure you are all on the same page. If your BS and PS are doing bilateral it would double the time needed in the OR. Doing nipple sparing would add additonal time as well. My other concern is your PS saying you would discuss size down the road. The size of your desired results would determine the size and type of tissue expander placed during immediately after your MX. It doesn't sound like you have been given all your choices for reconstruction, either. There are implants, fat grafting and several different types of flap surgeries each with it's own pros and cons.
Please don't go into this blindly. This is something you have to live with for the rest of your life. And for you, being so young, that will be a really long time. I know the instinct is to want to get the cancer out as quickly as possible but it's not too late to put the brakes on things until you have been completely educated on risks, choices and you are fully prepared. If ever there was a time to educate yourself on the best way to proceed this is the time. Only you can make the best choices for yourself but you can only do this if you are given all the information available.
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Thank you so much for all you advice, ladies! Yes, all i want to do is to get the cancer out and for it to never come back! I guess this is why I am deciding on BMx.. We did speak with the surgeons about it, and that is the plan so far. And by so far I mean - almost certain
I have a type A personality and I ofter freak out, I remember myself shivering at the surgeon's office the day before my lumpectomy too, asking million questions, etc...Also my oncologist and my plastic surgeon called me today, and both assured me that I can expect very good resuluts, so that gave me some piece of mind
I guess I just wanted to hear some reassurance and support with my decision, and to hear it from both doctors was rather nice. Also I have a question for all of you who underwent BMx - did you ever regret your decision? Did the results meet your expectations?
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Tina, like you I had lumpectomies (because of cancer in both breasts). I had BMX eventually because I needed rads to both sides and did not want to assume the risks, and I know I would have a hard time not knowing if it would be back and during the wait after screenings. I personally wanted them gone. Felt like they had tried to kill me
/. So I don't have regrets at all. I'm 46 though, I breast fed. Do you think you will be ok with not? Many women don't want to breast feed ever. The new breasts look better than my old ones so that is a plus. The sensation is gone. A lot of numb area. How will you react to that? A lot of women have elective surgery on breasts and lose sensation. Think positive whatever you do. I wish you the best.0 -
Tina13 - I remember my pre-surgery meeting/interview with PS. It was a rather surreal experience and at my saturation point I felt like I was floating above the room listening to this poor woman (me) talking about some bizarre surgery. Then everyone sounded like they were underwater and all I heard were garbled voices, none of it made sense. It was one of the strangest days of my whole life. I wanted desperately to tune it all out, but I was fighting to pay attention and ask my questions and push my way through it. It's a very difficult process!
You sound a bit better today now that you've touched bases and gotten some reassurance from your docs. If breast cancer navigation services are available through Kaiser you might find that helpful going forward from here if you haven't already talked with them. I'm sorry I didn't mention that sooner.
For several weeks in between sets of biopsies we thought there was only one ILC tumor and I really struggled between lumpectomy and MX. I initially was decided on lumpectomy, but then a second cancer was found in the same breast. For some reason I had no difficulty deciding on bilateral over unilateral surgery. At final pathology I had more early lobular and multiple areas of ADH all found in that same breast. Several years prior I had ADH in the opposite breast. So, I have lost no sleep over my decision to have bilateral surgery. Here's a short thread that someone started discussing unilateral vs. bilateral MX. You'll notice that opinions are all over the place. However, from reading these threads for more than a year I would say more women seem to express regret over choosing unilateral surgery. I read very few regrets from women who have chosen bilateral MX. However, I would have to assume that the average age of women here is quite a few years older than you. Each woman and each case is different and we all have different comfort levels and expectations out of the years that lie ahead of us. It's definitely a tough decision and I can't say what I would do in your particular place.
http://community.breastcancer.org/forum/91/topic/784661?page=1#post_2929007
We'll all be thinking about you tomorrow. Best of luck and I hope all goes smoothly!
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