Nipple Sparing Mastectomy with immediate reconstruction
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Hello Ladies:
I am scheduled for nipple sparring skin sparring astectomies on Thursday. The plan is for me to have expanders put in but I am very interested in your type of surgery - one step implant. I would love more information. I am a B cup now and would like to remain that way so I don't really understand the need for expansion ??? How did you get to have a one step implant, what were the criterias ? Also any help or advice about mastectomies are welcome as I am getting cold feet to closer I get to Thursday. I was dx with ILC and LCIS im May, I had a lumpectomy with clear margins and no node involvement - did chemo and now they recommend mx because of LCIS. ILC and LCIS were in the left breast so I am also considering single vs double mastectomy .... So many decisions.
Thanks,
Marie
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Hi ladies,
Kew I can't wait to see your pics - I think I remember you said that your scars are to the side of your areolas, right? Im going to log in and check out the pics. I just have to remember how to log in again. TN, thank you for the kind words and the advice. pb, it sounds like you made the right decision.
I go this friday for my bmx and I worry that they will find something in the other breast, I fear this but I know it's prob just these nerves acting up.
Marie, good luck to you on thursday! The Tissue Expanders help to expand your skin and prepare you for the implants. Some PS do this step regardless if you don't need it, like my PS - he refused to do immediate implants, he thinks it's better to go slow and start with TE's even though I am having a tissue graft to help the expansion. I already had a lumpectomy so this is a post surgery decision to do mastectomy. I hope you can make your decision and feel confident moving forward so you never have to look back.
Hope everyone is having a great 2010 so far!
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Marie, Sorry to hear that you are having to go through this. I was able to do the one step implant because my cancer was far enough away from my skin and nipple area. I thought I would need TE's, but my PS told me their could be a chance I would not need them, so we prepared with insurance for both types of procedures. That way we were covered either way. My GS did not have to take much skin and I, like you, did not want to go larger. I may even be a little smaller. I was a C before and may be closer to a B now, which is fine with me. I would talk to your doctor and see if you could be a candidate for getting the implants immediately. I would love to answer any questions you have. I am three weeks post surgery, so everything is still fresh. I know it is a individual decision, but I do not regret my decision having both breasts done. So, any questions you have, please feel free to ask.
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One drawback to having immediate implants is severe stretch marks. So, I'm sure that is why, like PS said, many doctors use the TE's and take it slow and easy. For me, not having a second surgery to place implants and not having to go through the long process of fills was worth it. I live a very long way from my doctors, almost three hours round trip. I did not have a previous lumpectomy and radiation, so my skin did not have the damage that can sometimes come with having those procedures done previously. This would make the expanders more necessary, due to the fact that your skin may be weaker in some areas. Marie we are all here for you, so please keep us posted.
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TNLady, you might want to try a different Palmer's cocoa butter cream/lotion. I used the regular one (that is a little bit greasy) until I found this other one, on top of the regular vit E one it has collagen, elastin and shea butter and is formulated specially for stretch marks. It did wonders for the brutalized skin on my breasts.
You can find it both as a massage cream and as a massage lotion (I personally use the lotion, it's less greasy)- I got it at Walmart.
http://www.superdrug.com/Problem-Skin/PALMERS-COCOA-BUTTER-STRETCH-MARK-LOTION-250ML/invt/213101
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Day, thank you for the suggestion. I will pick some up tomorrow on my outing to the doctor. How are you feeling?
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I'm feeling good overall, just a little nervous about the upcoming chemo.
I was fortunate that I didn't have any stretch marks - but I was a real freak when it comes to putting lotions on. I started with a pure lanolin one, then switched to an aloe vera and vit E one, then regular cocoa butter with vit E, then this last one. I did lots of hot water massages with the shower as soon as I was allowed to (helps a lot with blood circulation hence with healing, just be careful if you havenumb skin not to scald yourself) and massages with lotion all day long). My BF was commenting one day that I'm in the bathroom "playing with my boobs" most of the time, haha! It's amazing how the feeling comes back in my skin.
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marie111,
the TE's are not just for the skin, but for the muscle as well (the implants get under the pectoral or flap-brought in muscle). Direct one-step implants is quite painful. It has pros and cons (less surgeries but possibility of complications like capsular contraction).
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Day, LOL, I feel the same about the playing with the boob thing! I was walking on my treadmill last night massaging them. I may have some scar tissue forming in my right breast. I think our boobs are going to be our focus for a long time. I hope the Chemo goes well for you. Stay strong!
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Marie and PS73 good luck with the upcoming procedures. As TN mentioned, regarding the nipple sparing and the cancer having to be aways from the nipple, during the procedure the GS takes a frozen sample and sends it to path to make sure there are no cancer cells there. Also the procedure works best with smaller breasted woman who do not have alot of sagging skin that would not be filled with the implant. Although, I was a C and had a little sag from breastfeeding twins, I also requested a lift and therefore have the scars going down straight , where without the lift would have had them going to the side. I did look at before and after pics and have been so impressed with the outcomes of both skin sparing and the expander route. So amazing. I have a stretch mark that seems to be going away with the cocoa butter, did not get stretch marks carrying twins, may have to do with how much elastin you have to start with. I knew it would be painful, not never experienced this intensity. Get your presciptions filled ahead of time, have a back scratcher at bedside, sanitary napkins, panty liners I used on incisions and also would fold them up and use them between my skin and wherever the elastic of the surgical bra was jabbing me and extra neosporin. Have a disposable razors as when you do finally shave, you'll jam up the razor.
Day, thanks for the suggestions on the lotions. I have seen some bio oil advertisied for scars. Have you used it? I find myself constantly massaging the boobs, walking around the house with my hand up my sports bra. I have to stop that for fear my sons and their friends will catch a glimpse!
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Thank you all for your responses and good wishes. I do have a couple more questions:
How long was the recovery ? I read some post from some women and it seems I will have to be in bed and be able to do absolutely nothing, it is a little scary. I have 2 kids (ages 9 & 10) and although they are big enough they still keep me very busy. I also am not one to lie around much, I am always on the go. I exercise daily - mostly running. So how long before I can say make dinner and get back to a exercise routine ? How long before I can take care of my family again and how long before I can shower. They tell me I will be in hospital one night, does that seem reasonable ? Also I have never in my life (43 years old) taken pain meds other then tylenol and advil, I am a little worried about the pain and the meds. How long before I can take just tylenol? It seems I will be having bmx skin sparring, nipple sparring with TE.
Thanks for the advice !
Marie
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Marie, I'm at 4 weeks post op and still not preparing meals for the family. Have two 13 y.o boys. I had a family member travel here for over a week during my hospital stay and one post op who took over for me. My husband works long hours. It was the holiday break when help left and my boys were left to fend for themselves, luckily two weeks off. Today at week 4 I was able to get their breakfast together. When my husband grocery shops I request him to buy the smaller size milk and juice and just more of them so I can lift them. I also am now able to do a small batch of laundry and had my husband put the detergent into a lighter sized jar. Neither of us suspected I would be this helpless. I went to using bar soap instead of the pump in the bathroom. My husband had to learn to anticipate what I would need before he left for work, ie change out the roll of toilet paper. Meals were ordered out alot and the kids would meet the delivery at the door. If your friends want to make meals for you or your family try to arrange it so they do not come all at once. You, yourself, will not feel like eating much for a few weeks and when you do have an appetite its nice to have the meals then. Also stock ahead of the frozen meals so your husband can pop them in after work. The prepacked individual fruits were handy to place in the kids lunches the night before. It will be difficult for you to open and close dresser drawers, I had my change of sport bras and pajamas all stacked where they could be easily reached. I showed two days after with drains. It depends on what your PS directs you as some were told not to. I could not reach my hair to wash it and my husband had to and I'll tell you its not as romantic as in the movie the English Patient.
Regarding being active, the medications will make you foggy and you won't want to do anything, not even watch tv or read. Your pain level will tell you when to transition off them. Tylenol didn't work for me at first. I thought only a few days of narcotics but ended up on them over three weeks. Recently with the encouragement of reading this thread did TN get me motivated to keep trying.
Will be thinking of you on Fri, and keep warm up there in Montreal( I attended college south of you).
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Marie, I too am an exercise buff. I was able to start walking again after my second week post-op. I try to walk on the treadmill for thirty minutes in the evening to build my strength back up. I'd say it will be a while before you will be able to run after surgery, I would check with your PS before you do any kind of exercise. Mine still get uncomfortable when I walk. I wear a tight sports bra to keep them from bouncing. Everyone's pain tolerance is different, but I was able to get off the pain meds after about two weeks. Usually, I only had to take half a pill when needed. I only stayed one night in the hospital. My first night home it was very difficult to sit up in bed, so my husband had to support my back to help me sit up. I woke up from surgery with a cath in, so I did not get out of bed the first night in the hospital. The first couple of days I only got up to go to the bathroom, walk to my chair, etc. I was able to walk up and down steps with no problem. I was able to cook meals by the second week, but I could not reach up to get things out of the cabinet, or pick up heavy pans. Before surgery try to put items from your cabinet down that you will need, so you don't have to reach up for anything. Make sure you have button up clothing, you will not want to raise your arms above your head while you have the drains in. You will come home with drains and they cannot hang loose. They gave me a mastectomy bra in the hospital that had pockets to hold the drains. You can pin them to your clothing. I have seen the suggestion of using a fanny pack to carry them in. What I liked using the best was a zipper up jacket with pockets, I just put them in the pockets. I did not go out much until I got the drains out-they are a little bulky and I was self-conscious about them. They will also be stitched to your skin making them a little uncomfortable. Once you get the drains out you will have more freedom of movement. I was fortunate enough to only have to wear them for a week, but some people have to wear them for several weeks. By the third day, I was getting on the laptop, watching tv, reading, etc., which kept me from getting too stir crazy. Your children are old enough to help you with house chores, so I would talk to them before surgery about ways they can help you around the house. For example, the laundry, sweeping, dusting, etc. Something else that worked good for me was putting a TV dinner stand beside my bed. I put it in front of my night stand. It gives you extra room to put things on and you don't have to reach far at night for you water. Take chap-stick tor the hospital, your lips will be dry after surgery. I was just like you before surgery-I had the same questions on the recovery process, but the most important thing is to listen to your body and don't overdue it. Ask for help when you need it, I know that can be hard, but it is necessary. I wish you the best and please keep us posted.
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PS73-Best wishes on Friday. Please let us know how you are doing, when you are able.
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PS13 and Marie you will be in our thoughts.
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3 weeks post-op: drove for the first time yesterday, not fun. Woke up a little sore today.
Kew-my new bras came in today! They are so much more comfortable than what I have been wearing. You can hardly tell you have anything on! Ladies Kew has posted a link to the sight in a previous post above, if you are interested.
Day-I love the Palmer's lotion, PB you may want to try it too. I still like the cocoa butter, but the lotion is not greasy.
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4 weeks post op. Drove for first time yesterday. Can feel the burn with the steering wheel. Starting PT today. PS changed medication to a prescriptive anti inflammatory, Altram. He also gave me samples of a product called Kelo-Cote. It is put only on the scars and is made with a silicon dioxide that leave a very thin film on the scar. Its very expensive, will see how I like the samples before purchasing. I purchased the bras mentioned above, two of them. For me, week 4 is my turning point in this recovery process. I am still burning and pulling inside and the PS thought that I should not be in this much pain at week 4. Will see how the stretching at PT works out with the pain in the weeks to come. Will try the Palmers as I don't like the greasy nature of the cocoa butter getting all over my clothing.
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Hi---Happy New Year!!! I kind of fell off the face of the earth. I work full time and I'm working on a Masters in Social Work at night, can't remember if I mentioned that, so sometimes I disappear.
Thanks for the compliments on the pictures. I really want to post new ones because I think they look even better.
TNLady, I'm so happy you like the bras, I hope to one day have one in many colors. I work out in them and sleep in them several nights a week.
I hope everyone who is having surgery, or had it this week, heal quickly and likes the result. Remember to take is slow, it isn't a race~
Hugs--Karen
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I have/had LCIS and DCIS. I had a partial mastectomy. My oncologist suggested a nipple and skin sparing mastectomy. I am looking for information about the procedure, the risks and benefits. Is the goal to remove all of the breast tissue? What about the nodes?
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hello TN, PB22, kew...and other ladies.....just wanted to check in to see how everyone is doing...just read your posts...sounds like you are all doing well...coming along....i've finally started to feel better regarding pec pain, no longer taking meds...they still feel a little sore, but tolerable...i've been massaging 2x daily, and that really has helped. PB, TN...even though i went back to work quickly...a little under 3 wks, i still had pain, and could not have done it w/out taking meds...now i'm about 6-7wks post op, and this past week has been a turning point regarding pec pain....just wanted to let you know that it really does get better...i'm curious about the bra thing..i have not been able to wear a bra, it's just uncomfortable. it seems like most ladies here are told to wear a bra by their ps. my ps was not specific about that, he told me to do what ever is comfortable, i'm curious is it beneficial to wear a bra...is it something i should be doing?
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Kew, nice to hear from you. I still have not posted my pics yet. You have your hands full with school and working full time. I will start back to work full time in another week. I am slowly working on my masters degree in library science, so I know how time consuming work and school can be.
Ally, my PS only told me to get a sports bra that zips in the front and that was about it. I have tried different types, but it has to be something that gives me support without be too tight or too loose, works best for me. If they are too loose my breasts tend to be more sore. I was never told to wear a bra 24/7 I just assumed that was what I was supposed to do. Plus, my nipple is still healing and I am having to use sterile pads. The bras we are talking about are very nice, Kew posted a link up above. They are a sports bra, very soft and supportive. I'm go to the PS this week and I'm going to clarify how often I need to wear the bra. I'm glad to hear you are off the pain meds.
Daisy, Welcome! There is just not a lot of information out there on nipple sparing is there? I know when my doctor mentioned it to me, that was the first thing I did when I got home, search the Internet. As to your question on the breast tissue: with this procedure the doctor tries to get as much of the breast tissue that he can, without taking the skin and nipple. You will most likely still have some breast tissue in the chest wall and behind you nipple. My general surgeon told me before surgery that there was still a chance that I could lose my nipple, because he tends to be very aggressive when scraping the breast tissue behind the nipple. He also told me I may lose feeling in the nipple. I am 4 weeks post op and I am starting to get much of the feeling back. To me the benefits were keeping my own skin and nipple. My cancer was far enough away from my skin and nipple that nipple sparing was the best option for me. Well actually, my doctor gave me two options-lumpectomy or mastectomy. As far as the lymph nodes-the day of surgery my doctor had a auxiliary node biopsy done to check which lymph nodes to take. With the auxiliary node biopsy, they inject a dye into your nipple area to see what lymph nodes the cancer side drains into. After they inject the dye they will use the CT to find the area. Then they only have to remove those nodes. I had to have only four removed. You can google it to have a more technical description of this procedure. There is a small chance that the cancer can come back in your chest wall area or behind the nipple. I would ask you doctor what the statistics are on re-occurrence. The problem is, this being a fairly new procedure, there is not any long term research done yet. You will have to be diligent on your check-ups. I am very pleased with my results and I feel fortunate that I found a doctor that preforms this procedure. I'm sure you have many questions, so please post them and we will try to answer them as best as we can.
PB-Have you been driving anymore? I have not attempted it again-our roads have been iced over!
PS and Marie-I hope your surgeries went well, let us know when you are able.
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Post op week 5, I started back to driving, just to PT, haven't taken the kids anywhere as the stearing wheel is stiff. Off the pain meds except for the anti inflammatory which made a world of difference. I am doing small household tasks. While practicing the PT I felt a pop and an immediate release of my arm which must have been scar tissue breaking up where the node was taken. The next day the same thing, now I can reach into the cabinets. I still feel the rubbing of the muscle and it feels like I am wearing a bra three sizes too small. I have ordered the bras mentioned above. Feeling well enough to try the treadmill at the gym. Week 5 is the turning point in my recovery.
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PB-glad to hear you are doing so well. It feels so nice to get moving again doesen't it? You will love the bras, they are very comfortable. I go to my PS tomorrow and I think I will check on seeing a PT. I think I am getting scar tissue at the bottom of my implants. My BC side is not softening up at the bottom yet. I have been massaging them, but they are still hard. I will find out more tomorrow when I see the PS.
PS and Marie-we look forward to hearing from you and hope you are recovering well.
4 weeks post-op: Drove for the second time yesterday and it was much better than the first time. I think that driving will not be a problem now, as long as it is a short distance. No problem cooking, still have to be careful reaching on the side the lymph nodes were removed. I sometimes get a little twinge under the arm if I reach too high. I still get a little emotional at times, it bothers me not being able to do things as easily as before. I take 1/2 a Xanax at night to help with anxiety, it also helps me sleep better. I go back to work next week and I'm having a little anxiety about people looking at my new boobs. I know people are going to be curious, it is just one of those things that I dread. It's still hard to find a regular bra that fits correctly, I don't fill out the nipple area. I'm hoping when they "drop and fluff" as someone so eloquently put it, that they will fit better. Now, I just look like I have pointy boobs when I put one on. I will stick to a sports bra until they drop and fluff. I had a little scare with my incision on my BC side starting to get a little weepy, but I have been cleaning it and putting ointment on it and it is looking better. I am still wearing surgical tape over the incisions. The PS did not give me specific instructions on how to clean them, so I was doing nothing. My nipple is much improved and by next week it should be healed enough that I won't have to wear the sterile pad over it. Ladies it is just a process that takes time and patience. The important thing is taking care of ourselves and getting ourselves cancer free. I treated myself yesterday and had my hair colored/cut and my eyebrows done. It was nice to be pampered, I recommend it. I plan on getting a pedicure soon too. My thoughts go out to everyone and I hope everyone is taking care of themselves!
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Hello Ladies:
Had my nipple sparing skin sparring bmx last Thursday. Unlike some of you however I had TE put in as my PS says that is the way he prefers to work. Anyway the important part is that I get to keep my skin and nipples ! So far not to much pain at all, I only stayed in the hospital overnight. I still have 2 drains which I find very bothersome, how long before you guys had your drains taken out? I have great movement in my arms, I can't raise my arms above by head but not much loss of mobility other then that which I was very concerned about. I think that because I did not have a SNB done it has made it much easier. The worst part for me is the numbness. I expected to not have any feeling in my nipples anymore but right now both my boobs are completly numb, will this go away or will I have to adapt ?
So I am recovering well and anticipating my first fill and getting rid of the drains and hoping the numbness goes away !
Hope you are all doing well
Marie
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One more question !
One of my nipples is very dark almost black, the other looks great anyone else have this problem ?
Marie
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Marie, it sounds like you are doing great! My nipple turned black and scabbed over, I'm 4 weeks post-op and mine is almost healed now. You may want to buy some small sterile pads to put over it until it heals. I would also put some Neosporin on it after washing. The feeling comes back slowly. The only place I still feel numb is where they took my lymph nodes out. My drains came out a week after surgery, which was a great relief, but I have read some people have to wear them for several weeks. My doctor told me that my fluid had to be under 30 a drain to take them out. The most irritation I have now is from where I had the drain in. They are very itchy still. I'm so glad things went so well for you, you have been on my mind. Keep us posted on your progress and take it easy.
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TNLady: Thanks for the info. I see the PS tomorrow and I am really hoping he removes my drains but I am still getting about 40ml of fluid out of each one everyday. I can't believe you have all your feeling back, that is great and gives me hope ! Do you have feeling in your nipple too because they told me that would never come back ?
Marie
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Marie, I only have feeling in one nipple. It happens to be the one that turned black to begin with, go figure. My doctor told me there was a chance that I could still get the feeling back in the other nipple. You are close to the 30 mark, so if you can't get your drain s out tomorrow, maybe you could ask him if you could come back in when it gets under the 30. I was able to go back in a couple of days after my one week post-op visit to have mine removed. They are very helpful in keeping the swelling down, so it is a good idea not to rush it, but they are soooo annoying! Did your doctor rap you up in an ace bandage or anything? I was wrapped, and that is another reason I had to wear the drain a couple of days extra, the BC side did have a little more fluid once he took off the tight wrapping. Good luck tomorrow.
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Marie, So good to hear everything went well with your surgery. My drains were in two weeks. I had to have less than 20cc per drain. I have feeling in both my nipples but not the sensation upon touch and still some numbness on one side of each breast. I am expecting the nipple to be desensitized to some extent so anything above that is a bonus.
TN , I know what you mean with the pointed bra issue. I am waiting for my to drop and fill in or else I'd want some more fullness. I was thinking today how nice it would be to get my hair trimmed and a pedicure. Just the fact I am thinking about it is such an improvement from where I was weeks ago. Planning on going back to the gym tomorrow to use the treadmill. Still in PT and going well with range of motion.
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PB, I'm glad therapy is going well for you. I went bra shopping yesterday and I have figured out what type of regular bra we need until we drop and fluff. Basically, it is going to have to be one without any padding/form whatsoever. Sort of like a training bra for a grown-up. I had to try different sizes in each type of bra to find a good fit. The biggest problem I had with the pad-less was some were a little wrinkly in the cup area, but I finally found one that was not too bad and would not show the wrinkles through a shirt. I found one at Khols by Warner's. It is wire-free and has a little plunge, so unlike a sports bra, I can wear a v-neck. I'm sure you could find one in any department store. Go treat yourself to some pampering, you deserve it!
Went to the PS yesterday. 4-weeks post op visit- I do not have to wear the surgical tape on my incisions anymore. He says they are still a little high, so I can start massaging them down twice a day. I bought some Scar Fade at his office to start putting on my incision scars-very expensive for a little tube. Still not working out my arms in any way.
I still have a little hardness at the bottom of my implant on the BC side, but he said not to worry about that. He said everything looks good and I do not have to go back for four weeks.0
