Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Kate33 - Thanks for the info. Now that I have found this site and the info everyone gives I'm sure you'll see my name more often.
ThisToo - I am so sorry you are going through that. Just try to keep resting and doing what the PS recommends so that you can stay as healthy as possible, and I know that is easier said then done. If you are still worried on Monday talk to him about Hyperbaric. Yes Hyperbaric is the Oxygen chamber. I was a little unsure about this at first but my PS said it was the only thing that could increse my chances. I did some research and found that all it was doing is ability to add extra oxygen into your blood. The increased oxygen could save the nipple. I dont know about Canada but my insurance paid, I went for 10 days for 2 hours a time. Let me know if you do I can give you a few tips. I had it done at the local hospital. And no problems about the ?'s I joined this site to find help and give it so anytime you need anything.
As for me feeling a little sore today after my fill up yesterday. But I put in a full days work and otherwise feeling good.
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Hello everyone - What a great message board! There is so little information on the healing process for this surgery and I am finding all of your posts quite helpful...
My question: After underogoing neoadjuvant chemo, I had a bilateral NSM (11/16/11) with single step implant reconstruction. My right side had dcis and the left was prophylactic. It is a bit over two weeks from sugery and my left nipple, although dark, seems to be scabbing over and healing nicely. The right nipple, however, looks quite bruised, with a little scabbing. My concern is that it was only half bruised (the upper portion looked pink) but now the bruising seems to be migrating into the pinker areas. I know the healing process is different for everyone but if anybody could weigh in, I would be grateful.
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inLA- Don't worry. Everything you're describing sounds very normal. Just like a couple of skinned knees might bruise, or heal, different so do our nipples. The best thing you can do is to baby them- clean them very gently when you shower, keep them dry and don't pick at the scabs. They will come off when ready and are really protecting your nipples right now. This process can sometimes take several weeks or more. I know there's a lot of anxiety during this time but hopefully soon you'll see two nice healthy pink nipples.
For those of you doing your fills- if you have discomfort for a day or so afterwards something that was recommended to me was a muscle relaxant called Flexeril. I requested a script from my PS and it worked wonderfully. I would take it a day before my fill, the day off and a day or two afterwards. With each fill your pectoral muscles are being stretched a little more and the Flexeril really helps relax it. And it didn't seem to make me groggy like the pain meds did. It's also good to do some really gentle stretches of the pecs.
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Kate33 - Thank you so much. It is really hard not to freak out with every new development so I appreciate your reply. I have made an appointment with my PS on Monday so I will see what he says. The tip about keeping them dry is really helpful. I have hot flashes from the chemo still and at night, sweat can pool around my nipples, especially my right. Once again, thanks for the great advice. I will keep my fingers crossed that everything heals well.
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My left nipple partially turned blackish purple as well about day 6. I freaked out a bit because I thought I was going to lose it, however, my PS assured my that it was just scabbing and everything would be just fine. One thing he said was that tall nipples (those with lots of projection) are more at risk of scabbing from stripping the ducts out of the inside of them. Not sure if that's true or not. By week three it was pink again, until...the edge of the car door scraped against my tissue expander and nipple as I was closing the door, and my nipple turned purple again for another week or so.
No scabbing that time, and all is well now. Hang in there InLA and ThisToo! 0 -
Kate, I tried to get on the picture forum but my computer blocked the site...I couldn't upload it. I was glad to get approved, but felt helplessly challenged when I couldn't logged onto it. I would love to see what the breast look like right after surgery. I want to be mentally prepared. I've seen pics of women after surgery when the scar pretty much healed or with TE's and expanders. I would like to see pics before it was all said and done.
I'm sad that I can't keep my nipples. Monday I meet with my breast surgeon. I'm sure we will discuss removing the infected breast and the left breast. The oncologist said last Friday keeping the left breast is an option...but, keeping the right breast is not an option.
Everything so far I wanted, I'm not getting. I wanted the fat grafting, but there's no one who's does whole breast fat grafting in my area. I wanted the nss...but can't...maybe I can keep the skin...not sure of anything right now. I am getting botox...feel good about that. At least I won't have to worry about the pain issues in regard to TE's.
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Evebarry- Did they say why you cannot have nipple sparing? Just wondering...
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Evebarry - I'm so sorry for all that you are dealing with. Having just lost my left areola that had been spared (due to path showing cancer too close), I can really relate to your sadness with not being able to keep your nipples. I just wanted to make sure you know that you can make a silicone cast of your nipples ahead of time which will let you get a silicone replica made to wear after surgery. Wisconsinrandi is making me one to wear for when I'm done with my recon (not sure I will do nipple recon).0
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Hi Girls,
Feeling better today. 1 week 3 days out. Interesting thing is that when I do have energy and try to go out, it seems to run out fast and I feel so exhausted within 30 min of being out. Put on make-up today for the first time since surgery for some self-esteem I guess. Also noticed that one the days that I am out, during the night I get pain attacks. Completely off meds, just Advil here and there as needed.
Amsk - I feel so much better without drains too! I never realized how much discomfort they were causing untill they were gone. As for tightness, my feeling alternated between being tight and then lets go for several hours and then my stiches hurt. Funny you mentioned you skipping your exersises, I did too but tried to do some yesterday and it was challenging, mostly one where you have to squeeze your shoulderblades.
UrbanMom - Thanks for sharing your experrience. It really helps. Time is what we need but I guess I get anxious during healing process and its really wonderful to hear other's experiences so thanks for reassuring.
Amom438 - Thank you for your suggestion. I tried researching on the internet and so far I cn't seem to find anyone close who does oxygen therapy. How are you handeling your fills? Do you notice the tightness right away as the ps is filling the expander?
inLA - Hi! Welcome! I am having issues with my right nipple as well, but mine is completely bruised and purple. I am not sure why it started turning purple later on but hopefully it's just going through a change and will heal soon. I wish I can help more but I am completely confused myself with this nipple healing process. How is it now?
Tigerw0man - I cringed thinking about you scraping your nipple with a car door! Wowzer, I will be more causious with doors now. Thank goodness it didn't get too damaged. Thank you so much for your imput and re-assurance. It's really calming reading your experience as well your ps's view on this because that is what is happening to my nipple.
Evebarry - I'm sorry you are not given as many options as some of us. Must be very difficult. I am freaking out about loosing mine and it really helps seeing other girl's pictures right after surgery and I am amazed at results of many who had nipple recon and the nipple looks amazing so that def helps me through. Best wishes for your next app.
Dancetrancer - WOW! i never knew about the option of making silicone cat of your own nipples. I wish I did that before this surgery. Thank you for sharing.
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Tigerw0man- I could relate to your nip scrape on the car door! With my hard, numb chest with the TE's I was forever doing stuff like that. Even though with TE's I never needed a bra I started wearing one just to protect them in case.
evebarry- Not sure if you have kids but if you're using the same computer they do you may have parental controls in place. This would prevent you from getting on the photo site since there is nudity. You may have to change your settings each time you want to go to the photos. I was also wondering why you are not able to save your nipples? Is it because you can't find someone in your area like with the fat grafting. I know the thought of traveling for these surgeries does not seem appealing but remember this is something you are going to have to live with forever. I traveled 4 hours round trip for NS and flew from AZ to FL for fat grafting. It made it more challenging but not impossible and I'm glad I did it. I have started trying to compile a datebase of PS's who are doing the fat grafting. Remind me what part of the country you live in. I may have someone on my list.
ThisToo- It can take a long time to recover from MX. My doctor said for every hour you are under anesthesia it takes your body about a month to recover. And by doing NS, and the incision under the fold of the breast, this doubled the length of time the MX took to complete. So don't be too hard on yourself. For those who are about to have surgery, or just had it, the best thing you can do is hydrate constantly and up your protein. Both of these things help you recover from the anesthesia and fatigue more quickly.
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kate33 - you always have excellent advice! Thanks so much for continuing to post and counsel those of us who are new to BC and/or less informed. Your tips and observations help and comfort so many!Evebarry - you might want to get a 2nd opinion on NSS. My dr performed it for me - even though my tumor was only 1.3 cm from the nipple. (I had read on internet that NSS was an option only if tumor was substantailly farther from nipple than that.) The fact is some BSs are simply not willing to be at all aggressive when it come to NSS. My path report came back negative for cancer in my nipple post-surgery, so I think my BS made the correct call. I am so grateful that the NSS optioin was offered to me - especially since I was resigned to NOT being a candidate. If you want you can PM me and I can give you the contact info for my BS's practice. They only do breast cancer surgery (about 4 of them, 3 of whom are women) - and seem to to be pushing the envelope with regard to NSS IMO.ThisToo - While my stamina is limited also - it is improving a little every day. I try to strike a balance between getting up and about more and more on a daily basis with not overdoing it - which will only set back the healing process. My right nipple continues to be purple - and perhaps darkening. It may be scabbing, tough for me to tell. Glad I am seeing my BS on Tuesday.ALL: I started to go back through the posts on this thread to update the list of surgeries and add Dec surgery dates - but I now see that there are several Dec surgery sites existing already. Given that we are now in Dec, I do not think that the specific date of each person's surgery in November is all that critical. In the course of posting each of us tends to note where we are in the post-op process, so I find that I never need to look back at the initial post to see what someone's surgery date was. I think it was more relevant when people were approaching their surgery date - so that others could send their good wishes and prayers. Further, number of the original posters do not seem to be posting here any more, while others -- who did not have surgery in November - are posting here. So, while I think it is great that people continue to use this thread to seek out info and support each other, I no longer think it is important to update the initial thread to add all surgery dates in that I can find. Thanks twistedsteel though for starting this threading and offering to update same.0
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ThisToo - Congrats on being off pain killers! As for the rest of what's going on, I will be putting good thoughts out there for you...In terms of my situation, thanks for asking. Thank goodness I have an appointment with my PS tomorrow. My nipple is actually starting to bleed a little bit. Wondering if that's normal. Will let you know what I find out.
tigerw0man - Thank you for your post. It was really helpful and good to hear your bruising was just that and nothing more severe.
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amsk- I'm happy to help in any way that I can because other women helped me as I was going through it all. This is definitely a "pay it forward" forum. Some day this will all be behind all of you (as much as it ever can be for any of us) and you'll probably be offering your "sage" advice, too!
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thistoo- you are up and about already? Wow; that seems quick! I kept trying to recover without pain meds after my NSBMX and was reminded time and time again that the meds serve a purpose and if you are in pain then your body has more trouble healing. So do not try to tough through the pain at this point. If you need it, take it. Just try to listen to your body and follow what it is telling you it needs. Our minds sometimes do get in the way of our healing.
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Hi girls,
Well I think something not good is going on with my left breast. Same one where nipple looks suspisious. I am going to see my ps today in a couple of hours but I am prepapred for something bad as it's been bleeding through my dressings and the whole breast looks like a giant bruise and pink/purple weird color. It also burns like nuts so I am not expecting anything good.
(For others that read this - I am 1 week 4 days out of my prophylactic bilateral nipple-sparing mastectomy with "one-step" immidiate impant reconstuction)
Kate33 - Yes, I am too very greatfu that you are sticking around here and helping us through this. Thank you.
Ginger48 - You know, I think the reason why I "push through" so much is because I have 2.5 year old twins and my husband works full-time. My mom passed away and I don't have anyone else to help me, no other family members except my in-laws who help with kids on the weekends and even though my husband is so supportive, I just can't seem to let go and just concentrate on myself so I was crazy enough to go grocery shopping 2 days post surgery and now I realize I was in a haze and people really stared at me and now I know that it's probaby because I looked so sick. I started doing kid's bath by day 5 post-op and cooking for the whole family even earlier. With struggle of course but I felt I had no choice. I do pay the price for this with nightly pain attacks. Also, my ps seems to be very conservative on pain meds, he initially wanted to discharge me with only 3 days worth of pain meds (5mg Oxy every 4 hours) and I had to beg nurses in the recovery room to call him and give me enough for at least a week. He refused to order refill on my follow-up a week later. I still think it's nuts that my surgery was at 7am and I was discharged by 3pm and sent home. I wish they kept me overnight.
inLA - How did your appointment go? Hope everything is ok.
amsk - Best wishes for your Tues app! Keep us posted on your nipple.
Ella1998 - How are you? I am keeping my fingers crossed for you and sending you hugs.
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thistoo:I am really concerned that you are doing too much from what you have described. You REALLY need to take it easy and let your body heal. I sure hope things are ok with your left breast -- but it sounds like it could be infected...? Let us know what your PS says. And please - stop cooking and doing so much. You have to let your DH take charge of both you, the kids and the housedhold at this point. (BTW - I went grocery shopping for myself - just a few things - yesterday for the first time and did a little other shopping, 13 days post-op -- and I really felt it last night!) Listen to your body..... Best - amsk0
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Thistoo- Sorry if it seems like we are nagging you but that is too much too soon. I was kept in the hospital for 3 days and I had the same surgery as you. Is there anyone that can give you some help with your twins? Giving baths and lifting them in and out of the tub is too much reaching and lifting at this stage of the game. You do not want to compromise your surgery.
My PS was not conservative with meds at all. She sent me home with a full bottle and told me to call when I needed a refill. She believes that keeping pain at bay helps the healing process. I hope you can get some relief and take it easy.
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ThisToo- Hope everything went well with your PS appointment. I have to second (third or fourth?) what everyone else is saying- you need to baby yourself more. Overdoing it can lead to fluid build up and excessive scar tissue, too, which can cause problems down the road. It can also cause your external scars to not heal smoothly. Can you call on friends, family or neighbors? I understand your husband works full time but temporarily he may have to grocery shop on the way home from work and bathe your twins himself.
As far as the lack of pain meds from your PS- this ticks me off!!! Ask him if someone sliced his penis open, removed the tissue, stitched him back up and sent him home the same day if 3 days of pain meds would be sufficient for him? Sorry, but that is just absurd! (I once spoke with a member on here who was sent home with just Advil after MX! I wanted to hunt her PS down with pitchforks!) I was concerned about taking pain meds, too, but my (very wise) Mom said, "Are you in pain? Than it's o.k. to take pain meds. When you're no longer in pain that is the time to stop." I had 4 WEEKS of pain meds- though took them mostly at night to help me sleep and prevent me from moving about too much. Here is a direct quote from the world renowned Cleveland Clinic regarding pain meds after surgery-
Why is pain control so important?
In addition to keeping you comfortable, pain control can help you recover faster and may reduce your risk of developing certain complications after surgery, such as pneumonia and blood clots. If your pain is well controlled, you will be better able to complete important tasks such as walking and deep breathing exercises.0 -
ThisToo - I will join in on the chorus of the other wise women here to repeat, please take it easy!!! I can't imagine bathing 2 year old twins - that's a strenuous job, even without surgery! There is a time for all of us to receive help - and for you, the time is now. Please don't jeopardize your health and healing to "keep things going". It is hard to ask for help sometimes, but people will step up and pitch in if asked - you might be surprised!
Kate33 - very well said, about pain meds. My BS encouraged limited use of pain meds, but I had a full prescription available if needed.
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Thistoo - PLEASE be careful, you are at such a crucial point in recovery that you owe it to yourself to just rest as much as you can. Also, as Kate mentioned the more moving around/activity you do, the more fluid that can build up. It happened to me even at 10 or more days out, it was Christams time and we all know how busy it can be. I could tell if I overdid it because my drains were producing like mad! Even after my drains were out I would wake up and I leaked out of my drain holes onto the bed (even thru the gauze I wore to protect myself). I know that is gross to say, but it's true. As soon as this happened, I went right back to the couch or bed for a few days till my body could recover. Be careful as this is the time your body needs to heal from the inside out.
As far as the pain meds go, it is NUTS to expect that 3 days worth is enough. I heard multiple times when I wanted to decrease my meds to keep going, this is how I will heal more effectivley. I needed oxy 24/7 for a week and then at night sporadically. I took Ativan every night for like a month, it helped me relax/sleep = heal.
I have two young girls and I understand how you might feel obligated to "keep on keeping on". Maybe check around to see if you can order groceries online? I know Peapod by Stop n Shop in the northeast does it. Try to keep it simple as you can, your body will thank you. Come to think of it, I have pretty much NO recollection of the first week home after bmx, I was sleepy, drugged and totally unable to drive even if I wanted to...this advice is only coming out of concern - be good to yourself!!!
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I also wanted to come on this thread to share that today is one year since my NSM. It is also my 38th birthday, yup - I have the "pleasure" of always remembering my BMX every birthday...lovely, right?!?! although I was under 6 or 7 hours of anesthesia and morphine last year so I don't remember a damn thing!...
But in all seriousness, this thread helped me tremendously as I prepared and healed after surgery. It is nice to see the thread active with women supporting eachother. I just wanted to send out a thanks for the support I received and in return I hope to be able to return some " bc-wisdom" I gathered along the way... 0 -
fire-dancer- HAPPY BIRTHDAY AND (happy?) cancerversary! That has to be the crummiest birthday gift ever! Bet you wish you could return that one! LOL! Glad you're doing so well!
I just have to pass on some good news. One of our NS girls, hurleygirly, who had her NSM around the same time as me recently had a beautiful baby girl. Since hurleygirly no longer posts on here I wanted to pass on her good news that life can move on after BC. For those of you in the midst of all this- surgery, rads, treatments- it can seem a long way off but you'll get there, too. At first BC consumed my every waking moment. Not I'm only down to several times a day but I see progress and you will too!
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yay for hurleygirly! I remember reading a post of her pregnancy, glad that she has her healthy baby girl! It IS so nice to read of the good news and positivity after BC!
yeah, Kate - I was rescheduled to my birthday after a conflict with my first surgical date. I was like "seriously? this has GOT to be an evil joke"!!! It was a bittersweet morning today, I'm a totally different person today because of last year, and I took some time to "honor" that feeling. I have felt reflective this past week - I am able to recall every emotion, action etc of the week prior to BMX, it's like a film in my head, crazy that I have recalled things that I hadn't thought about before. It's like once I had the BMX all I thought about was 'that', then TE's, fills, and the "new me", but lately I've been able to "feel" the things I felt leading up to BMX, not sure if it make sense or not but it was quite cathartic, maybe just what I needed to do...
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Kate33 - Wow. That is fantastic to hear about hurleygirly. Sometimes, this feels like a never ending road. Especially with the day to day healing, which does not seem to be happening in accordance with my clock. My husband and I wanted to start a family when all of this came up so it's doubly nice to hear about a succesful pregnancy post bc. Thanks - your post does provide hope.
ThisToo - I hope your pain management is under control. How did your PS appointment go? Sending good thoughts.
Quick update: I saw my PS yesterday because I had some blood coming out of my nipple. He was not alarmed - it was side with the cancer and went through more than the other side during surgery. He did tell me what I have already been reading on here - to put neosporin on it and keep it moist. It looks minimally better today after a day of ointment application. Fingers crossed, it continues to improve.
A big bummer that I know all of you will understand - I still have one drain hanging from my side. Still draining about 50cc daily. Hoping it will come out later this week. Thanks everyone for listening (reading). Grateful for this community. I have a wonderful support system but there is just so much that people who aren't going throught this can understand. This board makes a girl feel less alone.
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fire-dancer- What you're feeling makes total sense. It is only after doctor's appointments, surgeries, treatments, etc that we can take a breath and then start processing the emotions behind BC. Before that we're just cruising along on the adrenalin of fighting this disease. I remember at my very first BS appointment at the cancer center they sent in a social worker who explained the services they offered. I don't think I heard a word she said because my brain was filled with words like "radiation", "mastectomy", "nipple sparing" etc. I think they should revisit patients when they're "done". That's probably the time we need to unload the most. I think once you're done you kind of have to reanalyze everything and figure out how to accept this new normal. It can be daunting and that is why about 25% of cancer patients end up depressed after treatment has ended (compared with about 7% of the general population). I think it really helps to have this forum to let go of those feeling and to know they're perfectly normal, too.
inLA- So wonderful to hear you will be starting a family soon! hurleygirly's pregnancy went by without a hitch and her daughter is perfect and gorgeous! Wishing you the same happy ending! Sorry you weren't able to get rid of that dang drain. I know how disappointing that must have been. Just keep telling yourself it's serving a purpose! (I know- easier said than done.) Hope you're "untethered" soon!
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Firedancer - HAPPY BIRTHDAY - I'm sure this one will be much better than last year
Hurleygirly and I had our masectomies the same day - so good to hear she had her baby - tell her congratulations!!!!!
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Valerie- I sent your message!
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Thanks, Valerie - I am betting on this year being a heck of a lot better than last year, too! :-)
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Fire dancer- Happy Birthday!
Firedancer and Kate33 thanks for sharing your experiences. I think a pay it forward attitude is what makes this all a little easier to handle. Helping someone else get through it helps our own healing.
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Thanks, Kate33. Couple quick questions, totally unrelated to NSM: do you know if hurleygirly went on Tamoxifen? Also, is there a pregnancy post-Tamoxifen or BC thread you or anyone else can recommend? I have searched a little but have not found much so far.
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