Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Hurleygirley: Yay!!!!!! Glad you are doing so well!
Sweetie: DONT WORRY ABOUT IT! Seriously: one of my nipples took 7 weeks till all the black fell off: they are both a-ok now. I know how you feel: it really freaked me out, but its gonna be ok
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Ladies--I have a question/s about fills...
I went to see my ps yesterday--2 wks post-op. I have one drain left and was there hoping he'd take it out, but it's still not down to 30cc, only 35, so I'm waiting til next week.
But while I was there, he asked if I wanted to start filling. I was kind of startled because I didn't think it could start so soon. Then I got creeped out looking at the port and seeing how he could find it with a magnet--ick, and I just didn't have the stomach for it. I told him I wanted to wait until after the drain came out--deal with one thing at a time.
He said he can do 50-100cc at a time, about once a week. I wondered if someone would be willing to share what it feels like to do 100 at a time--can you notice a big difference over 50? How often did you go?
He wants to go to about 500cc, and I'd like to get there by mid June. That would work out to 100 a week pretty much between now and then. Does that sound do-able, or I am rushing it, in terms of my comfort?
Thanks--I really appreciate the advice...
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Fairport: Congrats on the date! I know it is a big step. You are beautiful and I'm sure that is all someone notices and the whole reconstruction stuff is secondary. Glad to hear your infection is clearing up but sorry you are still having to go get stuff taken out. Ouch!
hurlygirly: Take your pain meds on schedule. That's important. It is eseier to prevent it than kill it when it starts up.
joansf: My PS did 100 at time on me. I know some do lesser amounts. I think with a lesser amount it will take longer to get filled but might not be as uncomfortable afterwards. I think they make their decisions based off how much room you have and how flexible your muscles are in there to start off with. I would advise taking as a minimum some Tylenol before you went. I took Darvocet and a Valium before every fill but my first one. I learned the hard way I needed something. I am a big baby though!
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PB, Glad to hear you are doing well. I am going to have to start writing surgery dates down so I can keep up. We did have a lot of flooding here, but not as bad as Nashville. We had a huge tree fall inches from our dock, but it did not damage it. It was very scary last weekend weather wise.
fairport, A date, wonderful, you are moving on with life. I am so happy for you. You will have to keep us posted on how it goes. I am enjoying the perky look too. I have bought a few new tops to show them off! LOL I'm glad your infection is getting better!
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sweetie, I had the same thing happen on one side on my incisions. I just kept it clean and it healed up in a few days. The nipple will stay black for a while, so try not to stress too much over that. It will take quite awhile to get your energy level back up. They have to put us under for so long and so deeply, that is takes time to recover and get our strength back. So hang in there!
hurleygirley, I'm so happy you are doing so well! It sounds like you are recovering well too. Stay strong and keep us posted.
joan, I can't answer the fill question, I did not have TE's, but it sounds like you are doing well.
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bcincolorado: thank you for the advice on the darvocet and the valium--
fairport--I loved your date story. It will be great to hear the next installments, which I hope you'll share.
I have another question--while you're having fills, do you/did you wear a mastectomy bra? I had just my left breast removed, so I'm very lopsided. Thanks.
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Fairport: Great to hear you went on a date. You have come a long way. That is a sure sign of feeling well and getting back on track.
Hurley girl: good to hear everything is well.
Joansf- had the one step, no fills here, but am interested in what the other girls have to say.
sweetie, will take some time to feel your energetic self again. Its alot of healing.
Happy Mother's Day to all.
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Happy Mothers Day to all. It is SNOWING here UHG!!!!!!
Joansf: BCincolorado is right: take something before a fill. I took a muscle relaxant before and a percocet after. I could only tolerate 40cc at a time and went every week . My fills were very painful for me but everyone is different. I had been working out very regularly and my pecs were very tight so I had a lot of spasms . I found it was much more comfortable to sleep upright in a recliner and my PS said "all my patients tell me that" and a lot of ladies on this board said it too.The thing is, if you space the fills out it may take longer but hurt less, and they may be able to put more in at each fill. I wore a bra 24 7 the support helped me.
Hurleygirl: hope pain remains in good control....and Sweetie that you too are feeling better every day!
Thanks everyone for the support about my "date" , will keep you posted. PB you are right: it is a sign that Im getting closer to normal: my new normal that is! I think the first big step is the hardest and it will be easier now. I had a comical thought about it today: I was so "aware" and at first self conscious that in the beginning I felt like it was a bit crowded: me, him, and my boobs! ha! It was easier as the evening progressed and i was able to not think about them in the back of my mind all the time and I think its gonna be better every time.
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Hurleygirl-so glad your doing so well! Your very fortunate to have gone through surgery so well! I had so much pain I thought it was the worst thing I ever went through! I'm still very tight, but started to do a little better. Keep resting, it sounds like your going to recover very well.
Fairport,PB,TNlady-thanks for your support and everyone here. This thread is what has helped me through a big part of this process! I love hearing your stories and seeing how well you are all doing, it gives me inspiration and hope!
Fairport-snow, really?!! 7 weeks for the nipple, wow. I think your right,sometimes these things just take time to heal and we can't force it any sooner.
TN-it does look like the hole is closing and it's not as red. I'm glad it was the weekend so it gave it time to heal before I panicked and ran to the Dr.
Happy Mother's day all! We deserve some rest!
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Happy Mother's Day everyone!
When I look at my beautiful 13 year old son, Jesse, today (who, by the way, is out cooking me my Mother's Day breakfast because my husband is out of town working) I know that I made the right decision with my MX. I know, for a lot of us, the futures with our children is the driving force in trying to eliminate any possibility of this wicked cancer ever returning.
Hurleygirly- I am SO glad that everything went so well and you are back home. Let us know how the appointment with the PS goes tomorrow.
sweetie2040- I had the same issues with the black nipples, stitches, tightness, etc. All things they don't really think to warn us about. Someone really should write a book (or at the very least a booklet) for those poor women who may not know about this site or have internet access. We should title it "Here's All the Things Your Doctor May Not Tell You, Or They Don't Have a Frickin' Clue Might Happen, All of Which Are Perfectly Normal." What do you think?
fairportlady55- A date?!? I'm married, but if I were single I think the thought of that would actually scare me more than the MX!
What a brave and huge step forward. I was wondering, too, when my life will stop centering around my breasts and it will all start to feel normal. Good luck to you!joansf- Sorry you didn't get both drains out. They are such a pain. As far as fills go, I have heard some people say they didn't bother them at all, some are in extreme pain, and everything in between. I don't know why it's different for everyone in less it has to do with how small you were to begin with and how big you are trying to go now. I did 100's cc's the first time (my PS put 100 cc's in during surgery) and the second time each a week apart. Each time, for me, the pain got steadily worse. We dropped down to 50 but it was still hurting. At this time my PS showed my DH how to do the fills at home so we tried doing 25 twice a week. Still a lot of pain. My PS has had me stop the fills for a few weeks and let everything settle down. I did ask for pain meds for the first few days after fills. She gave me Percoset. One thing I would say is as the PS is filling you as soon as you start to feel a lot of pressure tell him to stop. The pain usually doesn't start for a few hours and by then its too late. (Although I have heard of women driving back and having some taken back out!)
jessamine and GAgirl01- Just wondered how you are both feeling? Hope the healing is all going well.
magob- How is your sister doing? Has she started posting on here? You might have already said and I missed it. Hope she, and you, are doing well.
Hi to everyone else! Hope you are having a wonderful day!
Kate
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Kate- thanks so much for asking! though I don't chime in much, as you can see, I lurk and learn... I am healing really well I think... the nurses said I looked great and I'm off the pain pills and comfortable though still have drains. One comes out wed probably but the other is still really high.
I'm having emotional trouble though, that was delayed by the need to get through surgery, get better, etc.... and now it's catching up. And I feel mutilated and gross and sad. Even as lucky as I know I am to be able to get the NSM, still... my boobs. The drains don't help either. I'll be okay, but I'm sad today.
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Almost 2 weeks out, and I'm really feeling pretty good, however, I got my pathology reports back and have to have SNB and dissection of axillary lymph nodes on my right side tomorrow May 10th. I guess I have to have general anesthesia again, but they said the surgery should only take an hour or so.....hopefully it will be on an 'outpatient' surgery basis and I should be home in time to watch Dancing With the Stars...lol... anyway, just asking for prayers for clean nodes.
My dx was changed from DCIS to IDC, pooey!!! I've been really fortunate with my healing, so far so good, although 1 nipple is kind of dark, no sensation to speak of yet on either side. Original surgery was on the 27th, so I feel like I'm making pretty good progress...
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janny99 Im sorry you have to have the additional biopsy and I will be thinking of you tomorrow: good luck!
Jessamine: Im so sorry you are sad: and I totally get it. It is so wonderful to be able to have the NSM ...but I know: it still isnt the same. It takes some adjustment to be without sensation too...hey its a loss, it sucks. If it is any help at all: I will say that as time went on, and I got rid of the expanders and got the implants, it did seem better. Its not the same, but it does look a lot better. I was sad too: actually I think it was about the same time post op as you. Some days I still have some sadness, and kind of a surreal feeling like: wow how did I get here? Anyway just wanted to say I know how you feel and Im sorry and it WILL get better....
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jessamine-
All the emotions you described are exactly what I felt at almost the exact same time. I think you are so busy before the surgery that the emotions don't hit until you are looking at yourself in the mirror afterwards and everything just hits. I know it's hard now but each step truly does make you feel a little bit better and a lot less gross as you put it. Having all the drains out will be huge. I think I read that you have TE's, right? So each fill makes you feel a little more normal as well. And I know for me that being able to keep my nipples made a huge difference. I think if I couldn't have I would have felt so mutilated.
The next few months will probably be a roller coaster of emotions. I am fine one minute, depressed the next and round and round I go. It is just like grief. And no one who hasn't experienced it really gets it from what I've found. This site has truly been my salvation and has gotten me through some rough days.
I'm sure anyone on here will try to help in any way that they can if you need to talk, cry or vent. Just know that everything you are feeling is really normal. I think too often we see women depicted in movies and stuff who have BC and they are amazingly courageous 24/7. I'm sorry. That's just not real life. We all have good days and bad days. Courageous days and pity parties.
It will get better. I promise. We're all here for you.
janny99-
Sorry about the new tests. It's so hard when you think you're all done with all that. Am sending positive thoughts your way for clean nodes. Keep us posted.
Kate
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Kate - Thanks so much for asking about my sister. She has not started posting yet - stay tuned. She has a consultation appointment today. I know she made a list of questions to take with her, based on what she has been reading here.
Janny and Hurleygirl, glad to see you are both doing well. Hang in there!
Much Love, Mary
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Hey Girls, I hope everyone is having a good day. Mary gave me the idea, with her sister having a hard time with all the abbreviations, to start a "little lingo list" up top. So, I'm sure I did not get them all, just chime in with any I missed and I will add them to our list. Thanks for your help and thank you Mary for the idea!
Janny, Thinking of you!
fairport, I can't believe you had snow the other day! It has cooled off here dramatically, I am freezing at this moment, but refuse to turn the heat back on! LOL
Love and quick healing to all! Jessamine, I hope you are having a better day today!
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TNLady- Great idea for the lingo. It can be a little overwhelming at first. How about-
NSM- Nipple Saving Mastectomy
BS-Breast Surgeon
TE-Tissue Expander
Also, there is another thread that PB22 started under the Breast Reconstruction Forum-
"Where are the Skin Sparing Nipple Sparing Procedures Done?" to help other women find doctors in their area that are performing these.
I thought that was a great idea. I know, for me, it was a challenge trying to find a surgeon in AZ. So if you haven't already, and you get a chance, you might want to post the location and name of your surgeon. Thanks PB22!
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Thanks Kate! Yes, I have posted on PB's site, but I need to put a link up top, great idea!
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HI Ladies!
This is my first post! wow!.. Nice to find others with the NSM experiences!
I SO wish I had found you ladies before my surgery .... or even right after it! Would have made things much easier! I had one NSM and one SSM on March 8th.... couldn't keep the one due to my tumor location. I had large nipples so was a good candidate for a nipple sharing to the SSM side. After the black scab came off (took about 3-4 weeks) I STILL have drainage from my nipple. Skin is growing over on half of it but the other side just oozes fluid... anyone else have this problem??
Also...does anyone else have to protect the nipple from being crushed to improve circulation? I am constantly trying to figure out how to protect this nipple and not look so abnormal in clothes! LOL.. even without the wound dressing and protection.. it would still be so BIG and HARD I would have to cover it anyway!
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hmom- Welcome! I, too, found this site after surgery but am so glad I did.
I didn't have the drainage issues but I am constantly struggling to find clothes that look normal. I have my tissue expanders in, too, which makes it really a challenge. Can't find a bra (sports or otherwise) that's comfortable and can't really go without one as my nipples are constantly "on" (which is not really a good look for a 49 year old Mom with a 13 year old son). I've just been trying to find loose flowing shirts with lots of pattern! LOL! But overall, very happy with my NSM's.
Glad you posted!
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joansf: I am a uni and I have not worn a bra since the day I had my mx when I took it off at the hospital. My PS is a "keep it open" kind of person. I know some have women go home in a mx bra that holds drains, etc. Not mine.
I personally wear a little spaghetti strap cotton cami (found in the t-shirt section) at Target. I'm not very big but bought one that was 3x to get one big enough so it would be loose and easy to get on.
As far as sleep goes, sometimes I'm more comfortable in the recliner but I have slept in my bed at night the whole time. I use a pillow to (king size) and put it between my two breasts to cushion the expander and I lie on my good side. I almost always end up on my back though at some point.
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HI Kate33,
thanks for the welcome. Yes... prints, flowing and darks help as do jackets and vests!
I have a couple of things that have helped. I wear a loose1/2 slip that is nylon so my top layer doesn't cling to it. I also got a bigger stretchy (barely there brand) pull over bra and put in a "no Peek" which is a think layer of padding. I got that years ago at Macy's to use as an extra layer in my work out tops. That seems to help cover the nipple projection... maybe that would help.
Any ideas on sleeping with expanders out to the armpits!! I am narrow so I have pec pain all night on my side.. wakes me up all night hurting on both sides all over... not bad pain... just aches! On my back I have a bad habit of putting my arms over my head..ouch! The bed is NOT a place to rest my weary body! My DH hates me to sleep elsewhere but our sofa is calling my name tonite!
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hmom-
The sleeping thing is definitely a challenge. I've heard a lot of women say they have a lot less pain with the expanders if they sleep propped up. Some even sleep in recliners. It does seem to help me as well, although I do it with several pillows in bed. When I first came home from MX I slept with a pillow under each arm but now that my expanders are getting fuller that no longer seems to work. I have a big soft blanket that goes with me everywhere in the house and I end up putting that on my chest and wrapping my arms around it. Some have said they do the same with a big pillow. It sounds strange but it keeps my arms off the hard expander under the arm pit thing.
Aaah, all these little things the doctors never warned us about! Feel bad for your DH but I say sleep where ever you can get the best rest.
Kate
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hmom, Welcome. I had the black scab, but when it came off, the nipple looked pretty good. It still does not look the same as the other nipple though. It has a more mashed look to it, it does not perk up as much as the other nipple that did not scab. I find wearing a bra with a little padding helps cover up the difference, but it sounds like you are not to that point yet. Maybe someone else on here will have some tricks they can share. We are glad you found us!
I need to add SSM to our Lingo List, that does stand for skin sparing mastectomy right?
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TNLady - Thanks for the list! It's great. There is another list that might help newcomers - what would you ladies tell others to stock up on before surgery? I have read about ointment - which kind are you using? What about bandages or sterile dressing? Did your surgeons tell you what to do, or did you kind of have to figure it out once you were back home?
This is a great thread - glad to know you sweet ladies.
XO, Mary
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Glad I found this site! I just had NSM on both sides 6 days ago. One nipple is dark purple, but surgeon thinks it will still be ok, might blister and ooze. The pain is not too bad, have just been taking tylenol for the past 2 days, but the antibiotic I am on makes me nauseated. Dr. gave me some anti nasuea medicine, but it doesn't help. Taking Percocet seems to make the nasuea go away - anyone else have this problem? The drains have 20 cc for the past two days - at what point do they take them out? Feel ok, but not great. Nice to read everyone's stories.
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vmudrow, Glad you joined us. You should get your drains out when you go back for your one week visit, if that is all the drainage you are having. I was nauseated for quite awhile after surgery, I don't know if it was from the antibiotics or the anesthesia. Plus, I had constapation! Yuck! I'm glad to here you are not in much pain. Keep us posted on your progress!
MAGOB, I just used the generic of Neosporan, it was called Triple Antibiotic Cream at Walmart. My doctor did not tell me, I read it on one of the other threads here. When I went back for my PS visit, he told me to keep doing what I was doing. Go figure! It pays to educate yourself!
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Hi Ladies! I'm proud to say I've made it to 5 days post-op! Pathology report... 0/4 Nodes !!! Clear margins!! I have to say, going into the procedure, this was my biggest worry. I did have a major adjustment when I woke up; NSM wasn't possible. I knew going in this could be the case, but I hoped for the best. The mass was too large and they ended up having to take part of the areola. I felt a sense of saddness right @ the start, but hearing the words "clear margins & negative nodes" seemed to wipe away all of my grief! I have very little pain; my advice...TAKE THE DRUGS! The elephant who parked himself on my chest has finally moved; just in time to see my PS (fill-em' up Dr.) on Thursday. Honestly, I feared looking at the new me, but choose to do this the following day in the hospital with my PS. He was "very proud" of his work (he's also a very close friend! haha) he came into the room excited because he was able to give me "cute little A's"! See, I'm very petite and he didn't have much to work with anyway! Once I looked at the new me...I was truly amazed! They did a fantastic job. I didn't like not seeing nipples, but my PS assured me, he will take care of this down the road and not to worry! To me it's a great trade...you can take my ca and I'll give you nipples! Works for me!
Ladies, if I can get through this you can too! Hurleygirley, I'm thinking about you...keep your spirits up! We're here for ya!
Thanks for all of the prayers and support...
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GAgirl-thanks for sharing your story. So glad your doing so well and your very lucky you didn't have too much pain! My pain after surgery was horrible. I am sorry about the nipples but you are right about trading them for having no cancer. It is much more important to get rid of the cancer and what great news you have no nodes involved! I know everything will be fine and you are very fortunate to have a great PS. I hope you continue to heal well.
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GAgirl01-
Sorry about the nipples but glad everything else went so well. I've seen some pretty amazing photos of nipples PS's have "created", though. I don't have any sensation in mine, anyway. I can't believe you did a fill the next day!!! That is amazing! I didn't even have my TE placed until a second surgery (my PS just likes to do it this way) so I was flat as a pancake for weeks. Funny how that little bump in our chest just feels so much better.
MAGOB-
My BS sent me home with everything I needed as far as medical supplies. I did buy a special camisole in the Cancer Center that had pockets for the drains. I wore that 24. It was comfy and convenient. It was kind of expensive ($50) so if she doesn't want to do that you can just pin the drains to whatever you're wearing.
My one suggestion would be to stock up on whatever you like to drink (water, Gatorade, Vitamin Water, etc.) and hydrate, hydrate, hydrate. Pain meds make you pretty constipated which just adds to the discomfort. Hydrate before the surgery, too. Also, healthy food that doesn't need much prep. I lived on yogurt I think!
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