Nipple Sparing Mastectomy with immediate reconstruction
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Thanks Im a RN and ofcourse I think the worse I cant go back to work till after my exchange going crazy with the fills, living on dissability feels like wellfare feel like a drug addict still take a vicodin once in awhile. I have 2 more fills than have to wait a month, then after my fills I have to sleep in a recliner I want to scream, I hate this. I broke down and had a glass of wine tonight. This cancer shit sucks. I HATE it. Tell me it getts better with the implant. I am having a lift other side with a saline implant scheduled Nov 10. I need some good news besides not being able to afford bills. I hate staying at home all I think about is cancer is this normal.Has anyone been where im going and what to expect down the exchange road, please advise.
Elizabeth
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Hey Kate! I didn't know you were having any rippling! I have to tell you though...that I have seen some of my friends whom have had augmentations. They have barely any breast tissue before getting their implants. They ALL have rippling! Only when they bend over and get into certain positions, can they see the rippling. Just wanted to let you know though because even gals that didn't have mastectomies can have the same dilemma. I will let you know if it ends up happening with me. How much rippling are you having? Is it just when you bend forward?
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gunner, I have one node taken out but I did have a funky lump there for a few weeks...it went way on its own. How many CCs are you getting filled at a time? You sound like you are having quite a hard time. I have basically 50CCs every two weeks anddidn't have any discomfort and went back to work 4 weeks after mastectomy surgery. I read about so many women who get crazy aounts of saline pumped into them with their fills. One woman had something like 200 or 300CCs filled at the time of surgery! Anywho, just wanted to see what amount your ps was filling you at every time. I may give you a different response in terms of what this experience has been like. It actually has been fine for me...no pain at all with anything and I was a small chested woman. I even like my expanders and I know most of you guys probally think I am a whacko for liking these hard balls! So far they haven't gotten in the way of my golf swing and I sleep on my stomach on them without any problems! I am thinking that my final silicone implants will only be that much better but I will post my experience of course when the time comes. Sorry to hear that you are having such a hard time. I hope it gets better for you!
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gunnar: I like can relate to the "drug addict" comment. I was so anxious to get off pain meds. I still have quite a few left after my mx. My onco scolded me one day though and said "No one ever got addicted to Darvocet" and said I need to take it to help me function and not be in pain. Now I'm off everything but over-the-counter stuff.
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gunner- I just had my exchange and I'm not even healed up yet, but I can tell you that it's just worlds better, comfort-wise, than the expanders. They feel like boobs! I can't move them around as much as the originals, true, but they aren't like the TEs either. They're like comfy pillows! I'm having a hard time getting used to the way they fall together when I lie on my side- I'm sure the old ones did it too but I got so used to the immobile hard boob that I can't remember. Anyway, that should give you some idea- more movable. Jiggly.0
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gunner- Like TNLady I, too, had a lump that did end up being an undissolved stitch. I think this is pretty common so I wouldn't worry too much about it. Definitely mention it to your PS, though, at your next fill appointment. If you're having pain with your fills you might want to see if your PS would prescribe a muscle relaxant rather than pain meds. Those worked really well for me. I didn't feel so drugged up. The pain is from your pectoral muscles being stretched as you expand so the muscle relaxants help a lot. Try to do some gentle stretches, too, several times a day and see if that helps. Hang in there. After exchange it gets so much better.
hurleygirly- The rippling is kind of visible all the time but much worse when I lean over or move my arms a certain way. It would definitely make me pretty self conscious in a swim suit. I'm going to see if it gets any better in the next few weeks and then maybe get a second opinion about fat grafting. If nothing else I'll get a mild tummy tuck out of the whole thing!
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Annie -- Day after my NSM, they looked at me and said my "flap" looked good. I asked what the flap was and they said it is the entire breast area..... they call it a flap because all the tissue below it has been removed. The blood supply is soley from the skin. They watch it closely in the first few days for any dead skin tissue, necrosis. I was fortunate in that I had no trouble from that end.
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Hi:
the lump are right behind my scar from the node removal on 6-21 feels like sharp lump i think it is scar tissue. Thanks for all your feedback i feel better i have 2 fills next month 50 cc a piece. i end up sleeping in a recliner for 4 days . I have flexerill they wipe me out what are other names of muscle relaxers. My hosp is 4 hrs away so when i go down for fills it is an all day event.
Peace and love
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Elizabeth: hang in there sweetie. I too had such a terrible time with fills: everyone is different but it sounds like you are a lot like I was. Sleeping in a recliner , using the muscle relaxants....but keep the faith it will be SO much better after the exchange!!! Dont hesitate to take the pain meds: you need them! I alternated between flexeril and vicodin....keep up with them (Im an R.N. too...we are hard on ourselves!) Thinking of you....
Kate; I am so sorry your PS was so unsympathetic and gave you the brush off. Honestly where do they get off? Somehow we arent supposed to care about the cosmetic result because its reconstruction, while someone going in for augmentation can expect to get exactly what they want?? It makes me so mad! I too have rippling, much worse in certain positions: if I stand up really straight and put my shoulders back thats the only time it really disappears. I think you are wise to give it some time.....it does change.
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fairport- Thanks for the validation. It means a lot. My rippling only completely disappears when I stand up straight, too. I told my DH if nothing else maybe my posture will improve!
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hi ladies-question- I think it's probably fine or I'd call the hospital but I feel a little worried so... does anyone know what I would want to look for as an early warning of infection/contracture? I just had exchange, my post op isn't till fri, and I have a tiny bit of pain on one side. I think it's probably the muscle, and there's no heat or fever, but should I maybe worry? Any ideas?
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Hurleygirly- Wow you actually bigger than me! I'm only filling out a B or small C. He didn't recommend going too much bigger though because it would compromise my skin. I'd be happy if it turns out close to this size though. Your PS and mine both put in a larger implant than expansion. Some PS do it the other way around. I will definitely post pics.
Kate33-I'm sorry your having problems with rippling. I see rippling now with my TE. I feel really upset when I read about how your PS talked to you at your last appointment. I wonder how they would feel if it was their body. I just think they could have a little more compassion at all we have been through and not talk to us so matter of factly. I think the patient/Dr relationship is just as important as the type of treatment your getting.
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Kate33, look up sweetcheeks66, came across her post on a forum stating the complaint that you had regarding PS attitude/outcome.
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jessamine- I think if you had an infection the skin on your breast would be pink or red and you would be running a fever. I think it would be way too early for you to develop capsular contracture. More than likely, you just overdid it in some way. A lot of women don't have much pain after exchange so it's very easy to over stretch and forget you've got stitches in there. The same thing happened to me and all I did was reach up to pull a window covering cord. The next day I had pain and a small lump which completely unhinged me. Turns out it was just an inflamed stitch from me stretching too far. I would just try babying that side until your appointment on Friday and then bring it up to the PS if it is still bothering you. If you are running a fever, or have any redness, I would call them immediately.
sweetie- My PS has never been a "warm fuzzy" kind of doctor but I guess I did expect a little more empathy seeing as how she is a woman. I agree that the dr/patient relationship is very important. Within 5 minutes of meeting my BS I knew I wanted her to be my doctor. My PS didn't resonate as much with me. She was merely someone my BS recommended. Since they had done many NSM's together I thought she was the logical choice. Now I wish maybe I had spent more time finding one I "clicked" with.
PB22- Thanks! I'll check out that thread!
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hurleygirly- I know you have been REALLY happy with your PS. Maybe you should recommend them to "sweetcheeks"? She is in the Seattle area but said she would be willing to travel. Here's the link to her thread-
http://community.breastcancer.org/forum/44/topic/757347?page=1#idx_8
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Kate33-At this point since you've had the NSM and exchange maybe it is best to look for a Dr. you click with since you will still spend a few years in follow up with the PS. I met two others before going with the one I choose. The first one I didn't like or dislike but had weird kind of neutral feeling. He had kind of a cocky attitude about things. The next guy was sweet and I did like his personality but I don't think he did as many reconstructions. It ended up the third one was the only one who did NSM so I had to go with him any way. Luckily he had a great personality and a ton of experience. I later found out he was the one who did the most reconstructions in the practice. Go with your gut, you are your own best advocate.
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thanks Kate for response- I think you're right. I think it's from driving, actually, and it's better today.0
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sweetie- Good advice. I've been driving 2 hours from my house because that was the only place I could find a BS that did NSM but no reason to keep going that far for a PS when I live right outside Phoenix.
jessamine- Glad you're feeling better today. Sorry you were worried. Remember to take it easy (I learned this the hard way)- you just had surgery, girl!!!
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hi everyone! so today was my first post on breastcancer.org, and kate33 was nice enough to tell me about this thread. so happy to find you all! i had a NS BMX on july 29th, and so far i'm doing ok! i definitely feel the cement-likeness of the TE, but i had been warned by all my girlfriends who had gone thru this before me, and all of you on this site. but i have one question that i'm almost embarrassed to ask...here we have gone thru all of this to save our lives and i'm about to ask the most cosmetic question i can think of...but here goes. SO...my nipples used to be pretty much front and center. now, having only 65cc in the TE expanders so far (so still pretty flat), my nipples are kind of pulled to the sides. like, they're off looking in different directions a little bit!! i KNOW this is so crazy of me to worry about, but i'd love to know if they tend to straighten out at all with the expansions. my PS said they are pulled that way b/c they have to take a little bit of skin when they close the incisions on both sides, but he said they may "pop out" and re-center as i expand. have any of you experienced this? and if so, do they straighten out? ok, there, i said it!!
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Hello 42,
A warm welcome to you! So glad to hear you were able to keep your nipples! As far as your question, I can only say that I think things don't ever look the same again. That having been said, there is a wide range of experiences and each person's outcome is as individual as a thumbprint. I wish you the best as you work this out with the PS. I can also say that you should NEVER feel bad about being concerned about your appearance, even though you are a BC survivor!
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Welcome 42squared. I have one that looks off to the side and I did not have expanders, I had a one step. When I studied my before and after pictures it always was like that but I never noticed because I was never studying myself and they moved to whereI wanted them in a bra. With my lift, and the nips being on high beam it became noticeable. I am more tolerable of this as this is how I was. However the PS said to wait longer, I"m 2 months out of my last revision to see how things change. The scar tissue could pull them in those directions. However with time after your expanders are out, you will need time to heal and have them settle and drop. As you fill in, they could very well move back. If they don't, and you are unhappy, the PS can easily center them in his office. I would definately wait as you may need other tweaks once you are done regarding symetry, size, pocket adjustments etc.
Look for the thread of where are the nipple sparing procedures done and post where you had yours, that is if you are satisfied with your PS.
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42squared-glad to hear you doing well after surgery. Your concerns are very normal and trust me we all have them. You are only at 65cc's so things with change a lot with expansion.I had a NSM in April and my nipples looked stretched out too. The incisions were in different locations on each side so one was pulling up and one down. I noticed as I started expanding they evened out more and also stretched out more. They look more centered now. They don't look quite like they used to but I'm still glad to have them. I lost part of one nipple and the other one is always on. Something I find hard to get used too but hopefully will be hidden in the right bra. I can say this though being able to save your nipples is a wonderful thing! It means one less surgery (if you chose to do nipple reconstruction) and more of you is still intact.
Hurleygirly- I was reading your post about cc's at expansion. My Dr put in 250 at the time of MX! I think that's why I was in SOOO much pain! After that he only put in 50cc's at a time which felt like nothing and I had no pain. I like you have grown to actually like my TE. I think they are the perfect shape and size and I also sleep on my stomach! They do feel a little tight though and I am looking forward to the squishes. Thanks for the comment on rippling too, it helps to know MX girls are not alone and augment girls get it too.
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42squared- So glad you came over! Welcome! As far as the nipple one of mine was pointing in the wrong direction after MX so when my PS placed the TE (which was done in a different surgery) she put a few stitches in to straighten it. So I know it can be done. When you are all done with your expansions, if this is still a problem, I would definitely talk to your PS about it. They should be able to fix it when they do the exchange. You should never feel embarrassed to be concerned about how you look. Women who have augmentation do, so why shouldn't we? If anything, we deserve to more! Again, welcome!
Totally off subject, girls, but whippetmom posted some info on a doctor in Miami that is creating new breasts completely with fat injections! No implants, no DIEP or other surgeries! It's kind of new, so I wouldn't try it now, but down the road I may think about replacing the implants if it proves successful as I'm just not that crazy about them. Here's the link if anyone is curious-
http://www.miamibreastcenter.com/breast-reconstruction/after-mastectomy-miami.html
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Hello everyone, nice to keep up. Is this the same fat grafting that they invented at the University of Tokyo, Japan about 7 years ago? I have heard it's been done here in the U.S. for a while, but in very small numbers for only the very wealthy as it is costly and was not covered by insurance.
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whitedove, PB22, sweetie2040 and kate33: thank you all very much for sharing your insights and personal experiences. it's good to know that things will shift and reshape over time, so i will sit tight until a while after my exchange. or at least try to.
also, thanks for letting me openly care about how they look!! i guess in a way one could say we should care even MORE than those who do voluntary augmentations b/c we certainly didn't ask for this!! right?? have a great day!0 -
whitedove- Their website says it is covered by insurance so maybe that's a new thing. They can also use it for revisions by removing the implants and then using their procedure. Initially, though, I think they can only get you to a small B cup. They said each additional procedure would increase your size. Just thought it was kind of interesting.
42squared- I would definitely talk to your PS about it, though, as there may be something they can do to fix it during your exchange rather than after.
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42: welcome! So happy you could keep your nipples: its a beautiful thing. Not much to add to the wise words of these great ladies, but will just reinforce the point many have made: things change a lot. So what they look like now is not likly to be what you end up with. Also: I personally dont think ANYTHING about what we want is vanity! We have every right to want and hope for being resotred to as close to "normal" (whatever that is!). One things for sure: I never looked so carefully and critically at my boobs before all this. Actually I dont think I was symmetrical before...but notice every little thing now!
Kate: you know, I never warmed up to my PS either.He was always kind of matter of fact and cocky too. and not really a listener. I think its kind of hard because NSM is still so new and unavailable in a lot of places that sometimes to get the experience you have to sacrifice the good relationship (or be willing to travel far) too bad though. It not like we chose this. As a nurse, I will say though its always been my observation that surgeons as a rule tend to be abrupt , it goes along with the skill I guess! Those who have found good ones who actually listen and hear you: yay! Its not easy to find!!! Sweetie: I remember the beginning of your quest for NSM: I so admire all the research you did and the interviewing and you really did it right!!!
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YAY! I am finally able to join the list of those who are scheduled to replace these nasty TE's with yippie squishee's! Sept.17 is my exchange date! "Say good-bye to my little friends"... LOL! I can't wait! These rocks have been horrible. My PS and I decided to go with 450cc Mentor Round MemoryGel Moderate Plus Profile. I'm anxious to see the final me. Anything has to be better than these grapefruits I've been carrying around under my armpits for the past 4 months! Kate~Thank you for voicing all of your concerns regarding rippling. I took every word to heart, as well as to my PS. He explained the thinness of the tissue with reconstruction etc. but said he didn't see rippling with silicone gel often under the muscle. With saline, yes. I was concerned with this as well. I suppose I don't have much of a choice. We discussed it, he said it shouldn't be an issue. We'll see post-op. I'll let you know.
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GAgirl01- Yahoo for an exchange date!!!! The yippee squishee Boob Fairy will be here before you know it. I'm glad you talked to your PS about the rippling issue. Hopefully it won't be a problem for you. My PS never even mentioned the possibility of it happening with silicone, let alone that it might be permanent. It's very confusing as I've seen completely conflicting posts on how to improve it- go with a bigger implant, go with a smaller implant, work out the pec muscle, don't work out the pec muscle, do fat grafting, fat grafting won't help. Aaaaagh, makes me crazy sometimes! I know I've said before that I wish all the PS's would get on the same page but I'd be happy if they'd just agree on the same book!
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My TE is going away Oct 5th
I cannot wait..this uni-foob that is 6x bigger than the other one is really getting OLD
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