Exchange City
Comments
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Wasn't a typo (nipple sharing).. the idea is to use part of one nipple to reconstruct the other..
50/50? Nipple sensation is very important to me.. I'd rather be lopsided than take that chance
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Lilah: Is the 50/50 depending on the surgeon's skills or is it more that's the risk you take?
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xtine: Hi there. I've heard of nipple sharing. I didn't have it done but my aunt did. I had a BMX with my nipples removed, but my aunt had a nipple sharing uni-MX in the early 80's. When I was DX, I talked to my aunt about her BC and she described nipple sharing. When the new foob is reconstructed, the nipple from the natural breast is taken and the PS make two nipples from that one nipple (cutting it in half basically and reconstructing it). I was interested in having it done and asked my BS about it prior to my BMX. I'll be honest, she said that procedure isn't advisable anymore and she wouldn't do it. Her opinion is that it's too risky. If there's any possibility of cancer cells turning up in the natural nipple later on, then it would turn up in the reconstructed breast as well. I don't want to scare you by telling you this or disappoint you. But, I will also say, 30 years later my aunt never had an re-occurrence in either breast. I never told my aunt that the BS told me this. From I've read on this board, many BS's and PS's have different opinions about procedures so you have to go with your gut, your BS's recommendations, and then make the best decision for you. My best wishes on your surgery and on whatever surgery you decide.
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Totally unrelated to the exchange- but a question to those of you who have had the rock-hard expanders. I have had two amazing women buy me gift certificates for massages. I have been SOOO in need of a massage lately, but I have no idea how one would go about getting the massage with the expanders. How do you lay on your stomach? Is there some special way they would do it? I don't want to wait until after my exchange (which won't be until July) to get some R&R. Any thoughts or experiences?
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heathermcd - when I was preggers I was once given a professional massage laying on my side with a lot of pillows. Maybe ask about that possibility? If they do prenatal massage that's likely one method they're familiar with (the other is a special hole for the belly, but I found that uncomfortable). I would also make sure they're comfortable/familiar with treating people post mx... I wouldn't want to risk lymphodema or injury from a deep tissue massage...
travelgal - did your aunt ever talk about sensitivity of the existing nipple? Probably an awkward question to ask
. Anyway, from my research I have learned that there was that concern, but perhaps invalidated by some recent research to that effect... 0 -
Heathermcd - I got massages often with the expander and would lay on one of those horseshoe neck pillows - I found it worked perfectly for me. My massage therapist also said they have a breast pillow that "large" women use - I never did but knew it was an option.
I also did not let her massage the arm I had my nodes removed from
Karyn
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Hi xtine: My aunt didn't mention if she lost sensitivity or feeling in the nipple but I can ask her if you like. We very close. It may be a few days before I hear back from her since she lives out of state. If you want me to ask...I'd be happy to.
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xtine -- OMG I am so sorry! I have never heard of nipple sharing and so just assumed it was a typo. Forgive my ignorance.
MBJ -- I don't know if it's my PS or a general thing. My PS said no one can guarantee that you won't lose some or all feeling... and that she found it to be a 50/50 thing. As it happens, I not only retained the feeling but I have MORE feeling (at first it was too much but it has gotten more normal now). My PS said it was from the shortening of the nerves (due to the lift).
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Wow, if I thought I wouldn't lose any feeling, the nipple sharing, in concept, sounds like a great idea. Who knew???
Lilah: Thanks for clearing that up for me. It makes sense. I know that my augmented side is now hyper sensitive and it has also calmed down some but your surgery was much more intensive then mine. I have a couple friends who have had reductions, which I guess is similar to a lift. I'm glad you were one of the lucky ones.
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bonnie - thanks for the info. For some reason I am hesitant to take it. My ribs hurt so bad they are waking me up at night...so I may give it a try. I tried a muscle relaxer last night to see if it would help. It didn't. Tonight I may try a Darvocet. I don't know why they hurt so bad. Last night I dreamed I got rid of these implants and went nice and smooth and flat. I am just done with all 'this'. Does anyone know if you can go flat after you've been reconstructed? Are the pec muscles ruined?
k
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My ps recommended Ativan (like xanax) for my rib pain. It quiets the irritated nerves and worked better than Darvocet for me. A small dose shouldn't interfere with your daily activities.
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Mom3 - I had my exchange done 11/24 and I'm still having quite a bit of pain too. Looks like we had similar treatments during the same time-frame. My bi-lat was 4/8/10 with TE at that time. I also had radiation which ended in July.
The radiated side is the problem for me. My PS had already warned me to expect more problems with that side and he really tried to sway me to consider some other form of reconstruction but I made it clear that I did not want any other type of surgery. He said he removed a TON of scar tissue when he did the exchange. Still, that side is very tight and painful. I'm having a lot more pain under that arm than I had before. I don't know what's up with that.
I didn't get the drain on that side out until this past Monday. Since the beginning of this nightmare I've had a total of 8 drains. I generally deal with pain fairly well but the pull of that drain hurt more than anything I've felt in a very long time. I swear it felt like someone stabbed me with a 12" stick which was blazing hot. Unlike the other pulls where the pain went away after a few minutes it felt like that for at least a full 15 minutes. I was crying and cursing like a crazy woman.
I went back to work on Tuesday. I still can't do full days but I'm doing what I can. I take percocets for pain but I can't take them at work because they make me too sleepy.
I'm assuming that if this fails you can take the implants out and go flat. That's my plan and what I've told my PS. He hasn't told me that isn't an option.
I hope you're feeling better soon!
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Darvocet has been taken off the market, so those of you taking it should call and get a prescription for a different pain med. My pharmacy called and asked me to bring my Darvocet back for a co-pay refund. I'm taking low dose of Neurontin at night for nerve pain in my legs and it works really well for the rib pain too.
Bec -- I'm sorry you are having such a tough time with your radiated side, but at least you are now drain free! Those drains are no fun at all. I have the underarm pain too since my implant was removed in October and am not sure if it is scar tissue or a lymph thing or what. It's uncomfortable, though. Hope everything feels better very soon! I had my implant (2nd one) removed in October after 2 episodes of capsular contracture. Plan to heal up and be flat on one side for some time and then decide if I want further reconstruction or not.
Anyone know how long it takes probiotics to "fix" the intestinal tract after it is destroyed by antibiotics? I'm feeling better after 4 days of probiotics twice a day, but I still have to be really careful what I eat/drink.
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I have not been active in the forum much in the last year or longer. I pop in and lurk the last couple of months. Have been reading the exchange city as I had my exchange surgery Dec. 10th. and had my FU with PS yesterday. Said all looks ok and I can shower and put on sports bra.. I did the shower today but ended up having a full blown aniexty attack because fear of past infections with fluid retention and wet incisions. My original lumpectomy then Double Masect. was done two years June 08hen expander infection and 2 more surgeries in July of 08, after my reds on one side in Sept/Oct 08 I put off exchange surgery longer that the 6 months. My PS was ok with waiting said if more time to heal was not going to hurt the radiated side.
Well the rad side had so much scar tissue and I ended up getting a leak in the expander on the non cancer side and went flat. Part of my reasoning was they type of fast growing cancer I had. If it came back in first 2 years was not good prognosis and did not want to spend the last of my time and days in reconstructive surgery. So far all looks good and no reoccurrence. I had 800 cc implant in each side. I don't look very big but I was a c/d before cancer so I will look more like normal. just panicked at getting the incisions wet because that is what started the whole mess two years ago. I had to take something today to calm me down and I am better. I need to get back with this support group hear and talk to others that understand better that my meant I live with (hubby & 2 sons 16 & 22) . I want to put this behind me and live life again. I would like to get permission to post photos and look at others that are farther along in the exchange maybe it will help my state of mind and help me not be such a germofobic about getting dirty or infections again. Sorry If I am rambling, meds are not helping me think clearly but I think I am just reaching out for some others that have been there and done that and know how it feels to just want to cry. Thanks for listening. I will try to pop in and be a supportive part of the group.
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Looneymom: Wow, you have been through alot! PM me so that I can help you get to the picture site. Gentle hugs.
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Question: What steps did the hospital take prior to all of your procedures. I thought mine was the standard until I heard what others have been through.
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Bonnie, I found I had to eat yogurt for about a week, I tried it with bananas (one of the RN's advised this) I hate the antibiotics worse than anything else, they make me feel nauseas & screw up my gut!0
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Looneymom--you have been through a lot and it's no wonder that you are being extra cautious this time. I just got over an infection and don't have a clue what started it -- think these things just happen. It started over 3 weeks after surgery and came on very quickly, but the nasty antibiotics have taken care of it and now I just need to get my stomach back to normal. Hope everything goes well for you and your anxiety decreases with each day. Take care of yourself.
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Ok I haven't posted in this forum in a few weeks, but I wanted to drop in today. But, I had my exchange this morning, and I just wanted to say that even though I haven't posted much, I wanted to let you ladies know, your words DO reach people. I've been kind of quiet....well very quiet on here because it seemed all my questions had been answered, my situation was fairly routine, no surprises, and I felt that I didn't have much more to add than what's already been offered. I would just be redundant.
But I do know to be patient when I go for my post-op tomorrow, and to not be too alarmed at what I see, my foobies will be changing like the leaves in autumn....which makes me think this is kind of like going through puberty all over again, The mood swings, hormones, getting new boobies, and being boy crazy.....oops sorry TMI on that last one LOL.
But once again thank you ladies, and now that I am finally able to exhale a teensy weesy bit, I feel a little more comfortable posting here and not just over on the picture site.
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Oh and can anyone answer this quick little question? On the back of the implant ID card, it says, Reference #, the Lot # then SN #. What does the "SN" stand for? Those have different numbers from each other.
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MSNOMORELUMPS - Good to see you posting! I've missed you making me laugh!
Soooooo glad that you had the exchange surgery! Sounds like you're in a good mindset ... love the phrase, "changing like the leaves in autumn" ... so TRUE! It really is! I have been totally shocked at how much they change! I have no clue what the "SN" stands for ... the first thing that comes to mind is "Stock Number" but that is a guess. I've had a long day today and totally don't trust the first thing that comes in my mind tonight! You post here as little or as much as you want. You're welcome here! I had my one-week post nipple reconstruction surgery appt. today and the nips change too ... not as much as the foobs ... but if you chose to get the nips, the seasons keep changing on them too!
So good to see you on here ... praying for a great result for you and an uneventful recovery! Blessings!0 -
Hi, All: My left TE was deflating gradually, and my PS replaced it last week. Now, the replacement TE is definitely higher than the right one. To fix this, my PS indicated he would have to cut muscles in the left breast pocket to move it downward.
Has anyone else had this type of complication? Just curious.
I'm leaving on vacation tomorrow, but will check back in about a week to see any responses.
Thanks!
Julie
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MSNOMORELUMPS, SN stands for serial number0
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MFROG-LOL, now it sounds like the most ridiculous question. Ok I can blame it on the Vicodin....yeah that's the ticket. Thank you!!!. I'm sure if my brain cells were not arguing with each other right now, I probably would've figured it out...I think....
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Hi Dawn, ((((HUGS))) I was going to address the question to you earlier....but I didn't know if you remembered our prior conversations. I always feel bad when someone comes up to me and I have no clue who they are, what they're talking about, where I know them from, or if I might have birthed a kid with them. So I never assume anymore. LOL
Glad to hear your nips are doing fine after a week. The human body is amazing isn't it? So is the technology that's available. But I had a nipple sparing BMX, so they're still there. The interesting part about them, was I had inverted nipples before BC, (my poor son almost starved to death when I tried breast feeding him, they never wanted to show themselves) But post BMX they are now occasionally coming out to take a peek at the world....not at the same time, the left one is a little more curious than the right one, but it's still progress. I also have more sensation that I did before. Go figure.
But this morning while waiting for my surgeon, I was reading the Sunday comics, and I realized my expanders looked just like the eyes of that little dog Odie from the Garfield comic strip. Just big and round with these two dark spots in the middle. and yes, I had medicine in the IV drip, so I'm gonna chalk that up to the meds. But it's funny how everything always comes back to the boobs! Even my Christmas tree...long story....I posted in the picture forum in Travelgals thread "Expanders at 600 cc's" I think is the name of the thread, but my tree has all the bulbs in sets of two next to each other like foobies. My little joke that kept me laughing until my exchange date.
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MSNOMORELUMPS: Great to see you back on here and yes, we have missed your laughing personality. Great new avatar! You will see many, many changes--mine looked like e hamburger and then after the third month, bam, it dropped and fluffed and started to look more natural. Glad you could also do nipple sparing and that you now have more feeling in them. Congratulations and good luck at your follow up. BTW: Thanks for sharing your christmas tree decorations, LOL!
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MBJ- It really warms my heart to know that this is such a welcoming place. This world has gotten so impersonal as of late, and it's refreshing to see that you make an impression on people, just like they have made on you. I'm glad you guys are not offended by my 'tumor humor,' it's what got me through this. But wow I broke it off with my boyfriend, and quit my job as as a caseworker for the county, hoping to start 2010 with a fresh clean slate. Well who knew? But I can honestly say, the BMX, getting rid of him, and walking away from a stressful job, were 3 of the greatest decisions I've made. I honestly think, if i have found the lumps before taking those steps, I probably wouldn't have had the courage to do so. I would've stayed at that job for financial security, I would have stayed with him for comfort, and I might have chosen a lumpectomy. Which after my BMX, my BS alerted me that I had the most dense breast she ever had the pleasure of working on, and she really worked up a sweat, and consequently, when the 2nd pathology report came out, they found a highly aggressive tumor, that 2 mammo's and a MRI didn't see, so if i had played it safe, I might not have been around to torture my son by singing "All I want for Christmas is my two front teets." So I chose to laugh my way through this whole thing...and most of the time, I laughed by myself.
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Okay, it's time for me to jump in and ask for advice. I am overwhelmed and not sure how to proceed. I had a bmx in March with TE for the implants following chemo. It turned out I needed rads due to staging, etc. I finished rads 2 wks ago. My PS says I have 35-50% chance of complications with implants. That's a big number! He thinks DIEP is the way to go, but I have reservations. I went to another PS for a second opinion and he preferred TRAM, though he could do DIEP OR implants. Basically, the ball is in my court. I'd love to hear your input or how any of you who had rads arrived at your decisions. Thank you.... Daiva
oh, my PS wants to move my recon. to 3/11 instead of 6/11 because I have a leak in one of my TE. As it stands right now, my DIEP is scheduled for 3/8/11. I starting to freak out because I am not sure what I want to do! If I choose to get implants, the TE needs to be replaced so we can continue with the fills.
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x-ray girl --Get yourself a really good PS and take all the time you need to make your decision. I had 2 failed implants after rads, so am one of those 35-50% women. My recon options were tram or lat flap when the 2nd implant was removed in October, but I chose to have the implant removed. Still not totally healed and not sure how this is all going to work out, but sometimes we just need time to make the important decisions. My advice would be to do what feels right for you and don't let anyone rush you into a decision you are not ready to make.
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I agreee, although rads and implants don't always work for everyone, like Bonnie, there are some who have great results. Don't rush. If you are unsure, get a referral from you GP or Onc and see what they say. It's all about the integrity of the skin, how fast you heal and how much scarring you have. I scar really well-by this time next year my MX scar will be almost gone. How do you scar? My first choice BS wanted to radiate me and I didn't need it and he refused to do delayed immediate recon and planned radiation when I had no node involvement. Luckily my Onc agreed with me that he was being overly aggressive. He gave me one option, to have a Dorsi Lat. The problem with that is if it failed I would have had no other options and been without one breast until I either got enough fat to do a diep, which was unhealthy for my case and unadviseable because of a prior surgery to my stomach. I opted to take a chance on needing radiation and having it possibly fail. bonnie is right, you have to do what makes you feel comfortable. Dieps, implants, Dorsi Lats, they can all fail if it isn't the right person or surgeon or just due to difficult skin and scarring and healing issues. Sorry, TMI? I would PM Whippetmom and get her advice. I also know that Estepp had great results, however, I think she might be out of town right now. good luck with your decision and we will be here to support you no matter what.
Bonnnie: You have been so strong through all of this and I hope once you are all healed you will give recons another try, but you have as much time as you want to heal inside and out because what you have gone through has been more then most of us had to deal with. I am just happy you are no longer in pain. Gentle hugs and healing to you.
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