Exchange City
Comments
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To those who have, or are about to have, nipple surgery ... how are your friends/families responding?
Although no one has actually said so, I get the feeling from some of my friends that they think this is no big deal and maybe even slightly frivolous or vain.
I've been very open about each phase of this journey, and enjoyed tremendous support. Now I've come to a stage where I really want to celebrate one more step toward being restored, and I get the feeling others are completely lost by my excitement.
Is this step too personal even for close woman friends, sisters, etc.?
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My husband, mom and bff have all been very supportive, but I've had a hard time deciding what to do about nipples. I knew the BMX was necessary and the TEs and exchange somehow felt important for my emotional health ... the nipples felt like a "luxury," and I felt guilty for "risking" my health and infection, as well as additional healing time. My counselor (who works exclusively with cancer patients) helped me see (after uncovering layers of this) that I really did want to complete the reconstruction and that meant doing the nipples. It's been very emotional, almost more so than the previous surgeries, because I think I was pretty numb and just managing through those. This felt like a real choice, which made it harder. I still have stitches and am more sore than I would have thought from the nipple surgery, but I'm already glad I did it. They make my breasts look very different already.
I hope you figure out what you want/need and go from there. You'll get support here from your online BC friends, no matter what decision you make. Take good care, Maggie
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Texas, I haven't had anyone really talk about the whole nipple thing except my DH and sister. My DH says whatever I need to feel whole, if I don't want them he is fine with it and if I do, go for it. My situation is slightly different though because my PS is doing the nipples during the exchange, so it isn't a separate surgery. However, I think that you need to do what you need to do, not what other people think. Let them wake up every morning and look into your mirror and see how they feel about it then, it is not vain, it is something that you need to do to feel like yourself again. I understand what you mean about the support not being around as much, it seems that people are like "Okay, enough already, you like fine, you're doing things, you're done, we're done talking about it and supporting you". Not everyone is like that, but some seem to think I've had my moment in the spot light, now step aside and let someone else have a turn. It is so personal for us, and it is something that we have to deal with on a daily basis, sometimes a minute by minute basis, and they just cannot understand that. So, I think that we maybe need to cut them some slack, but don't let them tell you that you are being vain or selfish.... just do what you need to do for you! It's all about us right now!
Have a good one!
Paula
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Maggie and other post-fipple ladies - could you please tell me what your down time was for the fipple surgery? My PS said he would do it in the hospital with general anesthesia, but I've read that some of you have had office procedures. I tend to be a huge wuss with pain, so I want to try to gauge my fipple down time better than I gauged my exchange down time (a good two weeks with some residual pain at four weeks).
I think I will mention the fipple surgery just in passing to my close friends - it is kind of an intimate thing and I've held on to the attention stage for about a year now. I agree, Paula, nobody can possibly imagine losing a breast and the psychological toll this takes on us each time we look in a mirror - that's why we're all on this thread together!!! I don't even want to test the waters with most of my friends on this one. My DH is another matter - he will have to listen to the fipple talk.
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Hi Judy (my sister's name also - she's a 6-yr survivor!)
Thank you for the response about the photo site. I knew that it took a "history" to gain access so I'll just be patient.
I feel awkward doing a lot of posting here because I did not have BC. I'm a BRCA2+ prophylactic BLM and will be having ooph in 2 weeks. I've had way too much family experience with BC, and am honestly humbled by anyone who has made it through chemo and rads, not to mention surgery and reconstruction.
I feel a little like an intruder but have not been able to find any other forum with so much information, positive attitude, and collective experience as this one, even on the FORCE website where I do have access to the photo gallery. FORCE is a great resource for BRCA, however the recon pics are mostly "before and after" and I feel I'm sort of in the middle.
I will just stay patient and if it happens, it happens!
Betty
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Kristen,
Mine was an office procedure with a local. My PS uses the "origami"-ish method. I'm two days out and just got back from a long walk. I ache a little, but nothing much. Yesterday I woke up feeling great, cocky even, and then hurt in the afternoon. Humbling. A friend came for dinner and that was really good and distracting. I probably should have taken something for pain when I went to bed, bc I didn't end up sleeping very well. Writing this makes me realize how stupid and stubborn that was, but I think I equate painkillers with previous surgeries... and I'm scared to go there.
From what I've heard from others who have had a similar procedure, they've had little to no pain at all though. There are so many different variations on the surgery, and I think we all have different degrees of nerve sensation ... so I think each story is a little different. I have a lot more sensation (which now equates to more pain) in my left than my right. For what it's worth, it's really no big deal at all compared to the BMX or exchange; I think for me it's been emotional because I had just started feeling really good again and I've been worried that I'll take a while to bounce back. The walk today helped me realize that I just need a few days to regroup.
Hope this isn't supremely unhelpful! Maggie
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Hey Suzdtoflois:
I love your pretty soft baby hair....I think with that face, you'd look great with anything, but you do look exceptionally pretty!
Your "Thelma and Louise" friend
Annie
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Thanks for the feedback. I think some of my friends would be surprised that I still feel like I am walking a tightrope at times emotionally, and that there are days when I still mourn for my "old life". My lashes and brows are still gone, my joints ache from the Femara, I'm permanently limited with use of my left arm due to lymphedema, and I'm no longer comfortable with my husband seeing me naked.
Most of the time though I celebrate the little things and feel that BC has gifted me with a frame of mind to find joy every single day. And I do plan to have my nipple surgery next Wednesday. I've never considered NOT doing it. The creative side of me says I need to finish 'the art project" that is my chest.
I don't want people to feel that they need to support me emotionally forever and ever ... but I few words of understanding from the ladies in my life who are still in one piece would be welcomed.
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Val - I hit the T.J. Maxx stores like clockwork! I know where the very best ones are within a 30 mile radius of my house! LOL. NONE of our stores have higher end bathing suits. So what's up with that? We are getting sloppy seconds?
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RE: Pictures Forum
PLEASE NOTE THAT THERE WILL BE SOME DELAYS WITH GAINING ENTRANCE TO THE PICTURES FORUM. DUE TO UNFORSEEN CIRCUMSTANCES, TIMTAM IS WILL BE UNAVAILABLE FOR THE NEXT FEW WEEKS. SO PLEASE KEEP HER IN YOUR THOUGHTS AND PRAYERS. I AM ALWAYS AVAILABLE TO RECEIVE PERSONAL, PRIVATE EMAILS OF PHOTOS IF YOU NEED SOME ASSISTANCE WHILE THE MORATORIUM ON PICTURES FORUM ENTRANCE IS IN EFFECT. PLEASE PM ME ACCORDINGLY.
DEBORAH
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Betty, you shouldn't feel like an outsider because you didn't technically have BC, if you are BRCA + then you belong here and you are going through the reconstruction and everything else. Please don't feel like you are intruding by posting. I know some are going through more than others, I was lucky and caught mine early and therefore don't need chemo or rads or hormone therapy, but I have still gone through a lot and we all deserve to heal from this and we all need support!
Just a note on bathing suits.... I just spent over an hour at Penney's trying to find one that will cover my ginormous TE's for our short spring break trip in a couple weeks. Wow, was that a horrible experience! I think I tried on about 30 suits and I found one! ONE!!!!! And then I didn't buy it because I forgot my coupon! Grrrr! The problem is these things are sooo big and round, they're like a coconut sitting on my chest, so if the bathing suit is at all revealing it shows some wierd looking indents and drop offs. I like them fine in clothes but revealing, not so much. And I am really glad that I will not be this size forever, too big for me. Never thought I'd say that, but it's true. I had to go up from a size 8 to a 12 to cover the girls up!
CRAZY! So, I guess I'll be going back with my coupon and buying that suit and hope that it fits after my exchange too, would hate to waste that much money! Oh well. Good day ladies!Paula
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Hello to all,
My name is Laura and I'm not officially entering the group with an exchange date. My PS says that my date will be the end of April but I don't have a specific day yet.
I wanted to ask a question to the group.......I would like some feedback on those that have chosen saline implants vs silicone and vise versa...pros...cons...?
I will be a B when my exchange is done....just want to start collecting some thoughts about the possible choices. Looking so forward to getting my TE's out...must be patient
Thanks so much
Strength and healing to all,
Laura
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jizogarden: I opted to go with silicone implants. I researched because of all the bad things that I remembered hearing about them in the past related to leakage and ensuing health issues(the silicone used now is not liquid). I felt comfortable with silicone after reading. My PS uses silicone primarily and said that her patients are very happy with the way they look and feel.My PS also said that silicone works best for smaller chested women because there is less chance for rippling. I am a little over a week out from my exchange and I am very happy with my decision. As Kimberly says, "Yippee Squishy"
Good luck! TCK
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Paula - Thank you so much for your encouragment!
Deborah - Here's hoping things will soon be looking up for Timtam. I don't know her but am thinking good thoughts for her.
Laura - Before my mastectomy, I was augmented from an AA cup to a C with saline implants (300cc, textured round Allergan). I had my augmentation in '94 during the silicone moratorium years, so there was no other option. After 8 years, in 2002, the right one developed a leak and I had them both replaced, again with saline because I had no other choice. I also had some very minor side rippling with the first set, although I used the same PS both times and he did quite a nice job. I think the rippling was because I was quite thin at the time.
For my reconstruction I am choosing silicone because I think they will be a bit softer, but I think you would be happy either way. My PS says he does about 50% saline and 50% silicone, and that it is entirely a personal choice. Having said that, I think he was pleased I chose silicone because I think it will work better for me since there will be less "padding" between the implant and skin this time around.
Good luck!
Betty
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Laura, I went with saline teardrops bc my PS thought the shape would work better with my small frame. Instead of being completely round, they gradually become rounder, so I don't have much of a "drop off." He said he used to think saline rippled more, but has had rippling with silicone, too, in thin women. I do have a ripple that disappears when I stand up straighter. (Now there's an incentive for better posture!)
The silicone implants are much softer and def safer than they used to be, but I just didn't want to have any (probably unjustified) nagging worries or MRIs ... and in the end I went with his suggestion bc he's been pretty right on about me from the beginning. Pretty great that there are good choices available now. So different from when my aunt had BC 30 years ago. Maggie
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PS
Betty, do you know why your previous salines leaked? Thx. Maggie
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Hey Laura! I went with the silicone memory gel implants. I am very Happy with my choice. My PS said he uses mostly silicone on reconstruction patients and let me make the choice. I have to say I asked everybody! Even my little brother who's girlfriend has implants (augmentation)... He said the saline were hard. That got me thinking "if my TEs are saline & hard would the implants feel like the TEs?" I am sure it would be very different, but I did go with the Gels and LOVE LOVE LOVE them!
Yippee Squishy!
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Maggie - I think my older saline implant from '94 probably developed a leak where it was rippled, from friction maybe. In 1994, I think the PS trend was to use bigger sized implants and underfill slightly them so they would be softer. That may have contributed to the rippling. My PS who did the augmentation was a family friend and did such a beautiful job that I didn't feel comfortable complaining or asking too many questions when I had the leak. When I had them replaced I paid a little extra to get "rupture insurance" on the new ones, but never had any trouble with them for the 8 years I had them until they were removed during my BMX.
What I learned from this experience is that when your PS tells you that any implant, either saline or silicone, may have to be replaced in 10 or so years is that it really does happen!
You are right about the MRIs, that is a big consideration when choosing silicone and one I wrestled with, too.
Betty
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All I have to say is that if we all lounge around the Vegas pool in those bathing suits the hotel is going to need crowd control for the line of men that want to audition to be our cabana boys!!!
Wendy ~ I was wondering about you this morning, so glad to hear from you!
Every morning I apply essential oils "scar aid" on my scars and the whole process is devoted to thinking about and praying for each and every woman on this website. I don't remember or necessarily know all of the names but my heart is with all of you!!!
Laura ~ If I ever walk into a public restroom where the women are all comparing foobs you know exactly what I will do!!!
Colleen
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Betty - You are NOT an intruder, girl!! You may not have the same medical issues as some of us have, but you have those lovely TE's and we all know EXACTLY how you feel! So, hang out here with us on EC....we'll help you through it!
Laura - You're right - two boys for me, too. And yes, I'm a little off.....all that testosterone's got to get to a girl, doesn't it? i'm SO happy your scans were clear - and I can't wait to meet you in Vegas!!
Kristinka - okay....our ps's must be twins.....mine also does nips at the surgery center under general anesthesia. I asked him about this last time and he said it's primarily because he drapes your face for sterility and it's a bit claustrophic, but also so there's no chance for extraneous movement. My friend (with same ps) had hers done a few months ago. She didn't have much pain and was only "out" for a day or so. Since mine are scheduled between the two graduations, I wanted to make sure I could wear regular clothes, too. He said that he keeps you in your regular bra, just loosens the straps. Also only uses a gauze wrap around the nipple area and no guards or anything that would need to be hidden.
Deborah - Tell me how someone out there in fancy CA could get sloppy seconds for anything? I'm sure there's some employee who secretly raids all the good stuff before it ever reaches the racks. It is weird, though, that relatively little Fort Worth can have the fancy dog food and good bathing suits and you don't......btw, Savannah LOVES her new food......asks for seconds....and sometimes thirds....
Paula - try a bandeau style top - they come in one-piece and two-piece suits. That's what worked best for me last summer in my TE's. I even bought two different sizes (thank you, Target!) since my shape changed with the fills over the course of the summer. Good luck....swimsuit shopping is never fun....
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Colleen - here's to the cabana boys! They'll be able to find us 'cause our foobs will still be perky even when we're laying down.....0
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Karen, I agree the cellulite on my legs is much uglier than the scars. I actually wonder what goes through peoples minds when they see, many of the women are quite young, I wonder if they have any idea that it was breast cancer or if they just wonder why in the world this woman has no nipples.
Brenda, There are no promises for nerve regeneration but yes you can encourage it. Gentle massage with sponges of different textures, soft brushes, warm, cool etc. You start at the edges of where you have sensation--imagine the nerves trying to follow where the sensation is if you go in the middle of your breast where there is absolutely no sensation, the nerves won't have a clue what's going on so they won't grow. If you start near where they have just a little sensation they go "hey somethings going on over there, lets check it out". Nerves grow very slowly something like 1/2 an inch per month (don't quote that). You can also use a gentle massager, I've actually placed one in the center of my bra and left it on while I drive. And last my PT did some fabulous pressure point work on me and had me do neuro-glide exercises that has improved my sensation and has gotten rid of my numbness in my arm.
Colleen, No idea about the band?? Maybe somebody else knows.
I have to go throw a bday party for my son so I'll finish the rest of the posts later.
Julie
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Julie, you'll have to let us know the reaction when you one day show up at the gym with nips!!
Maggie, I had a saline that leaked also, no idea why, it was a double Luminen that had silicone on the inside and saline in outer chamber, not made anymore! After next one that was all silicone and textured was placed, I couldn't tell too much difference. Tho I tell you, these new (round smooth silcone) ones are unbelievably soft (and squishy:)
Francine, so glad you are pain free, 8 is enough!!
Betty - everyone is welcome here!! Welcome Laura too!
cabana boys, too funny, I'm sure you will all get lots of double takes and plenty of attention!!
Maggie, extremely helpful. I'm thinking of waiting till fall rather than summer for nips, how long do you have to stay out of the water? I found it embarassing to talk about years ago, and feel funny talking to many people about getting another one done. Love what you said!
Paula, in January we went to FL and I tried on all my suits at home, found one that wasn't too strained! I know how you feel, I had huge coconuts! Everyone must have been too polite to say anything! It was a straight across the top style with straps. Straight across and out about 20 inches! oops, sorry, I'm sure you'll find something that works!
Nips and general, I was happy that mine does procedure in office, did not want general again. However, for the exchange when I told anesthesiolgist that I was nautious after previous surgery, he looked up what I was given, switched drugs and I was nausea free for the first time ever after surgery! Now I need to find out what it was!
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Texas - I know exactly how you feel. While everyone close to me was so supportive of my initial decision for a BMx and TEs and implants, most did not seem to understand that I wanted nips. Fortunately my dh was with me, as were a few close friends. And I tried to not let the others make me feel like I was being spoiled. No matter what (flat nips and all), I am SO glad I did it. I feel so much better w/ the areolas (grafts) and nips! I still look at myself and it has been many months. I'd say, go for it if that's what you want!
As for recovery from nips. I can't help w/ that since I had the tissue grafts as well. They were a little uncomfortable from the donation area, but the recovery really was not difficult. I was back to work and walking w/in a few days.
Take care everyone!
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Katey & Val61 - Thanks for the welcomes ladies - I will definitely hang out here, and post too! Val61, I was born in Ft. Worth a loooong time ago, and had family there for many years. My youngest daughter lives in Anna, north of McKinney.
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Hello Ladies!
I have been telling everyone who asks how I am that I am waiting for my PS to build me some new nips! People ask if I am done and I flat out tell them "I still have to have my nipples built - then no one would ever know I had surgery."
They laugh at first, and most people comment they never thought about that (meaning nipples) - I also don't think most people consider if you have a mastectomy you lose your nipples. So many girlfriends never even heard of the tattooing! When I said I was excited to get my tattoos this summer, they wanted to know what I was getting! That opened up a whole new dialogue.
I had 3 women in my life that had BC and only one of them ever complained about her nipple! She didn't want to pay the bill because her nipple went away! That was 15 years ago... But it was the only other time I ever heard anyone talk about it. Now, I know many women with BC and we talk nipples all the time. It's like show and tell!
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Just my two cents worth on the silicone implant question:
When I first met my PS, when I was deciding what kind of reconstruction to have, I asked him if silicone is OK. He said he was familiar with all the studies, and agrees with the most recent one that there is no connection between silicone implants and all the ills that have been attributed to them. My PS is the chairman of the department of plastic and cosmetic surgery at Vanderbilt, which is a teaching hospital, and one of the top cancer centers in the country. So, based on his assurances, I selected the silicone implant, and I love the yippee-squishyness!
Diane
(sorry about the large font--don't know where that came from.
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Musiclovermom: You're onto something. It's a great opportunity to educate people about this step in the process. When I was first diagnosed, I was so shocked by all that I didn't know ... and all that I learned on my own rather than from my doctors. I made a vow to communicate as much of this knowledge as possible to my friends and family, especially the ladies, because someday either they or someone they know will likely need this information.
This really is such a positive stage in our journey. I love all of the laughter and jokes I see when I read this thread. When we're really really old (yes we'll get there!) we'll all have nice perky breasts and that's pretty awesome.
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Betty - Don't be shy about posting on this site. I, too, had a prophylactic BMX due to numerous biopsies and papillomatosis that was so dense and diffuse that the BS felt it would be missed if any of it ever turned to DCIS which it can readily do. That plus my MRI results were really not good. I have been posting and find this site a wealth of information. For the most part we all are in this journey together. I have great empathy for those who have had to undergo chemotherapy and/or radiation. The reconstruction journey involves the same steps wether due to BC or prophy like us. Welcome to the site.
Nancy
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Kimberly - Show and Tell! What a hoot. I'm just getting used to Yippee Squishy.
Texas357 - Yes. Being a little old lady with nice perky breasts, that is pretty awesome! I like that whole idea.
Chris
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