NOLA in September?
Comments
-
Thanks, Jamie. Hope you had a great trip!!
0 -
So... I'm not sure this is the right place to post this... if not, tell me where I should post it... But since a lot of us are NOLA ladies and I've kindly met some of you.... I'm wondering if anyone is willing to share their experience with losing their nipples after mastectomy and mostly how that affected their love making.
Is this subject taboo? Sorry if this is inappropriate. I'm really feeling on board with all of this... DIEP... NOLA... just the loss of my nipples at 41 is a toughie and I know so many of you have gone through it. We are just getting back into the swing of things after our last two kids ages 6 & 3... and now with my TAH-BSO behind me I was really looking forward to "letting the good times roll"....Silly me. Hubby is fine with it but its still really tough to think about.
Thanks ladies.
0 -
Mother, why do you have to lose your nipples? Can't you have nipple sparing? This subject is NOT off limits here. If anybody is uncomfortable, don't read this post! ha!
I can share my experience. I was hoping for nipple sparing on both sides, but Doctor Stollier did not recommend it for me on the cancer side, because of the size and closeness to the nipple. So I have one side that is nipple sparing and one side where the nipple was removed, so I can compare.
#1. Dr. Stollier removed just the nipple and not the areola. When I looked and saw that, I was so happy. I didn't look totally "amplutated" in that spot. Everybody locally was shocked by this, somehow they feel you should remove the areola too (idiots).
#2. They can rebuild the nipple out of the areola that is left behind. But this makes the areaola not "full" or round, so then tattoo is required to round it out, then you have to to both sides to get a good color match.
#3. The side that was spared is not the same nipple it was before. It looks the same, it feels the same to my husband, but all that sensation that was there before for me, is now gone. Acutally, it kind of hurts to be touched a lot. The recon side doesn't feel much of anything, doesn't have as many left over sensations that are translating into "hurt".
I hope others share their experiences. I know when I had tattoos done, I had spots on both sides where I thought I was going to go through the roof. So I still have "sensation" on both sides in some spots. I know others who had surgeries at other places and had their nipples/areola totally removed, could feel nothing during tattoos.
Hope this helps.
0 -
Mother.. I am like Spring, one spared and one reconstructed. To me, they look and feel the same. I have no sensation in either. Although oddly after this last surgery I have a little sensation in my left breast that I didn't have before. How odd is that? But not the nipple. And no pain either. So as far as an intimate moment goes, I feel nothing there, and because of that my husband doesn't tend to go there. That is just HIS thing, he thinks why bother if I can't feel it? But if I hadn't mentioned that, he would know the difference.
0 -
Spring,
I was told by Liz and then Dr. Stolier (via pictures) that it didn't look like I would be able to keep them... (even tho' this is prophylactic). Too much distance between nipples and chest.... blood supply issue. Not sure if that will change once I'm there in person. I did nurse my kids forever... like a decade and a half... so I am quite sure that is part of it even tho' I've read breastfeeding doesn't cause them to elongate... not sure I agree.
I don't know if I can't keep my nipples whether that means I can't keep my areola too or what.... I am confused and haven't spoken to anyone. I've asked Liz for names of people at NOLA I could speak to about this but she hasn't gotten back to me... I've requested this twice now via email... I know they are busy so I am trying to be patient. I sometimes feel I'm left hanging as I've had a few other questions and they are not following up with me. I suppose I just need to call.
I would like to be prepared ahead of time what I will see when I get out of surgery if I can't keep my nipples.... where my incisions will be... will I have an areola... etc... I wonder if I'm given the opportunity to give it a try whether I should go for it or not... Is it worth it to end up with one nipple that takes and one that doesn't... I know Vinnie said it would be easier to have a clean slate... Still... if I end up with nothing... I am quite sure I will have nipples reconstructed and have Vinnie do the rest...
Regardless.. .I'm still reconciling all of this and my breasts are a big part of my intimate life and I'm just wondering how that adjustment goes... I know it's a toughie.
And the ladies with one nipple sparing nipple... does it still erect and then flatten depending on whatever seems to stimulate it? even tho' I know it doesn't have the same feeling and sensitivity? If I reconstruct one will I have one erect nipple and one flat one? I know I will never be one of those ladies who go without a bra after reconstruction... I just can't imagine.. I'm pretty big now... even if they drop me a couple sizes...I'll still be big!
0 -
Mother.. The spared nipple does not change for me... but I have heard some women say it does react.
0 -
Mother- I also have one side nipple sparing and one side not. From a distance they look the same but the nipple reconstruction was not done at NOLA and close up does not look exactly the same as the other side. In retrospect I guess I could have asked to have it redone at NOLA but never did. Depending on the side I have normal feeling in about more than 1/2 to 3/4 of the reconstruction- but I have no feeling in either the reconstructed or spared nipple. I might be an outlier here but the loss of feeling doesn't bother me at all.
0 -
bdavis, I just looked at your latest pictures and you look great!
DeutschEspañolFrançaisItalianoPortu0 -
Mother - the big thing about intimacy is that it changes with time. It is very difficult to imagine what your intimate life will be like with unresponsive nipples, but you do adapt. They may not be able to give you a definitive answer on where the scar will be, but it will be hidden in a bra or swimsuit. I will admit, my girls do look a bit funky without a nipple and areole. So it will be a bit shocking for you, but once they create a nipple and Vinnie works his magic they will look normal. Because every one has a different shape and coloration, maybe you should take a few pictures in good light to help Vinnie bring you back.
0 -
Mother, I hope you will be able to get some answers ahead of time, but in any case, there will be time to talk about it when you go down there. Doctor Stollier told me he would not reccomment that I do nipple sparing on the cancer side, but he said, if you want to keep your nipple, we can do that, i just don't recommend it. So I think he may let you try to keep yours if you want. You just need to understand all the factors. I wonder if you could call and talk to Dr. Stollier ahead of time? He is really a nice guy. If I was you, I'd google him and call his office. What's the worst that could happen. ha! (I am more of a beg forgiveness type of person than ask permission).
0 -
Mother... I think I said before, I was told I could keep my nipple, but my local BS thought I shouldn't because that was my cancer side. Even though the tumor hadn't been near the nipple she felt that I should remove ALL breast tissue to avoid any future worry, considering I chose MX over radiation... In retrospect, I feel I should have had them both removed and reconstructed because they are slightly different with projection, and neither has feeling. I am very into symmetry and so I think they would be more symetric had I had them both rebuilt. Although, they are pretty darn close.
0 -
Motherandchild,
I'm a long way off from getting nipples, but like MartyJ suggested, you may want to take pictures of your natural nipples to be used later. Or just use the "before" pictures your plastic surgeon takes at pre-op appointment. I asked for and have high quality "before" pictures from PS office that had room with professional photography equipment so have these pics for future reference, possibly for Vinnie to do tattoos.
0 -
Hi Everyone! I've been reading here A LOT, and not posting much, but I think it's about time to start since I'm only about a week out from a planned BMX and GAP flap reconstruction with Dr. D in NOLA. I'm getting more and more nervous by the minute. I'm worried about the surgery. I'm also a little worried that something will prevent the surgery... like they can't find a good donor site for the tissue they need (anywhere on my body). Worried that they'll find that my cancer is worse than anyone thought and more/different treatments are needed. Worried that I won't have everything I need...that it will hurt too much... that there will be complications... that I might not be able to heal... that I might alienate every last person before I recover enough to take care of myself. All these fears are reasonable!
In an attempt to soothe myself, I'm packing and preparing today. I'm finding button-up sleepwear and clothes, making sure the freezer is stocked and the house clean. On that note... does anyone care to guess how many days (weeks?) it will take before I'll be able to put on a pullover dress or top?
0 -
Hi Kim,
I had my BMX / GAP flap in NOLA and as soon as I was wearing my own clothes I was pulling them over my head. And was wearing my own over-the-head nightie in the hospital. That said, it needs to be loose, nothing you have to shimmy into.
Also, perfectly normal that you are worried and thinking about everything. Oddly, when you arrive in NOLA and have your pre-op an almost calm will come over you. They are so reassuring. And Dr D is a gem. Have you met him?? I see you are from Boston.
You will see that the GAP flap is not that bad... I was walking all over the Quarter post op. And had no pain. I did need help with my compression garment and all my ABD pads, was fatiqued, and accepted help once home with meal prep and house cleaning, but considering the long surgery and invasiveness, you should bounce back quicker than a DIEP gal. (I am also one of those so I can compare).
As for worry about severity of the cancer, well, we have ALL been there with that worry. My advice, don't borrow trouble. No reason to worry unnecessarily.
0 -
I wore the button down shirts and nightwear until about 6 weeks post stage 1. I certainly could've worn a loose over the head top from the get go, I had no arm movement restrictions since I didn't have any lymph nodes removed, but I think they don't really want you to raise your arms over your head initially too much, and its much easier with the drains, etc. I wore yoga pants until about 5 weeks when I noticed my abdominal scar was significantly healed and I no longer needed betadine, but I still used the pads for another week to protect the area. Two to three pairs of pajamas with button down top and three pairs of yoga pants and three button down or zippered tops suffice in my opinion. I did laundry daily anyway to wash the center bra and compression garments so I repeatedly washed the above.
0 -
Hi Betsy!
Thank you so much for the information, advice, and general soothing. I am so encouraged by your report of not only little difficulty with pullovers, but walking all over the quarter! Based on your "don't borrow trouble" idea, I decided it's a good idea to confine my worries to things that are A) affecting me right this instant or
that I can do something about. So... packing, cleaning, getting ready. I also took some other person's thoughtful advice, and I'm coloring my hair. 
One more question about clothes? I have a lot of stretchy tunic dresses and jersey wrap dresses that are super comfortable and would fit me no matter how swollen I got. Do those make sense to bring given the drain situation? Or is it really better to wear two-piece outfits with a separate top and bottom. For some reason (is it vanity?), I don't want to slouch around in gymwear, and my vast wardrobe offers lots of choices for other types of loose-fitting comfy-stretch stuff (not to mention a range of sizes!)... I'm still just not sure what's practical!
0 -
I bought some gauze pants at old navy, they looked nice enough to wear outside, they had a stretchy fold down waist line. I also highly recommend button down shirts, this all makes it one less thing to worry about, you still look decent and can pin your drains on the inside of your shirt.
Hope this helps
)0 -
Kim... I tried wearing a sundress and the drains just made it all lumpy, so that was not my first choice. This past trip, my daughter commented that I looked so vogue for a patient straight out of the hospital. I was wearing my flowy Gilligan and O'Malley lounge pants (black) and a loose top and a flowy sweater, also black. I must admit, no one could tell I had drains, I was comfortable and rather stylish considering. So I personally vote for separates. You don't have to wear champion brand sweats. There are plenty of cheap options. I shopped at Target for this stuff...
As far as the over the head stuff, I did have my SNB in December 2010 with my lumpectomy, so perhaps that might account for my ability to raise my arms. But I didn't reach way up. If the top is loose enough and somewhat stretchy, it is possible to get arms in without much movement. Getting arms in a buttondown shirt was as much movement to me... So you need to judge.
0 -
Kim, I had a great thick cotton wrap-around dress in a busy print that I lived in after my BMX and SGAP. The jersey dresses might show too many lumps. Put on a half-apron with some palm-sized bulky things in the pockets and try your clothes over it. Prints are great for hiding lumps. I borrowed some of my husband's cotton print button-up shirts, but my sister immediately let me know that I looked like our grandfather (oh thanks. You have a 10-hour surgery and let's see how fantastic you look, sis). If your tunics are not snug, they should work. Think stretchy and comfy around the hips with a loose flowing layer on top.
FYI, I also walked all over the quarter by day 5 after my SGAP. Walking was a huge help to my recovery. Getting started was always hard but, after day 2, I was always able to surprise myself with how far I could walk and it always made me feel so much better. That said, some women did not have this experience and felt a little defeated by it. You will know what you can and cannot do. I learned from this experience that our bodies can handle so much more than we realize until we have to go through something like this. I was also really glad that I'd been doing core workouts for months beforehand. It made getting out of bed a lot easier! Stay busy, enjoy your pre-op body with sweaty workouts and long walks, and trust that you are seeing some of the best in the field and let that lighten your burden a bit. Best wishes!
0 -
Hey Ladies,
April 30th is my morning and afternoon rendezvous with Dr. D. and I'm hoping he wears his denim overalls. I wanted it to be one on one but alas he's bringing a few friends. (just having fun with ya'll).
I just want to say thank you to you ladies. I feel a sisterhood with you and I know I'm still a newcomer. How come we don't have t-shirts???... 'cause I want one! "NOLA Goddesses Unite".... Send me your suggestions and we'll get 'em made!
0 -
Kim L, sounds like you are anxous about everything, which is most normal I tihnk! I always said as the date drew nearer, I would get more and more anxious, and by the time I was down there, I just SO wanted it to be over and on the other side. Then you can focus on healing and getting better.
I used this meditation for a successful surgery, and it really helped me focus and trust, and let it go. It seemed to help the anxiety. I posted this above in the information at the top, but here it is here as well!
0 -
Mother... You will see that they actually have shirts down there... I can't remember who makes them, but I believe its one of our own.
0 -
Kim- it is okay to be anxious. We have all been there. Waiting is the worst part. I am a worrier and like to have things planned out. As many have said here, by the time you get down to NOLA and see the doctors you will feel better. The weeks before surgery are the most challenging, or at least they were for me. I also had a SGAP procedure. NOLA will take such good care of you. They treat you like a queen there! You will be very impressed. That is why so many women have gone there and want to pass along the good word about this place.
Question- I'm interested to hear what others used after Kelocote? Did you order more or try something else?
Chelle- I am catching up on thread, but wanted to tell you that I am sorry about your friend and how they handled your birthday. My birthday was a few weeks ago. February birthdays are the best right? LOL. I wanted to make it really special after going through everything last year. I didn't get to get together with any friends and was kind of bummed out. Growing up, my mom impressed on me that every birthday is special. She celebrates each of our birthdays and wants to make it a special day for us. We should celebrate every milestone! Sending you many birthday wishes!!
Bdavis- How is your recovering going? Saw you are back to work- good for you!
0 -
...thanks to everyone for the bday wishes...happy bday audrella!...fellow aquarian...:)
thank you for responses about the bloodwork....arghhh....i have gotten really good at not freaking out about every little body twinge/test...etc...and then there are times it all just puts you in a crazy tailspin....
thank you so much pinkheart for your experience and wishes and hope it is better....did you ever end up seeing a hemotologist?....i hope all is good with you...
thank you too downey and marty
betsy and pamela...sounds like youre both doing great...betsy, what's the drain situation?...you seem to be pretty good at functioning with them....after 8 weeks that i had them after sgap, i was reborn when they came out....
pamela that is inspiring that you are chomping at the bit to get back to tennis....wow...
....so, the eve of surgery...yikes....dr m is going to fix my rear, i think remove dog ears, maybe fix seroma or scar tissue if present....
for those of you who say the flaps after stage 1 doesnt look quite right, just wait...she showed me how she will remove a lil skin in the right place and perks that right up!...she will be doing lipo on my outer thighs...and then getting rid of it...wont have fat grafting to breasts as just waiting still to see what happens with the trouble breast....she wants me to wear compression for 6 months!.....i guess maybe partially based on my particular skin, etc...some loose skin from losing weight....
the easy part of this is knowing i am in the best hands....dr m will take care of me and look out for me....and that gives me peace to know that.....
good luck audrella, anita, cherrie, diane.....wow, stage 2 for all of us....it'll be great to go through all this together.....
....healing and happy thoughts to all....:))
0 -
Wow, this really is Stage 2 Week! Audrella, Anita, Cherrie, Diane, Harmony - can't wait to hear how it goes. Steps closer to the end.
Harmony - thank you so much for what you said about Dr. M's plans for your flaps. It gives me hope. I tell people that I am still at the hamburger bun stage. I am pretty sure she tells everyone she wants them in compression for 6 months, but knows it is asking a lot. This way she gets us to stay in it as long as possible - pushing us to go the extra mile. I am thinking that fans and fainting couches may well be needed for us all this summer!
Healing thoughts and gentle hugs to the February girls!
0 -
Brenda- sleep well tonight. I am thinking of you little mermaid.
Audrella, Anita, and Diane. Thinking of all of you this week. We are the stage 2 girls this week. The February Fab Five! I can't wait to hear how you all are doing since Diane and I are the last ones.
I am packed and leaving on Wednesday. I am not as nervous for this one except I wish I knew what was being done. Gee Marty, I certainly hope to be out of compression sooner than that. Is it individual??0 -
Cherrie - I think that she recommends 6 months, but knows we don't always make it. I believe Dr M feels the longer the better. I read an article by a PS who won't even let his patients take the compression garment off for the first week - no showers, no nothing - and then they are to wear it for several months. I am sure that Dr. M will adjust her recommendation based on what she lipos, but be prepared. Everytime I think about it, I shudder to spend a summer in compression.
You will have a wonderful week and I know this surgery will be a breeze. I will be thinking of you on Friday and sending you positive, healing thoughts.
0 -
Hi fabulous ladies - I just wanted to wish everyone well for the Stage 2s this week. I am coming up right behind you, next week. I thought I wasn't going to be nervous for round two, but what do you know, I am. Off and on, at least. Wishing complication free surgeries for everyone!
Sonya
0 -
February stage 2 party! Cheers for nipples and lipo! That's the recipe for my cocktail! Good luck ladies and most importantly cheers to no complications and minimal recovery issues. I have been so busy working that I have not had a minute to even think about surgery this week yet. 25 hours in two days - ugh! I have been working in my sleep as well. I'm glad I will be off Wednesday. Plan to catch up the laundry, grocery shopping and housework. I think I will be so tired that I could sleep through the procedure anyway but I will take the anesthesia without a doubt lol! Anxiety is not an issue since I had a 2a and think the 2b will be even easier. Not looking forward to the lipo pain the first day or two. Thank goodness for the dilaudid. It really kept things controlled well for me last time. I don't tolerate pain at all so I like the narcotic relief that first couple of days. I'll be thinking of you all and please post when you feel up to it! Safe journeys and happy healing!
0 -
I am perplexed about the difference in recommendations for compression, as dr. S. only recommends two weeks and dr. M recommends six months. Can't figure it out.
Best of luck to the fab five and the couple of others that come after! Keep us posted.0
