Nipple Sparing Mastectomy with immediate reconstruction
Comments
-
inLA- I'm almost positive hurleygirly did not take Tamoxifen. She and I had similar DX- DCIS, Stage 0 and both did bilateral so were advised we did not need to take it. Since most BS's won't do NS on those with invasive cancers I sometimes forget some of you did have more agressive forms of BC and do need to worry about Tamoxifen. I did read you can't take Tamoxifen while trying to get pregnant as your baby could have birth defects but haven't confirmed this from a reliable source. I did find a thread on here that might have more information. It is called "Coming off tamoxifen early to have a baby". I will contact hurleygirly and see if she has any words of wisdom for you!
Here's a link to that thread-http://community.breastcancer.org/forum/27/topic/763924?page=2#post_2487365
0 -
I had invasive ductal carcinoma an my BS did nipple sparring for me. He biopsies the tissue behind the nipple intraoperatively to know the area is okay. My surgeon was John Cox in Tampa, FL.
0 -
inLA - I follow this thread but haven't posted for a while - re pregnancy and tamoxifen - as Kate said, you can't get pregnant on it, but you can get pregnant after it (depending on all the other wonderful factors of age, etc.). Looks like Kate found you another forum here, also, the Young Survival Coalition (www.youngsurvival.org) has a lot on this b/c it's an org. specifically for younger women w/BC. I lived thru all this when I was first dx'd in '01 when I was 32 and trying to get pregnant - ultimately chose to take tamoxifen and we adopted our daughter, but did seriously consider trying to get pregnant immediately post-treatment and then go on tamoxifen, skipping tamoxifen, etc. etc. It's just another layer of mess that breast cancer can lay on you! Good luck - let me know if I can help you any other way.
Sarah
0 -
inLA- I emailed hurleygirly and, like I thought, because she had DCIS/Stage 0 she was given the choice by her BS whether to take Tamox or not. Since she knew she wanted to try getting pregnant right away she opted out.
0 -
Sorry if this has already been addresed somewhere. Is it possible to have a nipple sparing mastectomy with immediate reconstruction if radiation is necessary? thanks!
0 -
Wow, ladies, thank you so much for the info. Kate33, I appreciate your reaching out to hurleygirly and for finding that thread for me. I can't always seem to navigate the search engine. And Sarah, it means a lot that you weighed in with your experience. I will definitely let you know if I have any questions...
As for NSM, CindyT, I just had this procedure done with radiation being highly recommended but not definite. When the pathology report came back post surgery, because I had positive nodes, radiation became part of my treatment protocol. I do know there are potential complications like capsular contracture but when I met with my radiation oncologist (who works exclusively with breast radiology) she said she works around implants a little differently. Even with that, my surgeon and my radiation oncolgist both advised me there is a 50% chance of a reaction but I was assured it is fixable. Since I have not been through the radiation yet, I can't give you a first hand account, but the simple answer to your question is yes.
0 -
Thanks inLA! What kind of reconstruction did you have if you don't mind me asking! There is still so much undecided about my treatment, the surgeon was talking about using my own fat for reconstruction. If I even have to have a mastectomy, they are still hoping for a lumpectomy.
0 -
CindyT - I have silicon implants with alloderm. And actually, I really love my new boobs. The nipple healing is a bit slow, as the incision was just underneath the areola, but it looks like I will be able to keep them. I looked at saline implants but my PS said that there is more of a chance of those rippling and that they don't feel as natural. I also entertained a DIEP flap (which is where they do a tummy tuck and move that fat to your breasts) and met with someone who had that procedure done. Her breasts looked great and she did have a long scar under her abdomen. I was told this is one of the better surgeries if one is going to undergo radiation but I opted not to do that because I am sensitive and didn't want to introduce another area of trauma. In the end, I am glad I chose what I did because, like I said, I love the way everything looks. Plus after my surgery, I had a hard time sitting up on my own and had to really use my abs. I cant imagine what it would of been like to not have access to those muscles.
Just know that whatever you choose will be the right decision for you. This is a daunting process and at some point it will just become clear to you what you want. I will send good thoughts and hope that if lumpectomy is the goal, that you are able to do that.
0 -
cindy - i had DIEP (tummy skin and fat) - and am very happy with it.. the initial process is immediate and they look and feel real (plus a tummy tuck)... Beth Israel has a movie about it that helps explain it very well...
0 -
Thanks for the info, so glad you are both doing well inLA and Just V! It is turning out to be a longer process thatn I expected. Right now I am on Arimidex to shrink the tumor, it is shrinking nicely and they are in no hurry to operate, the smaller the better of course. So surgery probabaly won't be until February, but I want to know all the facts and hear about others experiences. It is a daunting process. There are still so many unknowns which is hard. Thanks!
0 -
I went the NSM and TE route and am 15 weeks post exchange surgery. I did have healing difficulties associated with the methylene blue dye and lost part of one nipple and some adjacent tissue to necrosis. The other nipple came through fine. I just posted some updated photos on the picture forum...
0 -
I can't seem to find the picture forum?
0 -
Thistoo- How are you doing? I hope we have not offended you with our concerns and comments and that you know that we are just concerned for you...Hope you are feeling ok!
I am back from my oopharectomy surgery and am resting pretty comfortably at the moment. i took 800 mg of motrin around 3 pm and it just feels like I have bad cramps and did a million sit ups at the moment. If this is as bad as it gets; I will be very psyched! I think having the NSBMX has actually increased my pain tolerance and I don't notice pain quite so much anymore. The Dr said everything looked good and we will go over the pathology when I see her in 2 weeks. Meeting with Onc on 12/23 to determine which pill to take. Most likely aromatase inhibitor.
I am a bit sleepy so will read everyone's posts later; have a great night!
0 -
Hi Cindy - The picture forum is moderated by a few BCO members, but it's not attached or affiliated with this website. You can send Lilah, MBJ, or firni (and there are a few others who might jump in here) a PM to request access. Security is a concern so you have to have quite a few posts under your belt here first (I don't know what the magic number is).
0 -
Hi girls,
Sorry was away for a bit. My two got sick with high fevers since yesterday so we have a bit of a mayhem here.
So I went to see my ps on Mon to see what's going on with my nipple. When they took off the dressing, it was weird looking sight with a lot of oozing and my purple nipple almost turned to black. I thought well that's it. Then my ps decided to "scrape" it by rubbing a wet solution with napkin on the nipple and he managed to scrape some from around the nipple and some new pink tissue was reveiled which he said is a good sign. What he also did was poke a needle into each nipple to see if it bled, and it did and he said it's also a good sign because obviously if there was no blood supply to the nipple, it most likely would not bleed a fresh looking blood. My incisions are still oozing but dont look infected but he did put me back on antibiotics as a precausion.
Here is a weird thing - I always seem to have pain at the nipple and incision sites, feeling the cuts and all. yet when I go to see my ps and he goes as far as to poke needles in my nipples - I have o sensation. Maybe I am having phantom pains but boy does it feel real. So seeing ps again tomorrow as he is keeping a close eye on me which I like.(Again, for others that read this - I am 2 weeks out of my prophylactic bilateral nipple-sparing mastectomy with "one-step" immidiate impant reconstuction)
Thank you girls for your responces Kate33, Amsk, Joyh1109, Fire-Dancer & Ginger48, I know I am nuts and now trying to take it easy although its so hard specially when kids are sick and I wanna be there for them. I am resting more now, so thanks. Appreciate your honesty as always
As for pain meds, agree with all as well that it's too crazy to be without them. I had similar experience after my c-section where they would not give me anything more than Tylenol and I hept on arguing with nurses that it doesnt make any freaking sence to give me medicine that people take for headaches - after a c-section. Definately not the same. I don't know, I guess I am not confrontational so when doctor says - "You shouldn't need it anymore" I feel bad for asking.
Amsk - So how did your Tues appointment go?
Fire-dancer - Happy Birthday! What a crazy coincidence to have surgery on your birthday. Thanks for sharing your experiemce with us, it truly helps.
Congrats and best wishes to Hurleygirly! What a great story for others to know that there are things to look forward to after the treatment.
inLA - Sorry for your drain still being there. It is a bummer, I was so looking forward to mine gone and was borderling to take it out or not, but I kept on telling myself that if ps keeps it, its for the better but just an annoyance. You had you surgery a week before me if I'm correct. Fingers crossed for your nipple, and mine ;-) Does he let you hkeep it open? My ps constantly puts neosporing and gauze over mine and then seals it with this plastic clear skin-like bandage that I can't take off myself and it drives me nuts that I can't check on it daily.
Ginger48 - So glad your surgery went well. I don't know if I missed but I didn't know you are having this done. Sounds like the pain is manageble and that's what I thought too, that probably after NSBMX and reconstruction, oophorectomy would not be as bad is everything goes ok. I am planning on doing this as well once I am over 35.
Ella1998 - Thinking of you.
0 -
Also girls,
How and where does everyone sleep? Nights drive me nuts. I am a stomach sleeper and it's impossible to fall asleep on my back. I was thinking of finding some foam mattress and cutting out two holes for my implants to hang into so I can sleep on my stomach.
Not even joking, just need to get out and find one of those matress covers with memmory foam and proceed with my plan. Otherwise I am stuck on the couch which drives me insane. 0 -
ThisToo- A lot of women sleep in recliners while they're recovering. I found if I kind of propped myself up with a few pillows, and then put one under each arm it kept me from rolling in the middle of the night which hurt too much. I'd also try to time my pain meds so I'd be good and sleepy. Sorry! I know how hard it is when you're used to sleeping in a certain position. Love your plan, though! Good luck!
0 -
Thistoo- I am sleeping in the recliner although I am hopeful to get into bed with help from the lymphedema specialist who is working on my shoulder pain. It is my number one goal as I have pretty much been in the recliner since June 22nd except for a few weeks in September and October when I tried the bed and was absolutely in pain all night long.
You laugh about the foam mattress but I was going to massage every week when my TE's were giving me muscle spasms and she had a wedge that had breast holes cut out of it so I could lie on my stomach on the massage table. I wonder if you could make something similar out of the wedge pillows people have gotten to prop them up in bed? I think someone said they got it at Bed, Bath and Beyond...no idea of cost. Does your surgeon say you can lay on your stomach? Mine said it was ok for massage but I don't know about all night long. very creative idea though!
0 -
Hi girls, I saw my PS yesterday and told him that i maybe need radiation he said if you need you should do and will see what happened. He said i am healing very well and that next my appt in three month, I am 3.5 weeks from BMX. Also I just need to push my implant closer together or use tight bra , my body push them outside . If anyone have the same problem? Can someone suggest any bra that i can buy? Now I can do exercise. I am feeling pretty good , no pain.
0 -
ThisToo - I actually change the dressings on my nipple twice a day so I get to check them out daily. They are looking better but still seem to be taking forever to heal. I don't feel 100% out of the woods with this one but close. Will keep you posted and will send healing thoughts your way...In terms of sleeping, I wonder if a massage pregnancy pillow would work (just noticed the Ginger48 mentioned something about this). It's what massage therapists use for pregnant women and they normally have holes cut out. Just a thought...And yeah, the drain still stinks but you make a good point about its being there for a reason.
Ella1998 - I woke up from surgery with a bra from Marenagroup.com. I liked it so much, I actually bought two more. They are not the most attractive but they do hold everything in nicely. They have a ton of options but the ones I have are the surgical bras (B2). Hope this helps.
0 -
Hi girls,
Quick update: Just saw my ps and nipple not viable, necrosis - going into emerg. surgery in 1 hour. Implants out, maybe expanders in but not sure because I might have puss around Alloderm and left breast nipple to be removed along with surrounding tissue. Don't know how this happened as I was on strong antibiotics since surgery.
I'm 2 weeks post op nipple sparing prophylactic mastectomy with immediate Alloderm reconstruction.0 -
ThisTooShallPass - So, so sorry to hear this news. My heart goes out to you. I don't know what else to say except for today's surgery to go smoothly and to get you healed up as quickly as possible. Best wishes!0
-
ThisToo Thinking of you - sorry to hear your news. I wish you a successful surgery and fast recovery. You'll get past this - please keep us posted.
0 -
ThisToo- So sorry to read your news. I know how disappointed you must be and are probably feeling overwhelmed right now. More times than not this whole thing never seems to go as planned. Just try to focus on your healing right now and when you're healthy and strong again you can address some nipple recon strategies. They are doing amazing things these days with different techniques to recreate the nipples. When you're up to it there is a member on here who can give some advice. Her name is FACECRAFTER (yes, all caps) and she's very helpful. Know we're all here for you. (((gentle hugs)))
0 -
ThisToo - My thoughts are with you. Please do continue to keep us posted.
0 -
Hi im very new here ..i have recently found out that i have the BRCA1 mutation..I have a very strong family history of cancer in my family a grandmother who passed away in her early 30s and an aunt who had a mastectomy due to cancer in here early 30s..i myself have had my own issues with my breast.and have been sent to a specialist.i do not have the cancer yet im 32..my docter sais it would be in my best interest to have a nipple sparing mastectomy..the cancer in my family is a very aggresive and fast moving cancer..I have 3 children that i would like to be around for..knowing this could hit and hit hard scares the crap outta me..i am considering this but am very very scared ...i would like it maybe anyone that is going threw this or already have maybe some input on my situation..i have spoken to a few that reccomend that i have the mastectomy done but its not making it any easier..I look foward to hear some insite on this and im so glad to have this site avalible to me...
0 -
Welcome shawna32 Sorry that you are joining us here, and to hear of your family history and BRCA result. My story is different than yours as I have had a cancer diagnosis, however I am one month out from a nipple and skin sparing double mastectomy, am happy with the results and feeling good. The surgery is no walk in the park, but is certainly do-able. For me it continues to be an easy and fast recovery. I know of several women on these boards that have had to make a similar decision as yours. I hope that you find comfort in learning the journey of others that have walked before you. Please let us hear from you ~Joy0
-
Hi shawna32 , I have strong family history and i am BRACA mutation. I was diagnosed with DCIS in August 11 and had NSM with one step reconstruction silicon gel implants on Nov 10. I was very scared , but right now i am very happy that i made this decision, so I don't have to worry about cancer in the future and result is very good just need to used to implants.
0 -
This Too - I'm very sorry to hear about your complication. I had to lose my L areola that was spared, due to a different reason (DCIS being too close), so I can empathize with your situation. Hugs to you - you will move forward, but it takes some time to adjust.
0
