Nipple Sparing Mastectomy with immediate reconstruction
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Hi everyone. Sorry I dropped off at the doctor's office and never came back. Thanks for your thoughts and prayers. The oncologist is recommending tamox, not chemo. Even though my oncotype score is 22 his opinion is that because my tumor was very small and low grade, that the score is exaggerated in my case. He gave me a prescription for tamox which I haven't filled yet. I'm sure I mentioned that just a week before my surgeon told me that I wouldn't need to take tamox and my risk of recurrence was much lower. Anyway, again thanks for your support. twirlandcurl, welcome! Hope you were able to get your drains out. Thanks bcincolorado for your idea about joining the bottle O'Tamoxifen thread, good idea. Was it a hard decision for you? I think I will do that. Still haven't filled the prescription. PB22 - how nice to be on the beach in the sunshine! I live near the beach and I love it, but it's in New York City and the weather has been awful, rainy and dark and all I want is some sun to pick up my spirits. Glad to hear you looked good in your bathing suit. I remember seeing a photo in one of my breast cancer books and it had a picture of a sexy woman in a bikini (perhaps some of you have seen it) and her quote is something like, " I had a double mastectomy but you should see the attention I get on the beach!" I loved seeing it before my surgery. Fairportlady, sorry you are disappointed with the smaller of the two, but I have heard the same that it can take a while to settle. I'm glad you are more comfortable.0
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Gulp: no chemo!? How wonderfull!!!! I am so happy for you. I didnt even make the connection that you live in NYC till I just read your post: I lived there in my 20s while working at Sloan Kettering (yes, I get the irony that I worked there and now have had a bilateral mastectomy) anyway, love the big apple so much, visit often. You sound a little better, hope so.
I feel a little better too. I was having my daughter take a couple of pics for me to look at the asymmetry and she said you know Mom I think they look better today and I looked and had to agree. Jeeze sometimes I feel like a nut case: I was freaking out about one being too small and I look pretty good tonight: not as obvious as it was at first
PB: ahhh the beach. NICE!!!!
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Gulp, Great news!
fairport, I think this is just an emotional roller coaster for us, so don't feel like a nut case! They seem to change each day. You know it has almost been four months for me, and mine are still changing. I'm glad you are feeling better!
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Drain gone..I feel like a new woman,( except for the iron bra)
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Thanks TN
You are so right. You know, for me it has been harder emotionally post exchange than it was post BMX....what a surprise. It really is a roller coaster, but people like you help so much...its just so reassuring to know others have felt the same. My daughter dragged me to VS tonight: I got a new bra.... 34 C yay!0 -
fairportlady, what about it has been more difficult post exchange? Well, then again you had that traumatic experience with your blood disorder again. And then the symmetry issue. Those two things are very upsetting, maybe we all have a lot of hope for how we'll look after the exchange and then are disappointed? How is it looking today? I have symmetry issues myself. My breasts were always uneven and for some reason it never really bothered me. Then the 3 lumpectomies took a lot off the small one so of course they were more asymmetric. It seemed like every time I met with the PS he talked about how uneven they were. Now after my bmx, the "smaller" one is much larger than the other. I think he raised the "larger" breast up on my chest wall. It bothers me. I feel like he tried to even 'em out and ended up changing the one that was less impaired beforehand so it looks like it's too high on my chest. I go for another fill tomorrow. I don't know why it bothers me so much, I can already hear him pointing out that they were uneven before. I am rambling sorry. I am interested in knowing what's making this stage for difficult for you, fairport lady. It's funny that you worked in Sloan Kettering. I have worked in the hospice field for over ten years. I must admit I had the irrational thought many times when I was first diagnosed that I shouldn't have to deal with cancer because I worked in hospice all those years. I should have been spared! Not really but that was my magical thinking reaction.0
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twirlandcurl, congratulations on getting the drains out! I was so relieved when that was over.
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Hi all. I just quickly read through this thread. I will have to go back and re-read it a few times. I was diagnosed on 3/24. The first BS I saw (recommended by by GYN) was very nice and I liked him a lot and he went over all my options. I had not yet found this site and did not know what to ask and was just trying to take in all the information. He did mention the skin saving MX with DIEP reconstruction. (Triplet preg, plenty of extra in that area), My DH was a bit surprised about the fact that the nipples would be gone as well. He did mention that they were starting to do Nipple sparing but he didn't recommend it as he felt it wasn't fully backed up yet. He took blood for the BRCA test and gave me the name of some one at slone for a second opinion if I wanted.
Today I had a second consult with a surgeon at a different hospital recommended by a very good friend who works there. Having found this site, and deciding that a BMX was right for me, (I think I wrote more history in the 2010 thread) I went in much better prepared. I also liked her alot. She completely understood where I was coming from and That I understood I loose it all including Nipples. She said not necessarily. She said very few women are candidates and it could all change up to the last minute, but it was possible to save them for cosmetic reasons only. She also gave me a referral to a PS who I will meet next thurs. (I really like her as well.)
I called the PS the 1st doc recommended and they didn't take my insurance (My insurance doesn't have an out of network option.) So I have to call him back and see if there is a PS that he works with that does take my insurance or if its worth it to try to fight them (insurance).
So I have been researching the NSM now that it was presented as an option and do some more thinking. I do prefer the hospital the 2nd doc works out of as it is more "home" (Its the hospital I grew up going to) Plus both the BS and PS take my insurance.
I have to say $ is a big factor I need to consider. I have only been working part time for the past year and while I still get supplemental unemployment (took a year to find the part time job), It has not been enough. That coupled with the fact that my DH's work has been cut back so much, finances have been difficult to manage. Braces, Spring cloths, school activities, all times 3 gets tough to manage without the added stress of trying to decide what surgery to have.
At this point the only thing BRAC will Tell me is weather or not I keep my ovaries.
Sorry for the novel but its late, I'm tired and drained and just needed to "scream" Thanks for all the helpful information you have here. I need to go back and re read and take notes. I look forward to getting to know all of you.
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Hi Gulp
My experience is that after the bmx I was focusing on recovering from major surgery so I wasnt really feeling or processing what was happening . Then during the fills phase I powered through with fills weekly and was in a lot of pain and not sleeping well, so again I was focused on the physical aspects, not really the emotional. After the exchange I guess I finally slowed down and let everything sink in. You know how you wait and wait for Christmas as a kid, (or similar holiday) and when it finally came you were just a little bit sad and let down, even though you got everything you wanted? The blood stuff freaked me out too, yes. But let me say this: I think it is healthy and good to work through all the emotional stuff (just realized Im preaching to the choir, you are a hospice worker, you know!)But not only dealing with the diagnosis but the body image changes too... lack of sleep doesnt help either. (You will love love love how much better sleeping is after those terrible TEs are out!) You werent rambling, not at all! This is the place to express all that stuff, because this is the place people understand, and not only understand, they CARE! Oh and I feel better about my symmetry: they have already changed some just in a couple of days. My daughter noticed before I did! I get the magical thinking reaction you had too: I had that kind of feeling too: like hey Im a health care provider, I am not a patient! ha! 0 -
Hey ladies, Just wanted to let you know I'm scheduled for surgery. It may be possible for me to have NSM!! Of course they have to verify everything once I have surgery. I talked to the P/S and I wanted to ask you all, what type of implants did you end up using? silicone or saline? Did any of you have tear drop? also did sparing your nipple affect the choice of implant and the finial look? How did the Dr. balance everything out since the nipple was still there? Finally my dr mentioned sometimes they can save one and not the other, and what would I do in that case. i was thinking to remove both because otherwise it would be uneven, do you have any advice on that? Any advice on what I should be asking the plastic surgeon? One more thing I'm glad your doing good fairport and gulp and I can only imagine the roller coaster of emotions, I'm on it now and I haven't even had surgery. I feel like your the sister's going before me leading the way, I can look to you and what you have experienced to help me along the way. I know I will just as emotional when it all sinks in, at times this whole experience is so surreal!
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Sweetie: WOW! after all the investigating and persistence you now have surgery scheduled!!! Congrats to you!!! when is it????
Kathy
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Also: Whippetmom on the Exchange City thread is the implant expert and is very generous with her time .....she would be an excellent resource for specific implant questions
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Twirland, Woohoo on getting the drains out! I know I felt liberated when mine came out, they are so uncomfortable.
Mom2aej, Welcome to our thread! Don't worry about how much you vent to us, that is what we are here for. We are also here to answer any questions you have. So, does the PS you go to next Thursday do the nipple sparing?
Sweetie, Congrats on your surgery date! I have Mentor high profile silicone implants. I told my PS that I wanted to be about the same size I was pre-surgery, and he chose the implant that would be best for me. I am able to wear my pre-surgery bras now, so he did a good job with it. It surprises me, because pretty much he just asked me my bra size, looked me over, and chose the implant for me. I would check on the implant sizing 101 thread, like fairport recommends, Whippetmom is very knowledgeable when it comes to choosing an implant size. Regarding your nipple question, that is an individual decision, but I agree with you on wanting symmetry.
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Sweetie:, congrats on setting the date. I have mentor, high profile silicon. My PS decided based on the measurements he had taken. I told him I wanted to be the same but with a lift. I have found that after all the scraping I would like more cleavage and fullness. So will be changing them out while insurance still covers it.
Mom2aej, hi and we are here to help.
Fairport: great things are every so changing and the important thing is getting to catch up on sleep.
TwirlandCurl: took me about till now, almost 4 months not to feel the tightness in the muscle as you refer to the "iron bra".
Everyone have a Happy Easter, a time for new beginnings and how appropriate as we are all exploring ourselves.
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Gulp: Taking Tamox was a "no brainer" for me. My oncotype is 9 and my onco said adding chemo would only lower my recurrance by 2% but with the the SE of chemo you had to count 1% off that and for 1% it defintely isn't worth the risk of chemo. That was perfectly fine with me! So far the worst thing with Tamox (I started the end of Jan) is that I get hot flashes a few times a day and night and they wake me up at night and I often have to get up to cool down with an ice pack.
Sweetie: Congrats on setting a surgery date! I'm so glad you have found someone you trust! Let us know when your date is. I'll let you know what implants I'm going to get once I meet with my PS on the 15th.
May everyone have a wonderful weekend!
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Thanks for the welcome all. TNLady I believe the PS I am going to see next week does do the procedure as the BS said it was a possibility. I guess I will find out next week. I have to say this whole thing seems so surreal to me. I still can't get over the fact that I have cancer and will be going through all this crap. I can't wait to finish meeting with docs and get things scheduled so I can move past this. Of course in the middle of all of this my DH just got summoned for Jury Duty. The fun never ends does it?
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Mom2aej, I remember how overwhelmed I was when I was diagnosed. I did feel some relief when I made my decision on which course of action I was going to take, and even more so, when I had my surgery date. I think this period you are going through is the toughest mentally, or at least is was for me. Maybe your DH can get out of Jury Duty due to extenuating circumstances, have your DH call the Circuit Court Clerk.0
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Hi Ladies--good morning and Happy Easter. I have been following your board as I pursued my desire to have a NSM. You are such a caring group of women, and I would like to join your conversation. I finished chemo on Thursday--taxol/herceptin for 12 weeks, a study out of Dana Farber for a .5 cm Her-2 positive tumor. I also had a 1.1 cm er/pr positive tumor, so I'll be starting on a AI soon. And there was 8 cm of DCIS.
My mx is scheduled for April 23. I am doing unilateral with expanders and then silicone implants. I have been on Timtam's photo website over the weekend, which is such a valuable source of info, and I've learned so much reading your posts.
I love this website--this has become my community over these past six months since my diagnosis, and I look forward to participating with you.
Thanks, Joan
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Welcome Joan! I have a uni too (left) with TE in place right now. I didn't have to do chemo since I'm ER+/PR+ and HER2- and a low onco score but am on Tamoxifen now. I had surgery on January 7th. There are also usually threads for people having surgery each month too so you can all follow "progress" with each other. The waitinng for surgery is definitely the hardest part. You know everyone here understands and supports you in your journey!
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Hi and hope everyone had a good weekend
Welcome to Mom2aej and Joansf.....:) we are here for you!!
My daughter just left to go back to school after spending her spring break with me post exchange. I was smiling when she left and said Well you certainly had an unusual week having your Mom show you her breasts several times a day for observation and comment!!!! She was so funny: wanted to look one more time and said they really do look different than they originally did post op and I agree: the asymmetry I was concerned about is MUCH less now. Im noticing so many little things that are so much better now: I can open and close windows, wipe down counter tops, amazing how much we use our pecs....incisions still a little sore but all and all things get better every day
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Joan, So glad to have you! We look forward to getting to know you. It is nice to have a community of people who understand what you are going through.
Fairport, I'm glad you are progressing well. I know what you are saying about not realizing how much we use our pecs! I can do strange things with my foobs when I engage my pec muscles. Sometimes they have a mind of their own! LOL When I open up a pill bottle they both rise up on my chest, it looks very strange. I'm hoping other people don't notice when that happens. My daughter thinks it's cool!
I hope everyone had a wonderful weekend! I have this week off for Spring Break, but will be busy with doctor appointments. I see my PS tomorrow and my husband goes back for his six week check-up for his spine on Friday. We are hoping he will get out of the brace soon. I hope everyone has a great week.
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Hope everyone had a blessed easter..
I seem to have swollen up a bit..wondering how much fluid is normal after drain removal? I have a TE in place so I actually look "round" right now instead of the goofy expander shape. I am a A cup, so tonight my TE looks bigger and higher than my natural breast. It is not painful, but wierd. How much is too much?
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thank you for the welcome! I have so many questions...I scheduled by mx so soon after chemo in the hopes of being up and around in time to travel to boston for my daughter's graduation the first week of June (with a hs graduation the week before.) Can I ask how people felt 5-6 weeks out? Also, I have a family event mid-June, and I ordered a dress a couple of weeks ago. It's strapless (!). But since looking at photos, I realize that if the expander is riding high it will show, do you think? I'm thinking I should go instead with one of those dresses with the asymmetrical neckline (how fitting!) that would be bare on my good side but cover the one with the expander. What do you think? Also, how long before they'll do an exchange? I'm hoping for late June--that would be two months---too soon? (wishful thinking?). Thanks, Joan
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Hi Joan
reading your post I felt like you are a lot like me: I really pushed to "power through" the process.As far as how you might feel 5 or 6 weeks out, attending a graduation should be very do able.I will say though that it may not be a fair comparison because I did not have chemo, my surgery was prophylactic....does the chemo make you super tired? Another difference is that I needed a second surgery the day after the bmx for a complication (dont worry: it was unrelated to possible complications from the mx, it was due to a bleeding disorder) I tried to go back to work 6 weeks post op but was tired and sore at the end of the day so reconsidered and waited a couple more weeks. There is a big difference though between working 8 or 9 hours and attending events. I would just make sure you rest and dont push yourself too much but Im sure you will be fine. I just looked and from my bmx to exchange was 11 weeks, and my impression reading other posts is that that was pretty quick. I will tell you what everyone told me and they were right: be patient, and its a marathon not a sprint. The thing I learned is that each of us has our own individual journey so some things are hard to compare, like length of time from mx to exchange because it depends on the size you want to be and how you tolerate the fills. Your PS will be able to give you an idea of time frames based on your goal and his/her practice (some want a longer waiting period between the last fill and the exchange than others) I found it hard to figure my wardrobe out too much in advance because of my ever-changing size, but what a great idea about the asymmetrical off the shoulder dress!!!
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Twirl: My TE is round (all filled and I'm waiting exchange now) very large and moves around, like TNLady mentioned. I only have one, and am very self-concious about being "un-even" so I tend to wear baggy pretty blouses, no sweaters, so it won't be obvious to everyone. I know other people who can wear bras, but I just can't. I think a bra would help you to look "even" for your events. Strapless? Not sure. I delayed my 2 lumpectomies because of weddings and just wanting to wear what I wanted to wear. As I look back, I'm glad I did since I didn't have a fast moving cancer. Fairportlady is right....great idea to help with the "uneven" look.
Fairport: Glad you are doing well and recovering well and enjoyed the holiday with your daughter!
Joan: It seems to me that each PS does things a little differently. Mine wants me to heal up and finish stretching for 3 months after my TE fills were over. I finished fills early March. I will see him again next week for an exam so he can see how they are "sitting" and take some measurements and decide about implant sizing then and timing of surgery, which will be June sometime. Some women seem to have PS who do things at a faster pace. I think a lot has to do with how your muscles move to start off with and what other treatments you needed (if you did rads, chemo, etc.,) I was able to skip rads and chemo, but as much as I'm ready to get rid of the TE, am glad for the break in doctor appointments for a bit!
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thanks ladies! The surgery is in 2 weeks, still have to meet with the BS and PS to finalize everything. getting nervous but in a wierd way excited to get this going so I can get it over with!
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Hello everyone, so much to catch up with this week with you all.
Welcome Joan, I didn't have expanders so I'm no help there with the dress selection.
Sweetie, congrats on setting the date. Start buying your supplies ahead of time. Don't forget that back scratcher by the bedside. Get your pain meds filled and also ask for ambien sleep aide, helps if you are really uncomfortable to get your through the night. Rearrange your clothing to have all your front open shirts accessable!
Fairport, seems like all is healing normally for you now and you are on the road to feeling normal again.
TN: I know what you mean about using your pec muscles, I am very conscious of that as it sort of deforms. I was especially conscious of it when I was in a bathing suit and carrying a cooler and twist opening beverages. I get a big divot behind my biopsy side.
Today is my appointment with the PS to discuss changing out the implant for a wider one to possibly cover the divot and give me more cleavage and fill the big space between the two. I am also in more pain it seems these days, maybe from lifting more at the gym. I feel a burn alot and a pulling behind the nipple area. Is there ever a day that we don't think about this?
bcColorado, I am on the arimidex, hot flashes not too bad, but have pretty discouraging joint pain. Went off it for two weeks on what the docs call the drug holiday and it went away, now restarted to see if it gets better. f/u with onc in two weeks.
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Good morning, ladies! It's beautiful here in San Francisco! Thank you for the kind welcome, info and advice. PB22--I hadn't thought about the need for open front shirts--thanks for the head's up.
I saw my breast surgeon yesterday and picked his brain--he really takes a lot of time which is wonderful. He said that the PS might get away without using an expander because I would not lose much skin and because of the nipple sparing. But that is not what the PS had planned when I spoke with him, although at that time I didn't think the BS (GS?) would let me do nipple sparing because of the extent of the DCIS. My question is, did anyone have their implants placed at the time of the mastectomy?? I want to ask the BS to talk to the PS about it in advance.
I thought the expanders were to stretch the muscle as well as the skin.
Thanks, Joan
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Joan, I had my implants placed at the same time as my BMX. Yes, the TE's are are placed to stretch the skin and muscle over a slow period of time. So, as you can imagine, when you have immediate placement of the implant, you are going to have some muscle pain. To me, it was worth the pain, to only have to go through one surgery. I do have some stretch marks on my BC breast, I think due to more swelling from lymph node removal. Any questions you have, I will be glad to answer.
We had nice weather in TN today too, a high of 87. I think we have skipped Spring and have went straight to Summer!
I hope everyone is feeling well and having great week!
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PB : how did the PS appointment go??? I am just now ready to get back to lifting: I will have to see if that burning you talked about comes. OMG I miss working out.
Sweetie: I bet you are excited! That nervous/excitement at the same time is quite a feeling
Joan: I had my TEs placed at the time of BMX also. I think my skin was fine and the stretching probably wasnt needed for that at all (had gi-normous breasts when I breastfed years ago: think the skin remembered) but the muscle needed to be stretched for sure.
Such good advice: get the button down tops ready (I had none, bought a couple at Target) and Ambien helps a lot. The good news: I havent needed it at all since the exchange.
TN I want your weather!!!
Today was my first day back to work. I treated myself and bought a couple of pretty new tops and wore one today : it felt so good to be back to normal (a new normal to be sure, but still....) People were so nice, lots of looks to the breast area but who could blame them? It was funny: I wasn't shy about it at all.
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