Nipple Sparing Mastectomy with immediate reconstruction
Comments
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PB, I'm glad you came through surgery okay. You will have to keep us posted on your progress.
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PB22, I am sure you are going to look fabulous! You can take those Arnica pellets after surgery and they are supposed to help. They taste like candy actually and can be found at any Vitamin store. You can also buy the topical which smells like icy hot but you have to make sure you don't place it in an area that has a cut. It may help when massaging! A lot of enzymes found in fruit, such as pineapple or anything with Vit C should also help with swelling and brusing. Wishing you the best!
GAgirl, Yes it is a relief and I feel like I do have some closure now! I have to ask you this because my bs mentioned that if your nodes are clear that you usually do not need chemo. Your nodes were clear though right? I was reading other posts too about how nodes are even tested or is protocol even when doing the other side for a mastecomy that is not known to have cancer. My one cancer free side was removed but no nodes taken and I am glad that they didn't because that side was totally beinign in the end. I guess it all depends on the bs and the oncologist. I am just wondering because I had brought up a "what if some invasive cancer was found in the tissue following the mastectomy" awhile back to my bs and he said that further treatment would be unnecessary if nodes were clear. I was thinking about that when you wrote about your final path results. I also read a lot of women who decide to go on Tamoxifen after their double mastectomy and I am confused why they would do that since it would be such a minimal help in reducing a liklihood of cancer returning and yet has so many other side effects. I know you aren't going on that hormone but I just wonder why their oncologists push those women in that direction! You are right though that this won't keep us down. In fact, our boobs won't ever go down...they are perky for life...hahahah
Mandipandi, Girl, you will have to keep me posted and I will do the same. I just measured myself today and realized that I am not even a 34 but a 32! I haven't had a fitting since college and I don't get how my ribcage shrunk but I do indeed have a 32 (28+4 which is the "rule") rib measurement. I so wonder where 300 ccs are gunna bring me out at! What a trip! By the way, I am totally going high profile...my ps won't even use anything other than high profile. She said that we need all the projection that we can get! (=
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hurleygirl~ Good question on the post-op treatment; the same one's I've been asking for 2 wks now. Whether to take the chemo or not. There is no clinical data on how to actually "treat" 8mm of invasive bc with no postive nodes and clear margins. The real kicker in my dx is my ER-/PR-,HER2+++ status. This puts me in the 20-25% catagory of "high"risk. The concensus among my Dr.'s when they took my case before tumor board was to error on the side of caution and treat it as if it were 1cm...this makes it fall under the umbrella where there is plenty of clincal data on how to treat this kind of bc: TCH x 6 @ 3 wk intervals followed by herceptin for 1yr. I understand about the chemo. I have more questions now regarding the regiments of chemo. Can I take weekly TC x 4 followed with herceptin and do just as well??? I'm not sure...I have an appt. scheduled for June 1, for a second opinion. It's all so over-whelming!! Tomorrow is my port placement surgery. I wish I didn't have to have on, but I think I will eventually have to have on in the long run, might as well do it know.
On the positive...had another fill today...the girls are back!! Whoohoo! Hahaha! I'm totally convinced my PS played with Barbie's when he was a kid! He is WAY to good at his job! I'm not complaining, by NO means! LOL! I'm trying so hard to stay positive...by the end of summer, early fall...this chemo crap will all be over and I can get back to being just me :0)
Keep me posted on how your fills are going...you and I are about the same size: I'm 5'4", 106 lbs. so far I'm up to 175cc. (they feel like rocks! ahhhh)
Take care....
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GAgirl, Gosh I am so sorry you have to basically way the odds and make a choice like that. I know you probably have already done this, but when I was diagnosed I actually met with several oncologists to get their opinions. Thanks god they all agreed and spit out the same prognosis percentages and things like that. Sometimes you never know if one doc will say one thing and the next will completely contradict that! I went to town researching like a maniac in which my husband kept telling me I was driving myself nuts, but honestly I became so armed with useful information that helped so much when discussing certain aspects and concerns about my particular situation. I hope it all goes well for you girl! Keep letting us all know how it all goes. I have a coworker whom had a mastectomy 20+ years ago who had to do chemo for a year back then and she said that she did really well with it and never felt sick. I hope whatever you end up doing, you will stay healthy and make it through with flying colors!
The fills are nice when you see those results! I can't wait to get another one myself! Other than a small ache during fill up, my 100cc fill up was fine..no pain. I guess everyone is different. 100ccs though per fill and I will be done in no time! Yahoo!
By the way...I have to post this because it drives me absolutely nuts. Certain people I know say the dumbest things to me that I smile at when they say them (just to be polite) but DRIVE ME MAD. I hear things like, "How big you going? You should go porn star boobs" or "well at least you are getting a free boob job". What they hell are these people honestly thinking? Sure, we all want to look good in the end and since we have to deal with this blow, maybe add a little more on than what we had, but to think we are all just getting free porn star boob jobs is so rediculous and ignorant. UGH! Sorry..I had to vent. I have heard this from both males and females. REDICULOUS!
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hurlygirly: Those comments are some that are fit for the "Dumbest things people said or did" thread! How rude can some people be!
Nice to hear some input on Arnica. It sounds like some of you have tried it. I was given some when I first diagnosed by someone who had cosmetic implants and used them but I was too nervous to use them.
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Hope all of you NS sisters are doing well. I got another fill Wednesday, so I am now rocking out 300cc in my TE. This fill has been real fun as I can now kinda feel my nipple stretching out and a real pulling of the muscles on the cleavage side. It also seemed to set of the explosion of nerve action in the whole breast. It's like lightning going from my chest..right to the nipple. It's really weird, but it means some feeling is coming back. Last night I was doing a blow-out on a client and literally had to stop and lower my arm...I was just like.."whooo baby" . The nice lady in the chair just smiled and told me " God Bless You for Living On"
How Sweet..
I also sit here wondering what bra I am gonna try to put on today...??? I think I need a left A and a right D
do they make those...lol0 -
Hi ladies,
I'm sorry I'm falling behind on threads, been resting a lot. I had to have a surgery to close my wounds and replace one of my expanders last Friday. It's doing well and it puts me back 4 weeks. I can't get any fills until then. I've enjoyed reading through the threads and catching up on all of you. My dr mentioned about putting coco butter with vitamin on the scars, has anyone here done that? or what did you use for scars? Oh, remember the black nipple I had. I lost part of it. He took the black part off in surgery. On a happy note they did an oncotype DX text on me and NO CHEMO!!! Just tamoxifen...when I'm feeling better!
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hurleygirly- I think someone should write a book called, "What NOT To Say To Someone Going Through BC". There is a thread called "Worst Thing Someone Said To You" under the forum- Help Me Get Through Treatment. Some of the postings are unbelievable. I can't believe some people are that clueless! I've also gotten the free boob job comment.
bcincolorado- I've used Arnica for other procedures and it does work really well. It's over the counter so I wouldn't be afraid to try it.
twirlandcurl- I know what you mean about the nerve sensations. I didn't like it at first but then I realized, like you that it was a good thing and I was getting sensation back. When I first did my fills I didn't even feel the needle going in. My last one hurt like crazy! I never thought I'd be happy about pain!
sweetie2040- Glad your surgery went well but sorry about the set back of 4 weeks. But no chemo is awesome!!! As far as scars, my PS gave me some kind of tape that I put on the incisions that was supposed to help. It was great because I put it on and left it on for 7-10 days (even through showers) and then replaced it. I can't remember the name but it's made in Sweden. I have seen a lot of women posting about something called Bio-Oil that they seem to be having good luck with. I think whatever you put on you are supposed to massage the scars several times a day. (The reason I liked the tape was my PS said you didn't have to massage the scars while wearing it.)
Hope everyone is having a great holiday weekend!
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sweetie, Welcome back and that is great to hear that you are doing well. My ps told me that anything you buy out there made for scars will work but a few months ago following my lumpectomy, I took a bath in cocoa butter and vit E oil and my lumpectomy scar is barely visable 3 months later. I also did some research back then and found all this talk about cocoa in general (100% cacao powder with flavanol) and how in studies, it was found to even "thicken the skin". I went to Whole Foods and bought some. If you like dark, bitter chocolate, you will like this! You need to add some sweetener but I drink this now when I went hot chocolate! I don't know if it works but I won't pass on any type of chocolate...and if it works, even better! DOUBLE SCORE!
Here is what i found on the internet: "cocoa butter's moisturizing properties improve the elasticity and appearance of skin."
Here is a link with one article about the cocoa: http://jn.nutrition.org/cgi/content/full/136/6/1565
You can also just google: cocoa with flavanol, skin thickness
twirlandcurl, Just wondering why your ps is expanding one so much beyond the size of your other one? Are you going to get the other one enhanced to match? Glad to hear you have some feeling coming back! Nice.
bcincolorado and Kate, Yes, it's unbelievable how (I will be pc here) clueless people are. My husband tries to make me feel better by saying "They probably feel uncomfortable and just don't know what to say". I actually responded yesterday with a "I don't want to look unproportionate" to which was answered by a "why, don't you and your husband want them to be bigger?" I then said' "Actually my husband is a "butt" man!" Hahahaha... I mean what is it to this guy what size boobs I have...I mean c'mon! UGH!
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The rude comments remind me of when I was pregnant and everybody thought it was o.k. to touch my stomach- even strangers. Now they feel it's o.k. to talk about my boobs! Hey people, boundaries here, watch it!
When I was diagnosed one of my friends said she couldn't understand why I was so upset. She said, "I don't mean to be insensitive, but you know this isn't going to kill you, right?" Now my DH and I use that comment whenever things are getting tough we just turn to each other and say..."Yea, this sucks but it's not like it's going to kill you or anything" and we totally crack up. Aaah, if she only knew that her insensitivity provides us with comic relief!
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This is kind of off topic but I just read a study today that said women who received a particular kind of pain med, called ketorolac, during MX had a lower rate of recurrence than women who received different meds. The info is on medicalnewstoday.com and put in "pain meds mastectomy" and it will bring up the article. Just thought it was kind of interesting.
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I heard the same thing Kate, as well as basic Aspirin! I saw that study that came out around Feb stating that the NSAID type of drugs following mx, lowered the rate of reccurence of bc. Aspirin is the wonder drug I swear! And I have been taking ibuprophen all these years....Doh!
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Gulp I am so sad to hear of your loss. I know losing your Dad is one of the hardest things in life. It has been for me. I hiope you have peace knowing you were at his bedside when he passed away. I hope you are able to get the rest you need to get through all of this.
Hugs, Ruthy
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As far as nerves regrowing I know they grow slowly and my BS told me to expect some "sharp" pains from time to time and they could last a year. Everytime I get them I just keep telling myself how fortunate I am to have some feeling in my mx side.
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hurleygirley..yes I am having the smallest implant available put in my good side. Being very small to begin with, my PS said there was no way they would match without augmenting the good side also. I might even have to have my TE replaced with another one that is larger. Will find out for sure next week at last fill for this one.0
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Hello Everyone! This is my first time to jump in - I am MAGOB's sister who is having a prophylactic BMX on June 30th. I am the single mom of a 9 yr old son and I work full 50 hrs/week. I am going into this scared out of my mind, but even so, knowing I do not have near the strength to go thru what my sissy did this past year and hold down a job-keep the family going. The fear is overwhelming to say the least. Stupid things, like I will be the one to die on the table and my child will be forced to live with my ex! Because of all of you I was able to tell my Dr. that I wanted the "middle of the road" implants-not the very hard "gummies" Pls forgive, I still don't have the lingo down. I am trying to get my ducks in a row..but need to know about the post surgery needs. My doctor said no compression..what in the heck do I need to get at the drug store? Where did you all find the special tops for the recovery time? I thank you all so much in advance.
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I used the cocoa butter and it seemed to help keep things soft.
My doctor did not take my auxiliary nodes on the prophylactic side.
DoubleD, Welcome! I have to laugh at you thread name, my father-in-law likes to call me that now. As far as the tops go, I was sent home with a mastectomy bra from the hospital. It had pockets to hold the drains. I did not wear it long (maybe a week), I liked my sports bra from JCPenny's the best. Make sure you get a couple of sports bras that zip in the front. You may need to go a size bigger to accommodate any swelling you have. Also, get a few tops that button up, it will be hard for you to put on clothing over your head. I would have some antibiotic ointment on hand and square sterile pads to put over your nipples. You will also want some thin pads (panty liners) to protect your incisions from getting rubbed by your bra. A lanyard comes in handy to hold your drains if you do not have a mastectomy bra. You can just clip then onto the lanyard. It works great in the shower. Any other questions, just ask, I know someone else will chime in with some good advice.
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DoubleD: Welcome! You should check out the thread "Before Surgery, During, and After" which has a packing list and ideas of things others have used/needed at home after mx. There are some great ideas there. One big one is to fill your pain meds before you have surgery. I wish you the best wtih your surgery.
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bcincolorado and TNLady...
Thank you so much! I would never have thought about the things listed in the other thread. You guys are the best!
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DoubleD, love the name too. When you fill your pain medication , request non-child proof caps so you can open yourself. Small pillows, wedge pillow, or rolled towels to tuck under you in bed. It will be difficult getting up on your own. Back scatcher at bedside. If you have heavy items like detergent, portion it into something smaller so after your healed and you can do laundry, it will be easy for you to lift. If someone is shopping for you, buy your milk in half gallon sizes instead of the heavy gallon size. I used self stick sanitary pads and panty liners on the incisions as they are cheaper than keeping up with the other. The sticky side held in place on the sports bra. I even used them on the back where the elastic of the surgical bra was irritating me.
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Welcome DoubleD- Another thing I would suggest is stocking up on your favorite way to hydrate. The pain meds really dry you out and make you constipated which just adds to your discomfort. So really slam the liquids- gatorade, vitamin water, etc.
So glad you joined us here but sorry you have a reason to in the first place.
Kate
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DoubleD, Welcome! I just had surgery a little over 3 weeks ago and what I found helpful was a wedge pillow which I bought off of Amazon. I bought a camisole that held the drains but I never could use it because my ps wanted me to wear the ace bandage AND the surgical bra (which was a velcro halter top basically) until my first fill which was 18 days later. My ps wanted compression (so no fluid could set it) for that long so I lived in the ace bandage plus surgical bra. After my first fill, I was told I could wear any camisole or sports bra or even go free as a bird..or I should say boob! I just bought a $5 wirefree stretchy, thin bra at TJMaxx a few days ago which is working out great. For $5, I am going back for a few more! (=
Also, I was not allowed to shower until my drains came out, which for me was only 5 days after surgery. Seems like every ps has their preference!
I showered before and still at this time, with antibacterial shower gel and/or soap. My incisions were covered with a type of liquid skin glue so I didn't wear any other covering and in fact, my glue is STILL on.
Kate is dead on with the liquids and make sure your doc gives you some stool softeners.
I was a paranoid nut before surgery, so I bought Arnica topical, Arnica pellets, cocoa butter, Vit E oil, Vit C, Omega 3s, bacitracin and consumed cayenne pepper. All I can say is that recovery has been (knock on wood) surpisingly good and pan-free, so maybe there is some validity in these remedies! Just don't take Vit E BEFORE surgery!!!!
Good luck with your surgery and coming from a insanely anxiety-filled person prior to surgery, all I can say is that the "unknown" was more painful and torturous than surgery itself! Oh and take all those pain killers in the hospital. Delotted was my personal fav! (=
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PB22, Kate33, and hurleygirly: Thanks so much for the advice and support! DoubleD just came to me as my first and last name begin with D. I am just trying to maintain what God gave me, so I am not even close to a DD! :-) I am trying to collect the things you all found helpful. I need to find out why my PS said "no compression." Hmm. I guess the mastectomy camisole with drain pockets will be the best then. I am trying to guess just how much I am going to be able to care for my 9 yr old son the first two weeks. Were you all able to cook, pack backpacks, do laundry, etc during that time? Hurleygirly, I cannot believe your drains came out after 5 days!!! Wow, you set the bar pretty high! So glad to hear that your surgery and recovery went so well! You know, I feel a little out of place as I do not have a cancer diagnosis. My sister, MAGOB, just went thru all of it last year, and I know I could not go thru what she did and work and take care of my son. My family history tells me it is just a matter of time before it happens to me, so I chose the prophylactic BMX. Thank you all for including me!
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DD, I think your PS wants everything to fall naturally with gentle support. Mine didn't want compression or any sports bras that push you up. I'm using the champion brand that has spandex support but does not compress the breasts together. No to all the above. You will be resting and not lifting or you will feel a pull at the incision and drain sites. It will be difficult to lift your body and you will find that every move you make will put pressure on the drains. Your going to need to arrange help for you and for your son.
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DoubleD- I agree with PB22 you'll definitely want someone to come and help you but everyone is different. I was afraid it was going to be so bad I couldn't even lift my arms about my head to get a bowl out of a cupboard or blow dry my hair. I didn't have much of a problem at all. You just have to be very careful not to stretch or lift too much. My biggest struggle was the fatigue. Even just making dinner was overwhelming for the first few weeks so my sister stayed with me when my husband was out of town. Is there anyone who could stay with you?
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Double D -
I too feel a little out of place here as I don't have cancer (atypical lobular hyperlasia), but decided to have a nipple sparing, prophylactic masectomies, surgery was on May 6th. Everyone here is so nice and helpful.
My doctor said no lifting anything over 5 pounds and no lifting my arms above my head, hopefully that will change after 4 weeks, no showering until drains were out (they came out in a week) -- so have some wet wipe things to use. I woke up in a surgical type bra that he wanted me to wear - Dr. did say a sport bra that wasn't too tight or too loose would work, so I got the JCPenney Sports bra that zipped in front (called underscore), and I found some for $7 at Walmart that closed in the front with little clasps - dr said those were fine.
Don't be scared as I found the surgery to be not near as bad as I had feared. I stayed one night in the hospital, was on pain pills for 3 days and then switched to Tylenol - I felt great - but did tire easily. I think you will do fine.
Question for anyone out there - it has been 3 1/2 weeks and I still have a scab over my nipple - I have been hot tubbing etc, but they just don't seem to come off - anyone else have this problem?
Thanks everyone for their suggestions and advice!!
Valerie
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Hi Ladies~ Wow what a week! I went back to work on Tues. worked my full schedule-3x12's & had my port placed on Friday. No turning back now...the chemo train is slamming full speed ahead! June 11th is right around the corner. Tomorrow is my appointment for my second/third opinions. I am hoping to find peace in the answers provided for which chemo regimen is best. This has been the most difficult decision as of yet.
Post-op recovery is going incredibly well. My scars seem to be lightening up everyday and the fills aren't bad at all. Actually, it's fun to "see" progress every now & then! Although they we're able to do skin-sparing, I am very small & the skin is tight. The TE's will take awhile...slow & steady wins this race! Now that chemo is taking center stage, I won't be having to think about rushing for my exchange surgery until well after Oct. Kind of discouraging, but I can't dwell on things I can't change.
DoubleD~Welcome...you have found a place where encouragement & strength flows freely! Let me be the first to say...Venting is allowed also :0} I've done my share over the past few weeks. You are among "sisters" here. I have been able to find a wealth of information and knowledge from these AMAZING women. You won't walk this journey alone.
Still scootin'
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I am wondering if "compression" varies depending on A: size of breasts B: amount of saline placed in at time of surgery C: immediate implants v. expander route and
placement of incision. I am sure it just varies and your ps would know (they better know!) what is best!I was surprised to have full range of motion following surgery although Day 3 was a strange day, because I felt a really strong ZAP in my back shoulder blade (the side that my node was taken from) when I reached too far. Luckily that "ZAP" lasted at most a day and a half and never (fingers crossed) returned! I wanted to see what clothes I could wear too so I would say that maybe Day 5 I tried doing the clothes over the head thing and I didn't have a problem, nor taking it off either. I told my husband that I was going to try it and he was telling me that I need to chill out and not experiment with my pain threshold...I didn't listen but luckily did not have any problems. I was advised about not lifting more than 5 lbs too, but I did carry my 15 lb. Boston Terrier around somedays and I didn't have any pain. I would see what motions would move my incision area and what I found out is that nothing "visually" did! My incisions were super low, placed under in the inframammary fold and since I wasn't filled up much at all, nothing moved or strained my incisions. Now that I am filled up somewhat, I can see the incisions move with arm movement but at least now the incisions are closed. So, I would say that there are so many variables to predict what you will be able to do and not do. I saw a video of a woman whose incisions came open because she let her long, wet hair, following her showers, fall on her incisions which were near her nipples. Just make sure you keep the incisions dry after a shower.
For the drains, I got lucky with them coming out so soon..maybe because I seriously didn't have much to remove!
I had a very productive memorial day weekend...tredmill, a 10-mile bike ride and a 4 mile hike. First time trying to do some real exercise and I feel great!
GAgirl, I start work this week (Thurs) It will be strange to get back into it again! I cut my time off a week short because I was getting antsy around the house. I just wanted to get back into the swing of things. Hope they didn't pile a month's work of work up on my desk!
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Hi Ladies,
I am SO glad I found this site! I had a bilateral NSM (plus sentinel node), with TE's placed under my pectoral muscle w/alloderm and a bilateral salpingo-oophorectomy on March 24th. My incision scars are under my breast. Thankfully I don't have to have any other treatment other than the reconstruction process which has been paused for the last month because I have a patch (size of a nickel) of skin which is slightly raised and has lots of veins at the surface -anyone have or had this type of problem? This patch is half-way between my nipple & incision scar. My PS is monitoring it closely; if it remains the same she will resume the process, if not more surgery! I had 100cc inserted at the time of surgery & then 2 more fills of 100cc in each & am waiting for just one more 100cc. So, 400cc in each & I was a 36B, does that sound right to you ladies? I too find the TE's very uncomfortable especially the hardness under my arms, I tend to hunch my shoulders too & am finding it difficult to sleep on my back.
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Jassamine - mine are both different too! I've have 300cc in each & one nipple is higher than the other. My ps said she will fix them when she swaps out the TE's for the implants.0
