Nipple Sparing Mastectomy with immediate reconstruction
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fairport and TNLady, thanks for the well wishes.
fairport, I love the comment about your mom telling you to stand up straight. Moms do know best.
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I just got home from the breast surgeon for my last post-op with her. I mentioned to her that there doesn't seem to be alot of surgeons doing the nipple sparing procedure. She said that they have been doing them for 10 years (she has for 3) and that more are done on the east and west coasts than in the middle states. She became interested in them and think they are a great choice - for the right canidates. See wants to see me yearly for checkups and I need to start examining my breasts after the exchange surgery. Looking for small bumps like a bb or pea. She doesn't think I'll have a problem, but if I do wants to catch it early.
She was so nice - I read somewhere that doctors like to receive thank you notes for a job well done. (When they are having a bad day they read over the thank you notes). Of course it is their job, but I think everyone likes to be appreciated. Just an idea.
I also told her that if she has any patients that would like to talk to someone that has had this surgery to feel free to give them my name. She keeps a list and was happy to add me - I didn't know this before - I should have asked - nice to talk to someone that has the same experience - that's why you ladies are so great!
I also need to schedule my 21 year old daughter an appointment with a good ob/gyn to have her breasts examined every year. She needs to start mammograms at around 30-35 years old.
Hope everyone is doing well... Hugs, Valerie
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Valerie- Will your BS order MRI's or anything or will it just be the exam? Also, just curious what everyone else is doing for follow up. My BS also told me about the self exams but we didn't talk about the follow up. She wants to see me in 6 months. Also, is anyone taking Tamoxifen, or equivalent, who had DCIS and NSM?
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Kate33 - No MRIs, I just see her next year for a manual exam and no Tamoxifen, but I had atypical lobular hyperplasia, not DCIS.
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Just an annual checkup/exam from either my oncologist, bs or both. No Tamoxifen. Tamoxifen doesn't have that much benefit when you get a mastectomy...it would be such a small percentage in being any help that the risks would most likely outweight the benefits you know? Thank god because I personally was so anti taking that medicine to begin with, unless I had absolutely no choice! Exercise can naturally lower your estrogen and can cut recurrence by something insane like 40% from what my oncologist said. Looks like I should hit the gym!
MRIs are scheduled something like every 3 or 4 years just to check for any silent ruptures in the silicone implants.
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Thanks hurleygirly! I didn't know that exercise could lower estrogen. Damn! I guess I'm officially retiring from the position of couch potato. I wonder if I can get that trainer, Jillian, to come to my house and yell at me.
I'm not doing Tamoxifen or anything else, either, but on another thread there is a 23 year old with DCIS who had a BMX and her BS is prescribing Tamoxifen to decrease her chances of ovarian cancer. Has anyone heard of this?
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Cutting alcohol also helps lower estrogen too. I wonder what is an acceptable amount of red wine we should all consume, considering it has so much other health benefits...? I like a good glass of red every now and then!
I just read up a tad on Tamoxifen for ovarian and it was basically a crap shoot, working for some and not for others (but that was actually after receiving diagnosis of ovarian cancer). I didn't see any real meat in what I found right now on what benefit to a BRAC + carrier, it would have.
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PB-22 love your comment about the big screen TV- too funny and so true!
Kate33 and Hurley girl- I was reading what you wrote about Tamoxifen. I had an ER invasive stage one cancer and had a bilateral, no nodes and my oncotype score was very low so no chemo.My Dr. says I have to take Tamoxifen. He said recurrence is like 15% but with Tamoxifen it is reduced to like 6-7%. Do you know if it is different if you have IDC compared to DCIS and that is why you don't have to take it? I'm not happy about taking it and I hate drugs and side effects. I do exercise an hour a day and am a healthy weight and try to eat healthy. I was told that women with ER cancer have to take Tamoxifen even if they have a Mastectomy. I was really disappointed and thought I wouldn't need it with that drastic of a surgery, but was told if there was any "stray" cancer cells it would get to it. I took the BRACA test too and it was negative so I'm really wondering how much of a benefit Tamoxifen is.
Kate33-I did hear that it can help protect about ovarian cancer, but can cause uterine cancer. There are lots of side affects too, that most people will have at least some.
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Sweetie2040, Hmnn...I guess every doc is different! I saw two oncologists and I had two choices: 1. radiaton plus Tamoxifen for 5 years or 2. Double mastectomy (no other treatment). With the double mastectomy, even a nipple sparing, both oncologists told me that I had roughy a 1% chance of ever getting a reccurence back. I thought those were pretty good odds and for no other treatment, I jumped on it! 15% seems like a very high rate for a reccurence with a dbl mx, even with invasive. I don't know of course, because I pretty much research DCIS all of the time! It doesn't hurt to get more than one oncologists opinion though. Actually...your story just reminded me just now....my own bs's wife has invasive cancer at the age of 42 and she had an ER+ invasive cancer as well. She chose radiation, lumpectomy and no Tamoxifen. My surgeon said that he would have liked to see her on it but that she did not want to take it. I believe that around the age of 50, she ended up having a total hysterectomy, so out went the estrogen with her ovaries! Anywho, I would just consult a few oncologists if you haven't already done so. I really was against the drug since you need to be on it for 5 years and that would have basically put me at age 41 to start strying to have a child. Now, I don't have to wait.
I will see what I can find out there about invasive and Tamoxifen following double mastectomy. Of course, I will probably find conflictiing studies as always.
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Sweetie2040, I also forgot to mention that a coworker of mine has an agressive estrogen positive breast cancer a few months after giving birth at the age of 32 years old and this happened 20+ years ago. She immediately had a unilateral mastectomy and chemo because I believe 3 or 4 nodes were infected. Back then, Tamoxifen wasn't part of the treatment protocol for ER+ cancers and so she never had it. To this day, she remains cancer free. She told me that she never thinks of it (bc) either. Just wanted to share that positive story with you!
P.S. She also has the same implant in there too...and it is saline! They just don't make em like they used to....
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hurleygirly- I was given the same choices (lump/rads/Tamox or MX) and the same supposed chance of recurrence (1%). I thought no chemo, no radiation, no mammograms ever again, no Tamoxifen or something equally unpleasant- sign me up! Given all the nasty side effects of Tamoxifen you'd think the BS would all be on the same page with this.
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I am reading now and it seems to be all over the map. Some docs like to offer it as an extra measure and some think it is overkill. Patients that get a recurrence who had not been offered Tamoxifen, are of course upset and furious at his/her doctor and those who have been offered the drug report the side effects and how much they would like to cease taking it it. I think it is all just a personal choice and doctors can give us a percentage and then offer us something that may offer a bit more protection and leave it up to us to decide. I don't think anyone, including our doctors, really know what the true recurrence rates are, nor can they, to an 100% accuracy, predict who would do best with a certain treatment and who would not. We take our chances, one way or another...with or without treatment. We just have to make the best decisions for ourselves BUT getting several opinions helps. I felt better having several professionals say the same thing. If they were on opposite sides of the coin, I would be concerned and second guessing any move I made.
Some people can live (invasive-cancer free) without doing any kind of treatment after being disgnosed with DCIS while others can elect every form of treatment out there and get hit with a recurrence down the road. It's a hard decision for us all!
For me, I am going back to an organic veggie lifestyle, cutting out all the hormone-injected, pesticide-treated food. Doesn't it seem like this is an epedemic these days? I swear we have all eaten into this, literally...or have popped birth control pills thinking they didn't have any side affects. No studies have really shown any connection but I have tried about 10 or more different types of birth control pills during my life, because every kind I tried gave me migraine headaches with auras that would cause partial blindness. Makes me think that my body was telling me something...like "Hormones are bad...very bad for you..stop now!" I digress but if I could do it all over again...
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Hi. I haven't been on in a while. First I wanted to thank you all for your condolences re my father who died a couple of days after my exchange surgery. I haven't been online too much since then. But I wanted to respond to the current discussion re tamoxifen. Sweetie, I think the reason your doc is recommending tamoxifen is because you have invasive cancer, not DCIS. I also was very disappointed when I was prescribed tamox. I was first dx'ed with DCIS and then only later found out I have invasive lobular ca in my other breast. With invasive cancer even if you have a double mastectomy there is still a chance of a recurrence somewhere else in your body, a few stray cells could have broken off before your surgery. With DCIS the cancer is contained and there is no or very little risk that it will break off and recur. Tamox cuts the risk of recurrence in half. There is a thread called Bottle o' tamoxifen which is great and very helpful. I was so frightened of taking tamoxifen but I have to say that I have had no problems with it. Many women don't have side effects and for many women the side effects go away after a little while. My oncologist said to try it and then we can discuss it if it is horrible but it really hasn't been.
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gulp- So glad you posted again! How are you doing with everything? Again, so sorry to hear about your Dad. I'm sure he is around you watching over you as you recuperate from your exchange. My Dad passed away a few years ago, too, from lung cancer. When ever I am struggling with something I ask him for help and I swear whatever it is gets easier. I still miss him so much but after a few years the pain of losing him has lessened. Hope you are doing well.
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Thanks Kate33. Sorry to hear about your father. It has been really hard. The whole thing with my father happened so fast that I still can't really believe it. I work in hospice and I'm used to dealing with death but of course not with my own family members. It happened so quickly and I wish I had more time with him. And the part with my surgery complicated everything because it was right after my surgery when I found out that he had a day or so to live. It hit me this morning in two months time I lost my breasts and my father. At first I was less preoccupied with my own self, didn't care as much about how I looked after the exchange, but now I must say that I am disappointed with how I look - I have a lot of ripples and it is freaking me out. The shape is okay but I don't like the rippling. The PS does acknowledge it and said he thought the gummy bear implants would probably help the problem but he is not part of the clinical trial but he could recommend me to another doctor. I am not sure if I am up to another surgery. He suggested I wait a while before making my decision. Part of me feels like I want to get on with my life and stop having surgeries and the other part thinks that I have been through so much I should be somewhat more satisfied with the results. For some reason I am more freaked out about the results now than before when I had the TEs.
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gulp- Hang in there. It hasn't been that long since your exchange and I have seen other women post that their ripples corrected on their own once and implants "dropped and fluffed". A good one to talk to is a member called "whippetmom". She is like the ultimate breast guru and queen of implants. She may have some words of wisdom for you. I wish we could get the gummy bear implants too. I don't know why it takes so long to get it approved by the FDA when they have been used for years in other countries.
I think the reason you are more freaked out, as most of us are, is that this is the surgery that is supposed to make everything all better. There is a lot riding on it and we feel we deserve it after all we have been through. I think a lot of women have to have adjustments made afterwards so you are not alone. I think you are doing incredibly well considering you're still grieving for your Dad- and your breasts.
Sending gentle (((hugs))) to you.
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Gulp: I am so so sorry to hear about your dad, you are in my thoughts. I too lost my Dad to cancer, it will be 10 years this father's day & I still miss him, but find it comforting talking to him as I can hear in my minds eye what he would say to me. The ache is still there but it's easier to bare. XO
Kate33: No Tamoxifen for me! At first my bs advised a lumpectomy with radiation & tamoxifen but then I tested positive for the BRCA so everything changed...
Hurleygirly & vmudrow: I'm at 350cc's in each so, right beside ya! My fills were paused for a while because of a skin issue but resumed last week with half a fill. I'm scheduled for the remainder & last fill of 50cc's on June 28th if my skin holds up! I don't know what type of TE's I have (must ask my ps next visit). I haven't a clue what type or size of implants I'm going to get either (I like the sound of the gummy's though)& think I'll have to consult with Whippetmom as I hear she is the 'Implant Guru'
It's been a little while since I was here because I've been spending hours on the photo site (thanks Timtam) looking for pics of skin issues hoping to find someone with a similar problem, no success yet though... I have taken some pics of my foobs & skin but haven't posted them yet, not a pretty site. :-(
Wishing everyone a nice weekend
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Valerie, That's so nice that you are willing to share with someone. It turns a negative into a positive. It's funny that you mentioned the letter of appreciation, I am a teacher and I do the same with student/parent notes. I have a folder for each school year and when I'm down I pull them out and read through them, it helps. My daughter is 19 and I plan on doing the same thing.
Gulp, so glad to hear from you.
Regarding the Tamoxifen: My Mom was diagnosed over 20 years ago and took it for five years. She was one of the fortunate ones that did not have many side effects with it. She had a UMX and to this day is doing great! She is 78 years young!
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Whew! So happy to hear that I'm not the only one who has put on weight since surgery but now it has to stop! I went for a nice long walk yesterday & my nightmare came through - yep, I fell flat on my face. DH was with me & he nearly fell trying to catch me, it was hilarious! No worries though as I didn't hurt myself too bad. I find that I'm a tad bit clumsy now, something I wasn't before this BC journey...
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gulp: Glad to hear from you again. Bless you for your hospice work too! What an important job and special calling you have.
I had exchange this morning so now am in a sports bra for the first time in I don't know how many months. Feels strange.
Take it easy irish. Don't over do the exercize.
I'm on tamox but also had invasive as part of my dx. I can live with SE to keep me from getting bc again.
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sweetie- I'm a little late chiming in but i just wanted to say that the reason the bmx wouldn't change the need for tamox is because it's not a local recaurrence they're worried about- the mx takes the odds of local rec. down to almost nothing but without other treatment you still have cancer cells lurking in other parts of yr body. Without chemo or tamox you would be getting no treatment to prevent mets! It's very different than the dcis, in that by the time an invasive lump grows in your chest, cancer cells have already settled in other parts of your body, and the removal of the main tumor can stimulate their growth. I'm not trying to scare you, but you should know why they want you to take this!
oh oops I guess gulp already said this. sorry! still here it is anyway.
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... Any opinons would be highly appreciated!
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Gulp: have been thinking about you and glad to hear from you. Count me as another who lost a Dad: it was 15 years ago this past April 19th: happened the same morning/time as the Oklahoma City bombing: lots of souls went to heaven that day. I bet I think of him every day even now. My heart is with you......I have rippling too, I think it is more noticeable because im thin. It did improve after the drop and fluff happened, but I still have it. If I stand up very straight and keep my shoulders back it isnt as noticeable. I dont have a DH (yet
but I have worried what a man would think when he sees me, will it turn him off? Probably if I had another surgery and had bigger implants put in it would improve but Im just not a surgical candidate now due to my bleeding disorder, so now I have VERY good posture! Dont be too bummed out yet though, they change a lot over time.....0 -
bcincolorado: hey girl! Glad the surgery is done and you are home!
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whitedove, talk to your PS about all the implant options. I know they base the decisions on your body type and how much tissue was taken out. When I wa at an appointment where we scheduled my exchange, my PS brought in 3 different implants. They all felt heavy but he looked at my pathology after mx and said the one he recommended weighed exactly as the tumor they took out.
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Whitedove, Welcome to the NSM thread! First off, where were your incisions for your NSM? Usually your ps will use the same incision for your exchange. You can also ask your ps what type of skin do you have. Some will tell you right off that your skin is thin. Of course, since no tissue is left, you don't have the extra padding, but the quality of your skin is a factor regardless of having your NSM.
I do know that the true anatomical Gummy bear implants which I am not deciding to go with, do require a larger incision. They are textured and are anatomically shaped which gives you more upper pole and slope at the top of the implant but they can rotate around—and if that happens, it needs to be surgically fixed.
Silicone gel implants (the standard silicone) come in set sizes so the incision has to be large enough to get that bag in, but by no means would I personally call it a large incision and usually is the exact same incision you already had for your NSM. Silicone implants have been improved since the 1990s and surgeons like to use the smooth round implants, since textured cling to our skin and can cause rippling. In general, round silicone implants (not the Gummies) are the softest and the closest feeling to tissue that is available and they tend to ripple less than saline.
Saline implants, in general, can be inserted through a smaller incision because they are placed deflated and are filled at the time of surgery. Saline tends to ripple more and they feel more like water balloons are are harder in feel than silicone, although the true Gummy implants I hear are really hard.
Plastic surgeons prefer silicone most of the time. I heard that there has been a shift...that now even augmentation candidates are heavily leaning towards silicone. I think the ratio is somewhere close to 75% silicone to 25% saline.
I am personally doing the high profile smooth round silicone myself (I am a petite person who needs all the projection I can get!). Usually with silicone, an MRI is taken every 3 or 4 years to check for a silent rupture. I live in silicone valley (literally) and a lot of my friends have augmentation and already have silicone implants so I am just used to them. One of my friends has had hers for close to 20 years without any ruptures or problems. I wish that if they ruptured it would be like saline as well, in that it deflates and is harmless salt water. Unfortunately life is never that easy!
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Hi everyone, I am thinking of having an NSM. I don't have BC but do have extensive LCIS/ADH. Currently on Tamoxifen with no side effects but my doctor is thinking of putting me on EVISTA when I finally go into post menopause and that is the reason I'm deciding on doing the NSM because of all the side effects. I need more information on NSM/with implants and longer term effects. Does anyone know a website I can visit to get more current information? Thanks
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hi whitedove- I had a lot of negative associations with silicon as well, and tend to be mistrustful of doctors who say things are fine, the risk is minimal, so I did a lot of research. I can't possibly recreate it here but I was suprised to find that they actually do seem to be okay now. The main reason they aren't more dangerous is because of the pocket of scar tissue that forms around the TE, which means that even if they develop a leak, it doesn't spread into the bloodstream, unless it goes undetected for a really long time. So with reasonable vigilance and access to care, they should be fine. The link with auto-immune disfunction (the main scare) was statistically insignificant over 15 years, and even the anecdotal reports don't add up to much. There was something like a .005% increase inreports of fibromyalgia- low enough that it didn't actually count as anything in the studies.
As far as other stuff, the skin strength does matter, but since the implants go under the pecs it isn't everything- there is that layer of tissue between imlants and skin. Incisions shouldn't be bigger- I was told they would use the same incision for me as they did the mx through (at the fold under the breast) but only open it half as much for the exchange!
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Hurleygirly,Kate33,Gulp and Jessamine-thank for you so much for your input on Tamoxifen. I guess the defining factor is IDC vs DCIS. Although I'd like to feel like I don't have to take it since they removed all my breast tissue, I think what Jessamine said is what the Dr's say. They are worried about a stray cell since invasive means the cancer already broke out of the duct. You ladies who had DCIS and caught it early and choose a MX may have been some of the most fortunate. You did the most to prevent IDC at the earliest stage. I think after you have been DX with any stage of cancer it is important to take charge of your own health and empower yourself, as Hurleygirly mentioned, you have to eat a healthy diet and exercise. I read a quote from a book that went something like this " We take precious things for granted-the universe, species on the planet, as well as our own body, our health and our well being-until we suffer their lack or loss. However,when we do lose something important, we become acutely aware of what he once had. It is then that we begin to look for answers-to try to make sense of the suffering we endure because of the loss of something precious in the life" This quote talks about appreciation of our own bodies and respecting our bodies to care for them. I was healthy before BC. I ate right and exercised, but now I have an even greater appreciation for what I have to do to stay healthy and also how marvelous are bodies are.
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Jessamine- in your research about silicone what did you learn about regular silicone vs gummie bear? I keep hearing the gummie is MORE cohesive and won't leak but can be cut in half. My Dr does these and recommends these. I wanted them at first but know I'm wondering If I will really like the shape. I want more fullness at top but not a fake look. I keep hearing they have the "sloping" more natural look which could look good, but at the same time I want to be as "perky" as can be after going through this and at my age (44) and two kids who wouldn't want a lift. I am interested in what Hurleygirly said as her reason. I am tall, but thin framed so would round be better than teardrop. I'm confused at this point, plus I want the safest implant. comments anyone?
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