Nipple Sparing Mastectomy with immediate reconstruction
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evebarry- Do you have access to the picture forum? There is a separate thread for unis and you could see what you think. Sometimes it's nice to see "real life" photos to see others results. I've seen some that looked amazing. Most of them, though, seem to do a lift or augmentation in the opposite breast. If you're not on the pic forum just PM whippetmom, Estepp, Lilah, Timtam or MBJ and ask for access. It is a separate site run by some BCO members.
I post on another thread and a member just said how brave I was for choosing NS. As though I chose vanity over safety or the risk of recurrence. Obviously, there is still not enough information out there about NS- that current research shows it is just as safe with the same rate of recurrence. This is so frustrating to me that women choose to remove their nipples because they think they're playing Russian Roullette if they don't. I was just contacted by my PS's office. They want to use my photos to submit for a local magazine article on breast reconstruction. At first I was a little hesitant, although my name and face won't be used, but now I think it is a good thing. Maybe if more women see the results they can have more will demand NS if they are a good candidate.
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Kate - I think it's pretty awesome that you are willing to share "anonymous" pics of your NSM. When BC comes up in conversation, I am so quick to add in I had a NSM. More often people just have never heard of it (actually I have YET to meet someone in "real life" who is aware of the procedure)...and YES - it needs to get out there. When I had mine, I had read about it on this thread, I was recommended to have NSM and passed off to an experienced surgeon without even having to ask for it. The 'stigma' or fear of recurrance with NSM needs to stop, the more recent and accurate information that is out there, the better for future women facing BC....knowledge is power and sharing your story is bound to have an impact!
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Thanks Megan! Now that I think about it I've never talked to anyone who has heard of NS, either. Amazing, huh? I wish I could remember where I read about it. I'd send the site a thank you note.
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Kate - YAY - good for you - that's great you are going to do that!!
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Megan & Kate ~ I don't think I've ever talked to anyone outside of BS that has heard of NSM either! And regarding keeping the nipple being an increased risk of recurrence.... considering that lumpectomy and mastectomy have almost identical recurrence rates....why the heck wouldn't you keep the nipple if possible?
I think that's awesome that you are letting them use your photos, Kate. I signed off for my PS to use my photos without hesitation. I remember my first visit...they didn't have a lot of photos to show me because not that many women gave permission.
Also... I was reading back a couple pages about your wandering nipple/cleavage conversation. Very interesting. I apparently have a wide chest wall and never have cleavage...even with the implants. In fact, I was wondering if it was "okay" that they didn't have very good cleavage considering they were implants. After seeing that link it makes more sense. My PS kept talking about and measuring my "breast pocket" during this process...and now that I think about it... they do "lay" similiar to how my natural breasts were. They actually lay to the sides like natural breasts when I lay down which I thought was weird. But my nips seem to still be where they are supposed to be....maybe that's a trade off for the perkier boobs with better cleavage?
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Hi everyone, Please help. I just received phone call from oncologist regarding my pathology report. During the surgery BS removed one lymph notes and he said was clear. After path report they found some micro-metastatic cells and I have two options to remove more lymph nodes or radiation for 6 weeks, however I have NS one step reconstructions and my implant will affect radiations. i am so scared. Before my surgery doctors were 95% sure that i do not need radiation after surgery because of DCIS and invasive cancer 0.15 cm so small. I am so scared. Also oncologist said that I can take a risk and leave them alone, but i am not crazy yet. She said that with blood is the chance that cancer cell can go in other part of the body. How to find if the any cells in the other part? Is any test can be done like cat or pat scans?
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I am very sorry if this has already been discussed but I have been reading this thread for 2 days after work and still havent finished and really wanted to get an answer.
I had NSM UMX with TE on 10/12 which makes me about 7 weeks post op. About 2 days ago I noticed that my breast was getting hard it has continue to get harder each day so that at this point it is like a rock. I lost feeling in the breast fully about 1-2 weeks ago which I know if normal. But I dont know about this hard feeling. Is that normal? Will it go away? Will my breast feel normal again?
Thank you so much for any help. I have learned a lot since I found this thread and havent even been to other parts of this website yet.
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SusansGarden-Actually lumpectomy and mastectomy have the same survival rates which is different than recurrances rates. I had lumpectomy and rads and then found out I am at high risk for local recurrance. Because of high risk I would have to be scanned (mammo's, US and MRI's)every six months for life which I was not crazy about so now am opting to have a MX to lower my risk of local recurrance. I am excited that I am a candidate for NSM as my cancer tumor and my B9 tumors (that put me at more risk) were far enough away from my nipple that my surgeons feel very comfortable with it. So now I just have to wait until March to continue to heal from rads.
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Ella- Sorry to hear about your path report. Have you had a chance to sit down with your oncologist and go over everything? If not, I would try to get in as soon as you can and go over your options. I would also meet with your PS and see what the risk is to the implants. Once you have all the information you'll be better able to make a decision. Wishing you the best of all outcomes. (((hugs)))
amom- Just want to make sure- you still have your TE's in, right? Because those things are hard as rocks. A lot of us compare them to turtle shells. My PS never warned me about this so it was quite shocking to me to find this out. Rock hard abs? Wonderful! Rock hard boobs? Not so much. Unfortunately, it's just part of the deal and the implants are nothing like that. They are soft and squishy and feel soooo much better.
Sherry- So wonderful to hear you're a good candidate for NS. It really does make such a difference in accepting MX. Good luck with your continued healing!
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Kate33 thank you i have appt to my PS dec 6 , but i dont have appt to oncologist. i talk to radiation oncologist and she said about these two options. they call me back with oncologist appt and we will go over my options. i don't wanna do lymph nodes surgery, my BS said that nothing serous just couple cancer cells and oncologist will let me know with treatment. Do you have pictures on picture forum i have access however I don't know how to take a look pictures?
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Breast Reconstruction with a Silicone Implant
The newest and most gratifying of the procedures is breast reconstruction with a silicone implant, often utilizing Alloderm. Alloderm is a natural skin substitute that is used as a sling to completely cover and protect the implant. This procedure has so many advantages because the mastectomy is performed utilizing a skin-sparing technique, which preserves the majority of the skin envelope and results in a minimal scar on the breast. Oftentimes, the nipple and areola can be preserved. No expansion is needed and, therefore, this is a one-stage procedure.0 -
Ella- My photos are on there. Just do a search for my screen name- it's the same as here- Kate33. I haven't posted on there for awhile so the thread will be pretty far back. Good luck with your appointment and keep us posted.
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amom438 - As Kate33 said, the TEs can be quite uncomfortable and feel hard. However, if this doesn't seem to correlate with having fills a call to your PS might be in order. It is possible to develop capsular contracture around the expanders and that should be addressed.
Keep us posted. Hopefully, it's just the "normal" discomfort that goes along with TEs!
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I had a NSMX in November of 2010. My cancer was far enough away from the nipple to go for it. Unfortunately, my nipple didn't make it and I had to go in for a revision to remove it. I also had micro-mets in one node but they took out 3 others at the same time during surgery and they were all clear. Did they only take one node at the time of your surgery? My recurrence score (Oncotype DX) came out extremely low (6) so both my breast surgeon and oncologist said I needed neither chemo or rads. I had DIEP flap immediate reconstruction and now a year later with a reconstructed nipple it looks and feels fabulous. Micro-mets is not the end of the world but it is important to know whether this was sentinel node and they check any others during surgery. If not, then you most likely should elect the surgery to check more of them or rads. Personally, I would elect the additional surgery as it shouldn't be that bad as opposed to taking the risk of causing problems with your implants. Best of Luck!
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Hi JannoD. Thank you for you advise. The BS did SNB during surgery and took just one lymph node and he said was clear and after path report they found micro-mets in this note.
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Ella - Oh I'm sorry to hear your news. I don't' have much experience with this so I can't give advice but just wanted to send you virtual hugs and I hope you onc will be able to give you a good advice as to how to proceed. Hope everything goes well... I know how you feel about not being able to hold you baby. I have 2 ½ year old twins and one of the hardest things about this while process is the fact that I can't hug and embrace them tight like I used to and generally because they are so active I can't be around them much because they love to run and rough play and I am scared they will bump me.
Kate - I think it's amazing that the magazine asked you to share your pictures, it's a big step but if they keep your anonymity, it might be worth doing if it's something you are comfortable with. I am too surprised that not many women that are specially doing prophylactic bmx are not keeping nipples. My oncologist said it has greater risk or cancer but it's somewhere 1% which I guess being vane - I decided to take that risk. I hope mine stay. Do you know when it's clear that nipples took and are not going to fall off?Susan - I Have a wide chest wall too. Even though I had relatively big breast before (C+ cup), I could never have that beautiful "decoltage" look. I could not get any bra that would do that for me either. Now, after researching the implants and how ps size they to your chest wall. It all finally makes sense to me. Interesting how I never thought about it.
Hi to everyone else
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Is anyone know how to get oncotype score?
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ThisToo- If your nipples don't survive they won't fall off but it will be obvious that the blood supply to them wasn't able to be maintained. Just to warn you- often times the nipples will scab over with a dark black scab. A lot of women think this means the nipple hasn't survived but it's pretty common. If this happens just leave it alone and within a few weeks or so the scabs will fall off and you should see nice healthy pink nipples below. Also, if a recurrence happens in the nipple it will be immediately obvious and will be felt on the outside of the nipple. If this happens they would remove the nipple at that time.
I just had my 2nd annual follow up with the BS. She was telling me of a BS in California that is expanding the parameters on who is a good candidate for NS. She has had great success doing NS even on women with invasive BC, BC closer to the nipple, etc. I think as doctors press the envelope that NS will someday be the norm for everyone.
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Ella1998 -I replied to you on the "November 2011" surgery thread - but reading JannoD's experience was most interesting. I thought that if there is evidence of any micro-metastatic tumor cells in sentinel nodes that radiation is usually recommended -- at least that is what my doctor told me. I see that was not what JannoD's doctor recommended.Do you know if the oncotype test has been done on the tumor that was removed from your breast? You should ask your breast surgeon - I believe that is the doctor who orders the oncotype test -- either the BS or the medical oncologist.If I have a low oncotype score I am definitely not going to have radiation. If it is in a "grey area" I probably still will not have radiation and trust that hormonal therapy takes care of whatever might be lurking (due to the presence of "ITCs in my sentinel nodes and a close margin by the chest wall). So, I agree with you that getting the oncotype score is important to whatever decision you make. I do think you should talk with your PS regardless, to see how radiation would impact your ongoing reconstruction.As far as the removal of more lymph nodes, I think you need to ask your BS what he/she is thinking of doing (a level 1 node removal, levels 1 and 2, or 1, 2 and 3); and what the decision would likely be depending on the various outcomes. In other words, if your dr is recommending a level 1 axillary dissection (which I think would be about 10 - 15 nodes), and if those nodes were found to be clear - would they then recommend against radiation? Like the other ladies who have responded to you, I think you need more information. Keep us posted! amsk.0
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Kate33 - Thank you for verifying this for me I searched everywhere for "hard Boobs" but could not find anything. Yes I do still still have my TE in and glad to hear this will soon pass. I have noticed that you have mentioned pictures. Are these on this site or another site? Maybe I am a retard and cannot search correctly.
TinaT - I did have an appointment for a fill up today and PS verified that I was flipping out for nothing on this point. But did say I may have a problem with the pain in my ribs, he thinks that he may have attached aloderm to a nerve so may have to go in to fix this.
ThisToo - and anyone else interested. One week after my NSP I woke up to a Grey nipple (apparently refferd to as a purple nurple). I flipped out because I really wanted to keep my nipple. I called PS and got in to see him immediatly. He confirmed that it looked like the blood supply was not working to the nipple. He said the only chance was to do Hyperbaric. I did this and my nipple did survive and looks great. Maybe an option if you have any problems.
Kate33 - Thank you for verifying this for me I searched everywhere for "hard Boobs" but could not find anything. Yes I do still still have my TE in and glad to hear this will soon pass. I have noticed that you have mentioned pictures. Are these on this site or another site? Maybe I am a retard and cannot search correctly.
TinaT - I did have an appointment for a fill up today and PS verified that I was flipping out for nothing on this point. But did say I may have a problem with the pain in my ribs, he thinks that he may have attached aloderm to a nerve so may have to go in to fix this.
ThisToo - and anyone else interested. One week after my NSP I woke up to a Grey nipple (apparently refferd to as a purple nurple). I flipped out because I really wanted to keep my nipple. I called PS and got in to see him immediatly. He confirmed that it looked like the blood supply was not working to the nipple. He said the only chance was to do Hyperbaric. I did this and my nipple did survive and looks great. Maybe an option if you have any problems.
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amom- The picture forum is a separate site which was started by a BCO member. To gain access you have to send a PM (private message) to one of the "gatekeepers"- whippetmom, Lilah, Estepp, Timtam or MBJ. They will only grant this, though, if you have posted a lot on here. This is to protect the privacy of the women who have shared their photos and to ensure that only legitimate posters are allowed in. Your count is pretty low so would suggest you try posting more on here. Good luck!
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amsk-the oncotype score does not help you with a decision on rads only chemo as it gives you a recurrance risk for distanst mets not local recurrance. A RO would be the best person to talk to to give you percentages on local recurrance with or without rads. A good one will be more than willing to give you the numbers.
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Hi Sherryc - thanks for your thoughts.
I did see a top RO regarding risk of local recurrence without rads. He placed the risk at 15 - 20%. The fact that I have a close margin (less than 1 mm to chest wall) in a spot is the concern.
He did tell me that the oncotype score could influence his view as to the advisability of radiation. I hear what you are saying - and don't know what his logic is in saying that, but will certainly probe thoroughly with him if my oncotype score is not low.
I see you had radiation - did you have a lumpectomy? Best, amsk
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amsk-yes I had a lump and rads and had a difficult time during rads. Once it was all over with and I started on my followup that is when I found out I was at high risk for local recurrance because of B9 (high risk of turning into bc) tumor history. So I was checking into getting a BMX with reconstruction and then they found another B9 lump on my other breast and had to have surgery to remove it as well. At that point I said I am done and am having them removed for sure. I now have a PS picked out who I feel can deal with my rads breast and any complications that may come out of that. He is also the only one that has given me any hope about keeping my nipple on the rads side. I am a little peeved at my BS because she never told me that if I had had a MX I would not have had to have rads. I am waiting for the PS office to call me and schedule but it will be late march as I need to work with my bosses schedule and he is out between mid jan and mid march. Also gives more time for my rads boob to continue to heal.
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Sherry- Just wanted to clarify that even with MX it is sometimes necessary to still have rads. I didn't learn this until after my NSM. Luckily, it didn't happen for me but if the tumors are close to the chest wall they will sometimes recommend rads even with MX. It's not common but it does happen and they don't know until the MX is complete. Just wanted those who have MX coming up that there is a chance that can happen but, like I said, it's not common.
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Yes Kate I am aware of that. This last benign tumor that I had sat on my chest wall and I knew that if it came back cancerous that I would have to have rads and I so never wanted to have rads again. Thanks for clarifying that for others who did not know.
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Oh Kate33 and Amom438 you girls dont know how in time and comforting your posts are!
I litterarly just got back from my ps from my first post op and my left nipple looks healthy but my right one is all purple/gray, looking like a bruise more than a nipple and my ps said it's 50/50 and also said something about a scab. I am seeing him again on Monday to check it. I was so upset because the way it looks it doesnt look ok. I am 8 days post op.Kate - Thats exactly what my ps said actually that my procedure is not done common here in Canada and only a handfull brest surgeons will do it. I actually went to 2 who said no way and that they won't "put their name on it" by leaving the nipple. My ps said we are "pushing the envelope" with NS. What do you mean about "recurrencehappens"?
Amom - What is hyperbaric (you mean the oxygen chamber?) and where do you get it done? Did you do anything else to help the process and did it scab over? Sorry to many questions but yes, I am flipping out as well.
Kinda upset right now because ps said if my nipple doesn make it then he will have to take out implant and put expander in. Wait till it heals and then do exchange surgery and then nipple graft with is 3 additional surgeries in the next year and I hope it doesn't get to that. Trying to stay optimistic.
Amsk - I just read on the other thread that your nipple is purple too? WHat did your dr say about it? How are you feeling in general? I got my drains oiut also today.
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ThisToo:I was worried about my right nipple (which is breast where the cancer was), until I met with my PS. I asked him specifically if it was "in jeopardy" and he said no - without hesitation. My BS called me earlier in the week and asked me if my nipple had turned black. It had not - and is still not black....but may end up there, I don't know. I was warned that this can happen and may be part of a natural scabbing process. So right now I am not worried. I will see my BS on Tuesday and my PS on Thursday of next week.I am greatly relieved to have those drains out - aren't you? I still have a lot of tightness, discomfort in chest area and underneath arms, and low stamina - but find all improving every day. My PS told me to continue to take it easy for about 3 weeks. I am trying to do a little more each day (including my exercises -- which I have not been very conscientious about so far now...;-)0
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This Too & amsk: I had my BMX in July and currently have TEs (scheduled for Exchange in Feb - can't wait!) I wanted to let you (and others) know that sometimes healing just takes TIME. It was 7 weeks out from my MX before I knew the health of both nipples. There was no infection, but the right took its dear sweet time to get better. Frightening scabs. I was worried that something was wrong. I feared that they would look like that forever. Now, they look fine. One nipple is far perkier than the other, and yes, I am sporting that "half coconut shell" look until the exchange. (Happy that it is cold and I can wear loose blazers). Very, very glad that I had NSM.
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This too shall pass, I also had the one step reconstruction on Oct 28. I was a DD. My implants are 660cc's. I looked this up and it is a C. This is what I wanted to be so I'm good with that. My breast look really good. You can hardly even see the scars. I am still a little uncomfortable, especially at night. So far, so good. I have been pleased.
Denise
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