Nipple Sparing Mastectomy with immediate reconstruction
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Great news- Thanks for posting. I got a lot of skepticism from my local docs when I chose to go to Boston for NSBMX and this study is very reassuring.
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Ginger,
I also found no support from my local docs when I chose to go to NY for my NS/PBMX. Finally, I asked one PS if the problem with his thoughts on NS and it's safety and effectiveness were possibly related to the fact that he simply didn't know how to do this type surgery. When pinned down on the topic with a direct question, "How many NS MX's have you done?" I found my answer for he had done none at all. So, he had no personal or scientific evidence about the proceedure.
It became obvious that I needed to look elsewhere for advice, opinions, and a surgeon. I am so happy I did exactly that!
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Sandy- I had the same experience with my first BS. She tried to talk me out of it only to find out she wasn't trained in NS, either. Later I found out her own partner in her practice was doing them. Something she didn't even share with me when I told her I was going to have a consult with a NS-trained BS. I ended up going to one 100 miles from my home because I didn't know about her partner. (This still steams me! Can you tell?) Makes me want to print out these articles and mail them to her. So glad NS is getting more press!
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My dr in Pgh says that I am a candidate for NSS - but the PSs I have met with have not mentioned the one-step reconstruction with Alloderm procedure. The only implant recon they have discussed is the one with TEs.
I have appts with two other PSs this week. Even though there are many other PSs in Pgh, my options here may be limited in that my BS only works with some PSs - and only some PSs are admitted to the hospital where she operates.
I am thinking about going to NYC Sloan-Kettering for a second opinion and to discuss the one-step recon procedure. However having the surgery in NY would really complicate post-op recovery for me, post-op visits etc. If I had any problems and had to go back to NYC to see the dr - that would really be a pain in every respect.
I am wondering if, on balance, exploring the one-step recon procedure is worth it under the circumstances. If I could have it done in Pgh - then it would be a very appealing option (no more surgery -- perhaps!!)
I had a sentinel node biopsy done two days ago. Will get my results Tues or Wed. I am hoping and praying for "all clear". If not - that may affect my recon options (and treatment etc).
Anyway, wondering if any of you traveled a significant distance for your surgery. Ginger 48 - sounds like you may have done that (although maybe you are close to Boston?)
I would have to fly to NYC - which obviously could increase the cost of the whole thing considerably, especially if there are any complications.
Maybe I should just give up the prospect of having one-step recon and resign myself to the TEs....
I am finding that making decisions is the toughest part of this for me. Yes, dealing with the diagnosis was very difficult at first - but now I feel more anxiety stemming from indecision and bouncing around from option A to option B. Like many, I too would like to get this whole thing behind me.
Also - wonder if anyone else had NSS when they had a tumor close to the nipple (mine is less than 1.5 cm from nipple). It has been a slow-growing cancer (I have had these two lumps for more than a decade -- drs failed to diagnosis it properly, calling the two tumors "benign" year after year until this October.) Maybe that lessens the likelihood it has spread to nipple - even though it is invasive cancer with features of ductal and lobular carcinoma. Perhaps the results of the sentinel node biopsy will be informative in this regard as well.
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amsk- I drove 4 hours round trip for NSM, TE placement, some fills and my exchange surgery. I flew from Phoenix to Miami for revision consult and revision surgery. It can be done. It seems overwhelming but worth it to get the procedure/results you want. Just sorry we end up having to do this in this day and age. All current options should be available to all women in all locations. As far as the cancer close to the nipple- I didn't have this but wanted to let you know that during the MX the surgeon will core the cells out of the nipples and do a biopsy right then and there. If any cancer cells are detected the nipple would be removed during your MX. Cancer cells in the nipple are fed from the ducts. During your MX your ducts will be removed so once gone there's no longer a pathway for cancer cells. (The exception being Paget's Disease which some say is an actual cancer of the nipple. Others say the cancer did originally come from the ducts because most with Paget's almost always have an underlying BC somewhere else.) Should you develop BC in the nipple later on it is detected quite early and is easily treatable. (They would remove the nipple at that time.) I think it is wonderful that your BS is willing to give you the option of NS.
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amsk-I did travel about 3 hours round trip to Boston. The days that I had to be there early during rush hour it took longer. I had expected it to be immediate reconstruction but after surgery my skin was too distressed and we had to go with expanders instead. Even though it was a pain to do all that driving each week for fills, I am glad that I went ahead with NSBMX. When I look in the mirror and see my own skin and nipples it makes this whole thing easier to deal with! I just got exchanged to implants so they are not so pretty at the minute but they will be once again when I am healed. I hope you are a good candidate for the procedure- not sure how close to the nipple a lump can be.
Kate33-I also feel like sending this article to my local docs who made me doubt my decision at first.
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Here is the original Georgetown U study on nipple sparing and 21 years to prove it with no cancers!!!
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Ginger 48 - glad you are happy with the decisions you made. Sounds like you are well on your way to a very satisfactory result.
I can have NSS surgery here in Pgh if I want to go with TEs -- I just don't think the one-step direct to implants procedure is available here. I may not be a candidate anyway. From this thread I have learned that PSs tell patients they may wake up with TEs anyway - just depends on how skin looks after the surgery whether it is possible to put implants in right after MX.
I am wondering -- if the PS does NSS and then decides to put in TEs -- are you left with excess skin after all breast tissue is removed? Guess I don't understand where that skin would go. Nor do I understand what the TEs are expanding as I thought they were supposed to be expanding the skin (which is necessary after a typical MX that does not spar the nipple and skin). Guess I don't see the point of TEs if NSS is done. Maybe someone can explain for me?? Thanks!
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My understanding is that the TE's are actually expanding tissue behind the muscle. I was filled 100cc after surgery. They did not want to stress the skin further by putting a full implant in at that time. Then after a few weeks they started adding saline to the expander and slowly fill up the skin. I got 60cc every week. I would not recommend getting much more at one time or doing them any closer together. I started to have trouble when I got a fill 4 days after the last one.
I had 2 PS consults. One would only do expanders. The other would do one step direct to implants but did warn me that sometimes it is not possible and you end up with expanders. I was so disappointed when I woke up with expanders because I wanted less surgery and to be done with all of this as soon as possible. i am now 2 days out from my exchange surgery to implants and can tell that I am getting closer to the finish line.
Good luck with whatever you choose; i hope it works out.
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Amsk,
Traveling to a different city to have your surgery can be somewhat of a challenge but is certainly something that can be done if the proceedure you really want isn't done in the area where you live.
I flew from Nashville, TN to NY for my surgery. After the surgery, my husband and I stayed at a hotel for about 10 days until my drains could be removed. After I went home, I sent photos by email every week and was in constant touch by telephone with my surgeon.
When I required minor revision surgery, I flew to NY again and had the surgery the day after arriving. I stayed in NY for one day after revision and saw the PS for a follow-up and then flew home.
We stay in touch with emailed photos and by phone. I won't need to go back to NY until after the first of the year. If something should come up, I can fly back sooner but this isn't likely to be the case.
I encourage you to have the proceedure YOU want even if it means you must travel to get this. You are certainly correct in that you might not be a candidate for the direct to implant, but it is certainly worth getting an opinion from a surgeon who actually does this surgery IF this is what you want. You are only going to have this surgery one time. so investigate all your options! Don't let your list of options be shortened by your physical location!
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Thank so much Ginger and Sandy for your thoughts and advice. I do want (at least in theory) the NSS surgery and one-step recon. I may well end up with TEs though like Ginger did, even I go to NYC in the hopes of getting the one step recon., depending on the condition of my skin after surgery.
Staying in NY for 10 days by myself would be quite dreary for me as well as expensive. So while I agree that I should endeavor to get the procedure I want, being so far away from home and having to convalesce in a hotel room (and possibly ending up with TEs anyway!) plus the possibility of complications --- all weigh into the decision making process as well.
I think I will postpone any decisions until I get the results of my SNB which will be Tues or Wed.
I guess I still don't quite understand the TEs vs one-step implant procedure. If TEs are used to stretch the area under the muscle where the implant goes rather than to stretch the skin -- why is it that a one-step implant procedure is even possible -- as immediate insertion of an implant would necessarily involve stretching the same area. I do know that Alloderm is used in conjunction with the implant in the one-step procedure, but that really doesn't answer the question of what, exactly, is being stretched -- and why a one-step implant procedure is even possible in lieu of TEs, if TEs are needed to stretch the area under the muscle.
Can anyone more familiar with the one-step procedure explain this? Thanks!! Best Amsk
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Amsk - the TEs are used to stretch the skin - so if more skin needs to be removed (as in a non-nipple-sparing procedure), the TEs are inserted and you literally grow more skin, slowly, as the TEs are expanded over a period of time. If you have enough skin and it looks healthy enough to the surgeon when s/he is operating, the permanent implants can be placed under the pecs instead. For example - b/c I had a prior-irradiated left breast, my PS said that she would have to make an on the spot decision in the OR as to whether my skin was pliable enough and whether the blood flow to that skin was adequate so that the skin would survive the stress of having an implant placed immediately.
I should add here that a post-op issue many of us who had permanent implants placed is painful muscle spasms from the pecs being messed around with - they gave me valium in the hospital, and mine passed w/i 24-48 hours - that was the most painful thing for me post-op!
As for your question on the other thread re revisions - I had one on that same left breast. The BS and PS used my old scar from my previous lumpectomies in that breast and part of the scar wasn't healing well - looked like a black spot on the line of the scar. During the 15 minute in-office procedure, PS re-opened the scar, cut out that necrotic bit, and closed the whole thing back up. It was painless (they used lidocane, but I am numb in that area anyway) and while I have had to be more careful of movement on that side, it hasn't caused me any additional discomfort. Looks great now.
Hope all this helps.
Sarah
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Amsk and Eveberry, I had TEs placed at time of NSMs and they filled them to 400CCs during surgery along w/Alloderm. This got me to about 2/3 of my natural size. Your skin is elastic, so i did not have any extra skin hanging off, it just snapped back to form around the TEs. When placing the TEs, they cut a pocket into your muscles so depending on how much they fill your TEs initially, you can have significant stretching of the muscle. I was in the hospital for 4 days, probably because he filled the TEs so much. I have had 3 fills since surgery, and that should be all that I need. Now I just need to wait until February for my exchange surgery. From what I know, the one step process can be done in smaller breasted women as the muscles aren't required to stretch as much. I was a 36C. I met with several surgeons before deciding on one. Good questions to ask are how many NSMs ave they done, what is their rate of complication, also what percentage of their patients have lost their nipples due to necrosis post-surgery.
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Just to add to my last post, one PS that I interviewed said that 40% of his patients lose their nipples post surgery, I noted that he had said that when I had surgery I would need to buy a compression garment and bring it to the hospital as I would be wearing it home. When I met with the PS that I decided on, his nipple loss rate was about 4%. He said that I should not compress the nipples, and I still can't as this could cut off the blood supply to the nipples. It made me wonder if the first PS had a higher rate of loss due to recommending compression. What have other people's PS recommended?
I had some scabbing on one of the nipples about 10 days after surgery, but it healed just fine.0 -
tigerw0man- I remember reading the research paper once that said the success rate of NS was directly proportionate to the surgeon's own experience level. My guess would be the PS with only the 60% success rate hasn't done very many of them. When I left the hospital after NSM I was loosly wrapped with guaze. I never had any compression garments. (Just the fact that he wanted you to purchase one and bring it in with you would make me a little suspect of the whole thing. Just doesn't seem right.) Glad you went with the other PS !
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tigerw0man - I had nothing on immediately post-op, but my PS used this adhesive surgical sponge stuff underneath both breasts and to the side of each to sort of bolster the Alloderm. That got removed 24 hours after (I was allergic to it) and I got a surgical bra (which I would've gotten to go home in anyway). It provided support, but not compression, per se. She has only wanted me to be supported, not compressed, either.
If I recall correctly, my BS did quote a 40% failure rate for nipples . . . I'm going to ask her when I f/u w/her in a month or so - and she and my PS do these all the time! Mine are both here, thankfully!
Sarah
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I also came home with a surgical bra only. no compression with my NSBMX. Nipples did great! I do have a compression bra this time with exchange surgery.
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I haven't asked my PS yet when it's safe to compress my nipples? Is it after the exchange surgery?
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After NSM I was told to wear whatever was comfortable, including nothing or a shelf cami. After exchange was sent home with a semi-supportive surgical bra - no compression, however.
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I have insommia again tonight...I am getting nervous about all this. The upcoming mastectomy really scares me. All the reconstruction information is confusing. I've read that some women had a one day procedure and went home. For the lumpectomies I had going home the same day was great. For the mastectomy, I would prefer to stay in the hospital for at least one day overnight to deal with it all, drains and etc. Never had a drain put in before. At this point I don't know wat the doctor is recommending. I dread looking at the breast after it's been removed. I don't want to lose the nipple.
I see the Plastic Surgeon today. He's suppose to be good. I also have an appointment with a fat grafting Plastic Surgeon on Wednesday,although he's never done a mx. The bc surgeon said after seeing the ps she will make a surgery date. I want it to happen soon to remove the cancerous breast, but emotionally I'm having a hard time with the thought of losing my natural breast.
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evebarry- talk to your doctor about what you want to do. tell the dr you want a night in the hospital to make sure pain/drains are under control. I went home the same day for my lumpectomy but ended up staying 3 nights with BMX. I think most people spend at least one night in hospital after that. If your dr says it is medically necessary then I think insurance will cover it but you should definitely talk to your doctor about what you need. Best of luck!
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eveberry - try not to worry, for some of us the surgery really wasn't that bad. I stayed one night in the hospital - with some very nice drugs - the PS really wanted me to stay another night - but I felt so good that he let me go home - as long as I promised not to do anything!! I too think insurance should cover the stay - for as long as the doctor thinks you need it. It also depends on who you have at home to help - stay longer if you don't have much help - good luck!!
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evebarry - You and I were diagnosed the same day (10/04/11).
I don't have a surgery date yet either. I am still trying to find the right PS. I have seen 2 so far - have an appt with a third tomorrow. I hope I can gain a high level of comfort and confidence in this PS as I am starting to worry!
I fully sympathize with your sadness at losing your natural breast. I too have experienced a lot of sadness (following the shock of the diagnosis) this month. Now I am trying to focus on the desire and need to be "cancer free" as opposed to losing my breasts. What else can we do - right? It's a crummy diagnosis. It sucks. But life does go on and so will we - hopefully with fabulous new (albeit fake) ta tas. I do think we have the right to insist on the best reconstruction that medicine/technology can offer us even though we did not choose this route (and I never wanted breast surgery).
We will support each other and everyone else. Best - Amsk.
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Evebarry, it's all pretty upsetting, losing a natural breast (or two), having breast cancer itself, and then surgery and all the unknowns. The good thing, though, is that most of it does turn out okay. Not to be a Pollyanna about it because obviously there are difficulties and detours and unexpected things, but it's amazing what a good surgeon and ps can do. I had BMX with NSS six weeks ago. Although I'm still surprisingly tired, in general I've healed well and my breasts (should I put them in quotes??) look pretty good. It makes me happy to see my own nipples and my own skin. Anyway, hang tough. I was in the hospital for three nights and then I was really ready to go home and sleep in my own bed. If you can, I'd keep looking for a ps with lots of experience in MX and NSS. That, I think, makes a big difference. Wishing you all the best.
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Hello everyone,
I have an update. My surgery reschedule from November 21 to November 10. this date works better for us. Tomorrow I have pre-operation tests and when is so close I am more scared. So far the plan is the same PS confirm that i am a good candidate for NPS with one stage reconstruction with no TE. Also BS going to do lymph node biopsy. My PS said that I will be in hospital for 2 days, and my BS said 4-5 days so I don't know who I have to listen.
Hug to all , Ella
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Hey all, I will try to make sense through the drugs as I write this. I had my skin sparing, nipple sparing double mastecomy Friday Oct. 28. All went well they were not able to save the nipples but the PS made some with the skin. I can go later and get tattooed if I choose. I had the one step immediate reconstruction. No TE's, so far I'm very pleased. It's preety painful and I have 4 drains, they are very annoying. The bruising and redness are fading and so far I'm pleased with the results. I'm just ready to feel better.
If anyone has any questions, I try to be better about getting on here and I'll try to help as best I can.
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Deniseday - congratulations on making it through! Tomorrow you will be a full one week past your surgery. I am glad to hear you are pleased. Sorry it was pretty painful though. Did you have the spasms that some people talk about? Is the pain mostly from the muscles and the sense of expansion rather than the surgery -- or can you even tell? When do you get your drains out? Are you up and about or not yet. Sleeping ok?
You say you are pretty pleased with the results - so you can see the breasts already and how they look? (I really don't yet know what to expect in terms of bandages, swelling, etc.)
Is your size comparable to what you were pre-surgery or did you go a little smaller/larger? What size were you to start with and where do you think you are now?
Do you think it was a good decision to go with the one-step process?
Did the surgeons have to take both nipples - or did you decide to have that done for symmetry?
Sorry for all the questions but there certainly is no substitute for actual experience! I wish you a speedy and successful recovery. You are certainly through the worst of it I would think. Best, Amsk
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Amsk, I'm going to try to remember your questions, LOL!!! As far as the spasms, my BS came in the day after surgery and gave me 4 "trigger point" injections in my back. These completely wiped out any back pain that I was having. The pain seems to be a "tightness" especially around mid chest. I was a DD and I hope to be a C when this is over. I did not have TE as I did the one step, but the PS cut away some skin since I was so large. I'm not real sure where the pain is coming from, just a generalized soreness. I had absolutely no bandages. I looked amazing. On Thursday the PS will put me in a bra to help to shape and create cleavage. I'm worried about that as the thought of moving these "boobs" makes be cringe. I get my drains out tomorrow and although I'm so ready, I'm also so scared because I'm afraid it will hurt. I'm don't mean to whine, but I'm so tired of hurting and being hurt. If I understood right, the reason she did not keep the nipples was because I was large (DD), and after breast feeding 3 babies, I was kind of "pointing down", LOL!!! so for me to get a lift and be smaller at the same time, they weren't able to keep them. The PS kinda pinched up some skin to make what looks like a little nipple and I can get tatooed later if I choose. I'm not even thinking about that now.
I hope that answered most of the questions. I'm very pleased as I shouldn't have to have any more surgeries. That was my reason for choosing this route over so many others. I have very little bruising and essentially no redness. The color is good and ther is no sign of infection. This may be due to me having the 4 drains, as they won't let any fluid build up. I'm getting 10cc or less now so I'm certain they will come out tomorrow.
Good Luck to Everyone facing this or any surgery
Denise
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Denise- Usually having the drains removed only hurts if they've been in a long time as tissue starts to heal around them. Since yours have been in for less than 2 weeks it should be fine. If you're really anxious about it you can ask your PS if you can take a pain med ahead of time. It won't hurt and may ease your anxiety. They take them out in a matter of seconds, though. You take a big breath and...woosh, they're out! And you will feel SO much better afterwards! I felt like a dog off a leash!
Just wanted to add that if the tightness continues it's a really good idea to have some PT when the PS clears you for this. It really can help loosen the pecs and increase range of motion. Good luck tomorrow!0
