Nipple Sparing Mastectomy with immediate reconstruction
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Dear Kate33,
Thanks for reaffirming my opinion. Here's the rub. I've been told that they are very conventional at the Mayo clinic, and the BS wasn't very enthusiastic (but not negative) about the NSM. I have yet to try to negotiate the inframammary incision because I just found out about it - not a good sign after 2 visits to this BS. I am going to call today and try to leave a message, rather than waiting until the day before. Wish me luck! (I think I will need it). I think that finding physicians who are willing to evolve their practice to incorporate new and kinder approaches is hard.
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flygirl-I had a NSM and had my incision from armpit to nipple. I had IDC. The Dr told me they did it that way in case they found something wrong with the nipple and had to remove it. I think though if you have DCIS or LCIS it would be more likely the Dr could do the incision at the imframamory fold. It's a delicate situation when we go to the Dr and try to tell them how we think they should do something especially when we read about it and know it can be done. I had one Dr tell me I couldn't have a NSM and when I asked her why she would not give me an answer. Come to find out she just didn't do them, but she wouldn't come out and say this. She just said I couldn't have it done. We should be able to ask our Dr questions and find out why or why not something can or can't be done. I've always said you are your own best advocate. Good luck with your appt. Keep us posted.
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I hope this helps I had this type of surgery 28 days ago, the incisions are beneath and they are not very obvious and there are some slight scars from the lymph node removal and where the tubes/drains were on each side. I started back at the gym this week doing light exercise and going into the pool, and i am changing like the rest of the ladies without thinking I look so different.
I looked at many pictures with my husb and we both agreed that the proceedure (one step with alloderm) looks decent.
I hope this helps- also I decided to stay the same size which it appears many women do not, and I decided this after reviewing pictures of others. I hope this helps.
During my surgery, they sampled under both n's and since they were cancer free I got to keep them and I was told that if this was not the case then I would lose them- atleast I got lucky on this.
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When I have my double NSM next week, my plastic surgeon is going to do the horizontal incisions right across the middle of each breast, which is ok by me. The Dr. said going below the breast for me will put too much stress on the incision after radiation to one breast and a breast reduction to the other breast last November to match up the size with the breast that had the lumpectomy. As it is, the surgeon is going to have to do a lat dorsi flap on the radiation side because she said radiation just fries tissue and maybe a lat dorsi flap on the other side if she thinks alone the breast won't support the implant because the the breast reduction scar (inverted T). I don't have a problem with the horizontal scars I will add to my collection. Due to a bilateral breast reduction 6 years ago, I have inverted 'T' scars on both breasts, but they really faded to almost nothing over time...except for the one made smaller in Nov and the other breast with the cancer, well the breast surgeon used the same site to do the lumpectomy with the addition of another incision (which you can't even see). Guess my big concern is for my nipples. This will be the third time my nipples will be mucked with and I just hope the blood supply will be good. Also hoping the Dr can put in small 225cc or 280cc implants right away to avoid fills as I live 2 hours from her office and to avoid another surgery to put the permanent implants in. The PS measure me and said my breasts now were 380cc but I am happy to go teeny tiny if it will decrease the stress on the tissue. Plus I'm only 5' 3" and a runner, so don't needs my 'babies' flopping around. If my nipples have the side effect of staying permanently erect after the surgery I don't care as I will just be happy to have them!
I never thought breasts could be so diverse and complicated!
I am just hoping to have no nasty suprises on the pathology report on the breast tissue they remove. That makes me anxious but I know my decision is right and it's better to know than to keep my breasts around, anxious that something is growing in them which wants to kill me.
Sorry for being so morbid, but I just don't like the idea of my own body growing something which could kill me.....Sometimes I think being a RN isn't an advantage....my mind runs on all the things that could go wrong with such a big surgery......enough from me.
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Being in the medical field can be bad... we know too much.
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Dear cc4npg,
Yes, I agree with you . Sometimes I know more than I want to! I wish I could just float through all of this and think the pathology report from the DM will be clear and I won't require chemo and radiation again and I'll have two perky breasts and never have to think or worry about breast cancer again.
Guess I would like to be in a world where the Tooth Fairy and Santa Claus are real.......
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I had a unilateral NSM at the end of June 2010. I first had a lumpectomy in early June with the incision going around the top of the areola. My PS (at Mayo in Phoenix) chose to use the previous incision so my scar goes from my areola laterally toward the armpit. The scar has faded considerably, but there is obvious shrinkage which pulls on my breast skin. I can't feel it but I can see it.
If you can get the NSM with incision in the IMF or below the breast, go for it! I don't mind the look of the scar but I don't like the pulling and how it slightly distorts my breast shape even though it's slight. Noone can see in clothing, but I see it in the mirror.
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How correct you are! I do not work in the medical field but have been at Vanderbilt University Medical Center SO MUCH over the years, I am generally offered the employee discount when I am purchasing food in the cafe. I was there on a daily basis for over 15 months while my Dad was waiting for a heart and all the time spent there after the transplant. I suppose I am such a familiar face it is just assumed I must work there for it wouldn't be possible to be present so much otherwise. I have had no choice but to learn so much about far to many diseases, how to read path reports, lab reeults, med records, make decisions about too many things, for I have been the caretaker for so many members of my family as well as friends.
Sometimes, I think it might be better to know nothing! I think I would have far less fear if I really didn't know all the things which probably will not happen but could. I have found myself reading CV's for all my docs and while this could be good, I am now almost crazy... Perhaps I am indeed totally nuts!
Hugs to all and special hugs to all those who work in the medical arena for you are our special angels!
Sandy
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speech529,
I don't have really any options. Due to my previous surgeries leaving the invesrted "T" scars and the radiation being where it was, I am agreeing with the bs to do horizontal incisions with the LD flaps in hopes of doing it all, including permanent implants in one go. Having this bilateral NSM will have me in the hospital a week, and unable to drive for a month and no heavy lifting for 8 weeks, no exercise for a month! That's quite enough pain and inactivity for me. I just don't want to have to go in weekly to have fills and then an exchange surgery. Hopefully going for tiny implants will help and I will just hope the preventative antibiotics work!
Does the breast shrinkage cause puckering? That happened with my original lumpectomy scar, so the surgeon went back and revised it with great results (her idea, not mine). I had just figured if you had a lumpectomy, of course your breast was not going to look good. The puckering made the nipple point to the side - very interesting.
I do know what you mean by looking at our own reflection in the mirror - it can be very unpseeting after all we go through. While I was bald from chemo I got so I just blurred out my face when the mirror was in front of me in the bathroom, as it would make me feel worse to see a bald alien without eyelashes or eyebrows, skinny and pale and then to have my eyes fall to my chest and see a permanent reminder that I've had breast cancer - scarred for life!!!
I am hoping for the best with my bilat NSM next week as far as 'looks' go, but most important to me is no nasty surpises on the breast tissue pathology report!
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justagirl Amen to your last comment--no surprises on the path report! I hope all goes well for you next week in all areas--health and appearance.
So far, there is no puckering, but straight on you can see just the slightest impression where the scar runs laterally. I hope that this very small, minor pulling is all that I get.
Truly, truly...I can't complain!
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Hi Ladies,
I am trying to help my wife who has recently been diagnosed with IDC ( 2 x 1.5 cm lumps in RB). We are both going thru serious shock waves thinking that we will wake up from this nightmare one day!
My wife is not much interested in doing any research and trying to find the best options. She is submitting to what her local old school surgeon is saying. She is thinking of just doing the traditional BMX, although the left side is clear.
I put my work aside during the past 4 weeks and have been doing a lot of rerasearch about options and risk. It appears to me the NSM is an excellent option for her and she is likley to be a good candidate since her lymph nodes are not suspecious and the lumps are away from the skin and nipple. I connected with the Mayo clinic in Arizona and with MD Anderson in Texas. We are going for consulation on Thursday.
Can anyone of you shed some lights about qualified local surgeons in Canada that do NSM?
What is your experience with it after few years?
Thank you
mag1
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mag1: I can't help with surgeons in Canada, but please encourage her to at least get another opinion. I had bilat nipple sparing mx and am very pleased with my decision. There are some factors that they consider in doing this procedure... 1) how far away from the nipple is the cancer, 2) smaller breasted women seem to fair better with the surgery, 3) If any cancer shows up in the tissue right under the nipple during mx, then understand that they may have to take them. Most women lose sensation in the nipples and a large part of the chest. I have sensation in my non-cancer nipple, but not like it was. Still though, if this is an option for her, it helps mentally to save them.0
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Good Day!
It is good to see a husband seeking information for his wife! My husband has done much research for me and I greatly appreciate it!
There is a thread here called "Calling all Canadian Women" or something similar. I don't know exactly what information they may have but think this might be a place to start your search for someone in Canada.
If you have problems finding this, PM me and I will be happy to help you.
Good luck with your search. The ladies on this site are absolutely tremendous!
Sandy
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Thank you very much both for your prompt reply. This is encouraging and gives me something to work on tonight before we see the next surgeon tomorrow. I will keep you posted.
Regards
magd 1
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Good Day Magd1,
I hope your wife's appointment with the breast surgeon went well today. I am currently reading a book entitled, ""Previvors," and I came across a name noted in the book which I thought might be of help to you. Steven Narod, M.D., was at the time of the writing of the book, Director of the Familial Breast Cancer Research Unit at Women's College Research Institute in Toronto.
I believe his work is concentrated in the BRACA 1/2 area but this is not likely where he has spent his entire research career. I am sorry I do not have a telephone number for him, but wanted to pass along this info quickly since I am uncertain how time critical your wife's situation may be.
If he cannot assist you in locating a Canadian physician, I feel he can at least direct you to someone reputable who can do so. Considering his area of work, it is highly likely he has many connections to the top breast surgeons in Canada.
If I can assist you in any other way, please feel free to PM me or to post something telling what you need.
Best of luck and Kind Regards,
Sandy
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Hello Magd1;
In the above post, I failed to mention that Dr. Narod is an advocate of NSM and know this is important to your wife. I think you could google him and locate his telephone number if you still need a Canadian physician. The book I am reading is a "must read" and was published in 2010.
Again, if you need additional info about the book - it is available in digital form also - I am happy to provide you with any information which may be helpful.
I hope this helps!
Kind Regards,
Sandy
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mag- If you are considering the Mayo Clinic in Phoenix I can recommend the Arizona Cancer Center in Tucson. I had my NSM done by Dr. Michelle May. She is a wonderful and compassionate doctor and the cancer center there is amazing. I think it is wonderful that you are doing research for your wife. It can be so overwhelming in the beginning and it is easy to just shut down. She's lucky to have you for an advocate. Hope you are able to find a surgeon closer to home but if you need any information about Dr. Ley feel free to PM me.
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Thank you very much Sandy 105. It is great to feel that we have so much support from people like you on this web site. The appointment went very well today. We met with Dr. Angel Arnaout at the women's breast health centre in Ottawa. She sounded sounded very promissing and knew what she was talking about. In fact she was the only surgeon we met todate that actually reviewed all the US and MRI tests before she met with us. My wife felt very comfortable for the first time in a the past 6 weeks. The only problem is that she is booked solid till May, but she promissed to try and fit us earlier.
Thank you for the info about Dr. Naroad. I will check it out today and will buy the book tomorrow.
We are travelling to the Houston on Wednesday to meet with MD Anderson for consultation. Apparently it is the largest cancer centre in north America. This way we get a second professional opinion.
I am very greatful for the information I found on this board. It is certainly an eye opener to properly interview surgeons and not just go with the flow!
Intresting enough, Dr. Arnaout confirmed that most surgeons in Canada are still used to doing mastectomies the old fashion way. Their focus is to get the cancer out, without any plan for after surgeory treatment or cosmetic appearance. This doctor actually works with a team of plastic surgeons and oncologist, before and during the operation.
Pray for us that we reach some solid ground soon.
Regards
mag1
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mag1: You have my prayers! You will reach solid ground... I did. I just had the last of my surgeries... exchange for implants and oophorectomy... the 28th. Doing well but very sore and the ooph actually is my main source of pain at the moment. You will get the answers you need and be able to make these hard decisions over the next few weeks. Time does pass and with it comes peace and a different type of normalcy again.0
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Things have been going along pretty smoothly (NSBMX on Feb. 16) until Monday. The nipple on the non-cancer breast has been very healthy looking since surgery, but now has a small area that appears to be changing; it probably will scab over but survive nicely. The cancer side has been pretty unhappy-looking since surgery with the blue dye and bruising and the nipple itself has been looking black. However, I was hopeful since there were signs of pink underneath it all.
Sunday the nipple area started oozing a very tiny bit. Monday there was a pretty dramatic change in the appearance, with enough weeping that I had to put a dressing over it. I've seen pictures and read of nipples after NSM that have turned black and crusty, but have still turned out wonderfully. Is the weeping and oozing simply the stage before that happens? I've been instructed to slather on antibiotic or zinc ointment. It's just a bit scary to wake up with the whole nipple area looking so nasty all of a sudden.
Thanks for listening!
Surgery: NSBMX with TE 2/16/11
Diagnosis: Left ILC, 8mm, Grade 1, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -
Second area of lobular neoplasia and multiple foci ADH
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Kate - can you please post how someone can gain access to the picture forum? - I can't remember - it's Sandy105 (from above post) that would like access. (I think they contact Timtam, Firni, MBJ - do they send them a PM? Thanks.
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Mag1
I sent you a Private Message with more information which may be helpful.
Kind regards and Hugs to your wife,
Sandy
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vmudrow- For access to the photo forum they can PM MBJ, Lilah, Whippetmom, Estepp or Timtam. If they haven't posted very much they can get one of us to "vouch" for them.
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Mine is not a happy story. I had a nipple sparing prophylactic mastectomy with immediate reconstruction of a saline implant on my healthy breast Sept. 2010. About 2 wks after the surgery my entire breast and nipple developed blisters. After 7 weeks of intensive wound care, the scabs fell off revealing an moderately large hole right to the alloderm. The alloderm quickly died when exposed to air, so the reconstruction was reversed and the hole was sewed up. The surgeons are baffled with my situation because I lost skin around the nipple, but my nipple survived! ( I am athletic, slender, and follow good health and diet habits.) It has been over 3 months since the reversal surgery and 2 plastic surgeons have told me that my healed skin is too damaged to be used for reconstruction. I am presently seeking options....
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watercolorist - How disappointing and frightening for you. I hope you find a PS who can help you!
Surgery: NSBMX with TE 2/16/11
Diagnosis: Left ILC, 8mm, Grade 1, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -
Second area of lobular neoplasia and multiple foci ADH
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I was scheduled to have my drains removed on Friday because they have been tapering off and were less than 30cc/day. Today, they suddenly decided to start cranking up again for some reason (I was very focused on drinking lots of water today so perhaps that's it???) so looks like I'll have to wait until next week.
Meanwhile, the left nipple and the whole area around it is still pretty scary looking. I'm anxious to keep moving with saline fills, but I don't know if my PS will proceed until we know what's happening with the skin and nipple.
Any observations on that? Has anyone been delayed with fills while the nipple is "struggling"?
Surgery: NSBMX with TE 2/16/11
Diagnosis: Left ILC, 8mm, Grade 1, SBR Score 5/9, 0/1 nodes, ER+/PR+, HER2 -
Second area of lobular neoplasia and multiple foci ADH
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Please tell me how you came to your decisions to have bilateral mastectomies and how you felt during this decision time. My daughter is to meet with her breast surgeon inn two weeks; his nurse has been very forward about the need for, at least, the mastctomy of the affected breast that had two tumors and microcals or mets. This is such a devestating situation, I don't know what to say to her and probably end up saying the wrong thing.
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I am considering an NSM and will meet with the PS in May. I was wondering what kind of followup imaging you girls have to have done. I currently have to have a mammo and MRI alternating every six months for life and is one of my reasonings for considering this procedure. My breast do not image well on mammo's and I have other breast disease history which puts me at a higher risk of a new breast cancer in the future that is why I am considering this procedure. I am 48 and don't want to have to deal with breast cancer again.
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TinaT: I had my uni NSM surgery on Feb 2, and won't even be getting my first fill until this afternoon. At my last appt 2 weeks ago, the whole area around the nipple hurt so much when the PS pressed on it, that he recommended I wait even longer for the first fill. Now I am at the point where I have no pain at all on the breast, and basically have complete motion of my arm, shoulder, etc, and am excited for the filling to begin (I just have the 185 cc that were put in during surgery). At my previous PS visits, my nipple area also looked really gross, to me at least, but now looks pretty good. Before I had lots of puss coming out daily, especially the nipple area, but the pussing has finally stopped. Overall, I am glad I waited for the breast and muscle to heal well before filling. I'm not getting any chemo/radiation though, so I wasn't rushing to finish so treatment could begin. Maybe you have that issue to consider? Otherwise there's no harm in letting your body heal at it's own pace.
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motherofpatient: My heart goes out to you and to her. I'm have the genetic predisposition (BRCA2) and one of my daughters ended up testing positive, the other negative. I'm in the process of trying to make sure my positive daughter gets proper testing and is ok at the moment. As for how I felt during the decision process and diagnosis... confused, frightened, extremely depressed, sad, you name it... it was a horrible feeling like the end of the world. I started a post called "Lumpectomy vs. Mastectomy" and highly advise reading over some of the posts there. This is a very stressful time for her. Decisions are difficult, and individual. There are a whole host of things you have to consider in trying to decide which way to go. Me, I decided on mx because I was a very small A cup and I turned out to be BRCA2+. To attempt lumpectomy on me would have meant being disfigured. I was able to get nipple sparing mx because my cancer was far enough away from the nipple. I didn't have to have radiation, no nodes were involved. I had tissue expanders placed at the time of bilateral mx. A great portion of my chest is numb, and may stay that way. During mx, every bit of tissue that the surgeon can find is taken out and nerves are damaged often beyond natural repair. I have sensation in one nipple, but not the other. I consider myself very fortunate to have been able to get nipple sparing, and have some feeling in one nipple.
Encourage your daughter to get at least two opinions from surgeons before her decision. Some of us get three opinions. Also encourage her that everything she is feeling is completely normal. Anger.. depression.. completely lost.. terrified.. it's all normal and sometimes we go from one feeling to another really quickly because, well, we just have no idea WHAT to feel! Feel free to PM me with any questions.
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