nipple and skin sparring bilateral mastectomy

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  • evelynsfirstborn
    evelynsfirstborn Member Posts: 29
    edited April 2015

    I'm sorry, I meant jilly59 not lily59. Geez, I'm not even on drugs yet -- no excuse

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Good luck, E's firstborn! You're in my prayers as you go through this.
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  • farmerjo
    farmerjo Member Posts: 518
    edited April 2015

    Haha, Jean!

    Good luck tomorrow! While you are recovering, you can peruse the picture forum...I have pics there under the same name. Or you can PM me!

    Hugs!

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited April 2015

    jean,

    Good luck tomorrow and lots of prayers!  You will do great! You will have to let me know how it goes as I am doing the same procedure on Tuesday.  I know what you mean about being a mental balancing act! Good thoughts and like you I am also nervous about the injection. Crossing my fingers that it isn't too bad for you! Stay strong;)

    Tish

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  • farmerjo
    farmerjo Member Posts: 518
    edited April 2015

    I was given Emla cream to apply to my areola the morning of surgery. In addition, once in nuclear medicine, the tech 'froze' the area with a spray. I did not feel a thing.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    I emailed the nurse navigator at my hospital and asked. It was a real relief to know that they use lidocaine for the radioisotope injection. One less thing for the mind to wander off and worry about. ;)

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited April 2015


    Thank you jilly59 and hopeful82014,  That makes me feel better to hear your experience with the injection!  I have a pretty good pain tolerance so my biopsy wasn't so bad.  I think just not knowing makes it seem daunting.  I will suck it up and get through it!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    Middleagedmomom - You mentioned your concerns about radiation (which I share!); have you spoken with your team about IORT or brachytherapy?

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited April 2015


    Hopeful82014, I think from the start I just knew that I was going to choose BMX, I just needed to come to terms with it.  Since my first post I went on to have an MRI with contrast and it turned up a new area on the same breast that my surgeon wanted to biopsy.  I then told her that I was choosing BMX and would it be necessary. Thankfully she said no.  Hopefully there won't be any new surprises when they get in there.  Because my DCIS is grade 3 she said there was a possibility of node involvement or an invasive component that it is possible to have a false negative during the biopsy.  If there are no surprises I am a good candidate for the nipple and skin sparring BMX.  And both my plastic surgeon and my breast surgeon are on board with this plan.  It was difficult for me during the first few months because I was in shock and needed to get all of the information and meet with my doctors.  As time passed and my questions were answered it felt as if a fog was lifted and my choice was clear.  Am I scared,  absolutely but anxious to move on to the next stage.  Probably more than you asked for but it just poured out of me. lol thanks for listening;)

    Tish

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  • CaliRN
    CaliRN Member Posts: 54
    edited April 2015

    Middleagedmama- my experience is similar to yours. I knew I wanted a mastectomy pretty much from the beginning and when I had my MRI it showed other areas of concern in the same breast. Turned out to be nothing. I was also terrified there would be an invasive component because the DCIS presented as a lump but luckily there wasn't. I also had a nipple sparing mastectomy and just had my exchange surgery. Good luck on your upcoming surgery, I hope everything goes smoothly:)

    -Trey

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Tish, I understand. You've done your homework and made a decision you can live with and that's what counts. I might well have made the same choice in your position and it's one I haven't completely ruled out - thus my interest in this topic. Good luck as you move forward.
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  • I_Spy
    I_Spy Member Posts: 507
    edited April 2015

    Tish I am going to be following this forum so please update with your progress. I had a lumpectomy for DCIS in September, but now I have a "fast growing papilloma" (kind of an oxymoron, since papillomas aren't supposed to grow fast) in the same breast that now has to be excised with a lumpectomy to see what's going on there. So I am getting off the bc rollercoaster (I hope!) by doing a PBMX. I went back to school and I'm graduating with my BA in writing in June; my bc surgeon has agreed to wait until after my party :). I am meeting with the ps next week, but I'm pretty sure I am not going to do a nipple sparing; strong family history of breast cancer and if I'm going to go through the pain and suffering I want as few breast cells left as possible. I wanted to do direct to implant with skin sparing, but it is so hard to make the decision on what is "right". Where is our crystal ball to tell us what will have the least recovery time, least complications, and still look decent? What did you decide on for reconstruction?

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  • farmerjo
    farmerjo Member Posts: 518
    edited April 2015

    I wanted to add - when I had my nsbmx, surgical pathology showed several areas of dcis in the cancer breast that MRI did not pick-up.

    I was a D cup and downsized to a B, which allowed for me to have direct-to-implant. The only disadvantage was the anchor incision due to downsizing, and often times (as with me), you have dehiscence which can extend your recovery time.

    I have charted my progress in the picture forum.

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  • I_Spy
    I_Spy Member Posts: 507
    edited April 2015

    Hey Jilly59 -- I know I have to ask for permission or something to view the photos, but can you provide a link to your progress/photos? Then I can figure out how to get access. Gosh what would we do without our sisters on here lighting the way?

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  • farmerjo
    farmerjo Member Posts: 518
    edited April 2015

    PM the Moderators...they are the only ones that can provide the link and grant you access. Once there, do a search for jilly59.

    Let me know how it works out!!!!!Smile

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited April 2015


    CaliRN, thank you for sharing your story.  How are you doing and are you happy with the results?  I hope the exchange went well.

    Jily59, your story is similar to a friend of mine and partly the reason why I have chosen my path.  I am glad that you were able to go directly to implant.  I was thinking I would do that until I met with my ps and he told me the reasons why I should not.  I will check out your progress on the forum.  I hope you are on the road to recovery.

    ispy, I am sorry that your your experience with DCIS was not the end of your journey.  I have decided with the help of my ps to go with tissue expanders at the time of my nsbmx. The reason I am not going direct to implant is because I am between a C and a D cup and would like to stay the same.  My PS said that I would have better results if I give my muscle and skin time to stretch.  I am okay with that now but at first I was disappointed because this is hard enough to go through knowing that I am cutting my breasts off.  I was looking for a way to have the least amount of impact emotionally.  Now that I have had time to reflect and get used to the idea I want to go the path that will lead to the best results.  I will be getting silicone implants because they are lighter and woman seem to be happier with them.  None of this is easy but I am ready.  I hope your procedure goes well in which ever path you choose.  Keep us posted because you are not alone!

    Tish

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  • I_Spy
    I_Spy Member Posts: 507
    edited April 2015

    tish that is really good info. I will see what my ps says on May 5th. When I realized that my problem was in trying to find the "good" decision -- like between Disneyland and Six Flags -- things got a tad easier. Now I'm just trying to collect all the data so I can make an informed decision.

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  • Sulev21
    Sulev21 Member Posts: 17
    edited April 2015

    hello on Tues I had bilateral mastectomies with nipple sparing due to DCIS. I have tissue expanders in and the Dr started them very flat, He said that was because he wanted my skin especially the nipple are to stretch. It is painful especially online side. Hope the results is worth it!

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited April 2015

    Ispy, you are doing the right thing on getting all of the info you can. Good luck in your decision making. I know for me, once I had a plan in place it relieved a large part of my stress.

    Sulev21, hang in there! And from what I hear it is important to manage your pain and don't do too much before you should. I will be thinking of you. Hope it gets better soon;)

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  • Sulev21
    Sulev21 Member Posts: 17
    edited April 2015

    Thanks Middleagedmama, I had a bad night last night and this morning. I think I did too much yesterday ( was actually feeling pretty good.

    Does anyone have recommendations for an alternative to a surgical bra? The one I currently have is very uncomfortable and the elastic bothers me. I had a rash from the antiseptic wash before surgery and still very sensitive all through my trunk area. Dr said I can try a sports bra that opens in the front. Any ideas

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  • farmerjo
    farmerjo Member Posts: 518
    edited April 2015

    Sulev...go to Walmart and get 100% cotton front-close (hooks) Fruit of the Loom. They can also be found on Amazon.

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  • Sulev21
    Sulev21 Member Posts: 17
    edited May 2015

    jilly59. Thanks. I just ordered them!

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  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    Sulev- once I no longer needed the front-close, I purchased Fruit of the Loom 100% cotton one-piece sports bra. They have removable pads, and they were easy to 'pull' on from my feet.

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  • Sulev21
    Sulev21 Member Posts: 17
    edited May 2015

    Jilly I got the one you recommended. I used to wear a 34 so I went up to a 36. After wearing it for a while I realized it was too tight especially near the drains. Will save it but getting a 38 at least if I only need it for 1 more wk it will be worth it. The $ 8.00 was a bargain. Thanks for the info again. Also the elastic dies not irritate me.

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  • CaliRN
    CaliRN Member Posts: 54
    edited May 2015


    Middleagedmama-

    I am doing really well, starting to feel normal again! It's been 4 weeks and I am really happy with my results. I had the Natrelle 410 implants put in at my exchange and they are looking really good. I also had fat grafting at the same time. I was not happy at first but as the days go by they are looking better and better. Unfortunately I am seeing some rippling on my right side which is a bummer because I thought these implants would be so firm they wouldn't ripple but it is minor at this point. My nipples are also not symmetrical right now but I have noticed them becoming a little more even. Overall I think they look really good. I have more cleavage than I did preoperatively and I had a breast augmentation before I was diagnosed. They are also really soft which I wasn't expecting and they are starting to move more and more. They do not, however, move the way natural breasts do but I am ok with that. I plan on posting pictures in the picture forum soon...just a little nervous. Have you decided on your route?

     

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited May 2015

    caliRN,

    I had my surgery last Tuesday and am just now starting to feel somewhat like myself. I had trouble with the anesthesia from waking up and a ton of nausea. They are under control now. My husband has been my saving grace. He isn't afraid to look at me or touch me so he has helped me stay clean and comfortable. I had the NSBMX with tissue expanders.at surgery they filled me to 300 on each side. On Wednesday the ps took 50 out of each breast because he didn't like how the skin was responding. My skin and nipples are doing well. I had 4 lymph nodes removed and they were negative and no residual cancer. Had some blockage in my drains but that is fixed now. Hopefully will start my fills in 10-14 days

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  • CaliRN
    CaliRN Member Posts: 54
    edited May 2015


    Middleagedmama-

    Congratulations on being done with your surgery! The worst is over. I had 100cc put in my expanders during my NSBMX but was hoping for more so at least you will have less fills to do. After a month or so I started going to the lymphedema clinic and to physical therapy which really helped during the expansion phase with my range of motion and discomfort from the fills. For your next surgery ask for a scopolamine patch before surgery it really helped me not have any postoperative nausea. Get lots of rest and take it easy!

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  • Sulev21
    Sulev21 Member Posts: 17
    edited May 2015

    I think I posted a few nights ago but must have fallen asleep while doing it because I can not find it.

    What I wanted to say is that I wish I would have found this site prior to my surgery which was on 4/21. It would have helped me considerably. Other than what my Dr told me and the research I did, I did not have anyone's experience to go by. My mother would of course tell me her experience However I had to remind her that was 40 yrs ago! She was an inspiration to me since she is a true survivor (90 yes old and still kicking)

    You ladies are an inspiration! I also realize how lucky I am not to have lymph node involvement and not need chemo or radiation. Question I do have is I am supposedly having the drains removed tomorrow. Can't wait since they are very uncomfortable. Will I feel a difference right away? ( at least within a few days.).

    Also I have expanders in that have not been filled yet. I am assuming that will also be very uncomfortable! I have been able to manage pain with Tylenol during the day and stronger vicodin at night. I would like to get off the pain Medsl!

    Typically how long should I figure I would be I this next stage? Thank you. Sue

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  • middleagedmama
    middleagedmama Member Posts: 46
    edited May 2015


    CaliRN,

    Thanks for the scopolamine suggestion I will definitely do that!  I am glad my fills were started during the surgery but it is hard to know how much of my discomfort is from the expanders and what is from  the surgery.  The pain is definitely getting better. I am just using the pain meds for night time now.  You sound like you are doing well, that is great to hear!

    Sulev21,

         I was quite lucky to find this site at the time I was diagnosed and it is truly a life saver!  Congrats on the clean nodes and no rads or chemo!  I still have my drains so like you I am not sure how that ill feel to have them removed. you are going before me so I will look forward to your wisdom.   I do feel pressure that I am assuming might be coming from my expanders and have had some muscle spasms but not unbearable. I have read that the worst pain is after surgery so if you can handle where you are at now i think it won't get any worse.  Good luck on the drain removal.  When is your first fill scheduled? My ps said probably 10-14 days for me but I will see him Thursday and will maybe know more. Hopefully my drains will come out soon. Good luck!

    Tish

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  • Sulev21
    Sulev21 Member Posts: 17
    edited May 2015

    middleagedmama

    Drains removed - didn't even know my PS took them out! Guess it helps to have my breasts still totally numb! He also began adding some saline to start the expansion. Discomfort to about the same around the chest area however the area where the drains exited feels better. Dr also said I can now take advil. When I got very uncomfortable I took 2 Advil and 1 Tylenol and it made a big difference! Save the stronger stuff for night if I need it!

    Next Fill is in 14 days again! Good luck on Thursday!

    Sue

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