Mastectomy w reconstruction

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AmandaMarie29
AmandaMarie29 Member Posts: 55
edited March 2014 in Breast Cancer #1
Hey ladies I am scheduled for my suregery on Dec 28th...I am really nervous but I know it is something that needs to be done! I am having a skin and nipple sparing double mastectomy with immediate reconstruction (w/expanders.) I know the nipple sparing surgery is fairly new and I wanted to know if anyone here has had it. If you have, can you give me an idea of what to expect...pain, recovery, excercise...etc? Right now I am just imagining the worst because I have no idea what to think...HELP! Thank you... :)

Mandi

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  • Calleen
    Calleen Member Posts: 411
    #2
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    You
    may be the first with the nipple sparring surgery. I had a skin sparing and used my own body tissue. My recovery was slow. I didn't take pain meds becasue I wasn't in pain. The drains are the worst!! arrgggg.. You will be more comfortable sleeping in a recliner for the first 2 weeks since you can't really sleep on your side and it's easier to get up and down. I too imagined the worst and was totally frightened by the anticipation of what my mind was telling me.
  • Kylez
    Kylez Member Posts: 3,761 Member
    #3
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    Calleen said:

    You
    may be the first with the nipple sparring surgery. I had a skin sparing and used my own body tissue. My recovery was slow. I didn't take pain meds becasue I wasn't in pain. The drains are the worst!! arrgggg.. You will be more comfortable sleeping in a recliner for the first 2 weeks since you can't really sleep on your side and it's easier to get up and down. I too imagined the worst and was totally frightened by the anticipation of what my mind was telling me.

    Just want to wish you good
    Just want to wish you good luck Mandi.

    I had a lumpectomy with rads, so, I can't offer much information.

    But, I will pray that your surgery goes well and that you recover quickly.

    KYLEZ ♥
  • AmandaMarie29
    AmandaMarie29 Member Posts: 55
    #4
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    Kylez said:

    Just want to wish you good
    Just want to wish you good luck Mandi.

    I had a lumpectomy with rads, so, I can't offer much information.

    But, I will pray that your surgery goes well and that you recover quickly.

    KYLEZ ♥

    Thank you for youe help
    Thank you for your help ladies!
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #5
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    Mandi
    I don't have any direct experience, but I had asked my doctor about nipple sparing surgery when I was considering a mastectomy (I ended up doing a lumpectomy instead) and he said that sometimes there were problems with the preservation due to the ducts and vessels that feed into the nipple area.

    I would just make sure to ask a lot of questions of the surgeon who will be performing the procedure to find out how many times they've done this and what the success rate is. I don't blame you for wanting that option. I think that was the scariest part about considering losing my breast was losing the nipple. I could deal with the rest, but somehow that was harder, for me at least.

    I want to wish you the best with whatever you decide and will be thinking about you on the 28th!

    Take care,
    Cindy
  • ritazimm
    ritazimm Member Posts: 171
    #6
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    cindycflynn said:

    Mandi
    I don't have any direct experience, but I had asked my doctor about nipple sparing surgery when I was considering a mastectomy (I ended up doing a lumpectomy instead) and he said that sometimes there were problems with the preservation due to the ducts and vessels that feed into the nipple area.

    I would just make sure to ask a lot of questions of the surgeon who will be performing the procedure to find out how many times they've done this and what the success rate is. I don't blame you for wanting that option. I think that was the scariest part about considering losing my breast was losing the nipple. I could deal with the rest, but somehow that was harder, for me at least.

    I want to wish you the best with whatever you decide and will be thinking about you on the 28th!

    Take care,
    Cindy

    I was freaked out too
    I was freaked out too over losing my nipple. Now, 2 years later, I'm not so sure why the nipple was my big hang up, but it was. I would have done anything to keep my nipple but they wouldn't let me.

    Mandi, I had a left modified radical mastectomy, which was skin sparing but not nipple sparing, with immediate reconstruction placement of a tissue expander. I was pleasantly surprised that I did not have a lot of pain. I was in the hospital for 3 days and had IV pain meds but very little. I get sick from most narcotics so I couldn't take any. I really didn't need them though. Yes there was some pain, but it was not severe. It was much less than I expected. I think the most discomfort was due to the muscle being stretched over the expander so it felt like a pulled muscle.

    My tissue expanders were filled every 2-3 weeks depending on how fast I wanted them to be enlarged and how much pain I had. Again, I didn't have a LOT of pain but it is definitely uncomfortable. I took Ibuprofen before my appointment and then regularly for several day and this made it manageable for me. I know that some of the women on here have written that they have quite a lot of pain with each fill so I guess it depends on the person. But my doctor let me go as fast or slow as I wanted. He was always willing to make the next expansion larger or smaller than the previous one, depending on how I tolerated it.


    I don't recall about exercise, except that it was a LONG time before it was allowed. Several months if I remember correctly. They should offer you physical therapy after the surgery and I found this to be VERY helpful. The therapist helped to massage out that sore, tight muscle and taught me what exercises I could do as well as lymphedema massage.

    Good luck with your surgery. It won't be as terrible as you think. You are much stronger than you've ever realized. I never wanted to need to be that strong, but now that I am on the other side I am proud of my accomplishments.

    I'll be praying for you!
    Rita
  • joy2u
    joy2u Member Posts: 9
    #7
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    Hi Mandi, I did the skin
    Hi Mandi, I did the skin sparing bilateral w/ immediate reconstruction with expanders. My doc and I talked about nipple sparing, but we were both concerned since some cancers can start in the ducts and lobes, that it might be best to get rid of the nipple all together. It really hasn't bothered me not to have the nipple. I was more freaked out about not having breasts when I awoke, but with the expanders, I still had breasts. It seemed to make it easier for me.
  • AmandaMarie29
    AmandaMarie29 Member Posts: 55
    #8
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    ritazimm said:

    I was freaked out too
    I was freaked out too over losing my nipple. Now, 2 years later, I'm not so sure why the nipple was my big hang up, but it was. I would have done anything to keep my nipple but they wouldn't let me.

    Mandi, I had a left modified radical mastectomy, which was skin sparing but not nipple sparing, with immediate reconstruction placement of a tissue expander. I was pleasantly surprised that I did not have a lot of pain. I was in the hospital for 3 days and had IV pain meds but very little. I get sick from most narcotics so I couldn't take any. I really didn't need them though. Yes there was some pain, but it was not severe. It was much less than I expected. I think the most discomfort was due to the muscle being stretched over the expander so it felt like a pulled muscle.

    My tissue expanders were filled every 2-3 weeks depending on how fast I wanted them to be enlarged and how much pain I had. Again, I didn't have a LOT of pain but it is definitely uncomfortable. I took Ibuprofen before my appointment and then regularly for several day and this made it manageable for me. I know that some of the women on here have written that they have quite a lot of pain with each fill so I guess it depends on the person. But my doctor let me go as fast or slow as I wanted. He was always willing to make the next expansion larger or smaller than the previous one, depending on how I tolerated it.


    I don't recall about exercise, except that it was a LONG time before it was allowed. Several months if I remember correctly. They should offer you physical therapy after the surgery and I found this to be VERY helpful. The therapist helped to massage out that sore, tight muscle and taught me what exercises I could do as well as lymphedema massage.

    Good luck with your surgery. It won't be as terrible as you think. You are much stronger than you've ever realized. I never wanted to need to be that strong, but now that I am on the other side I am proud of my accomplishments.

    I'll be praying for you!
    Rita

    Thank you very much for your
    Thank you very much for your help ladies! It is nerve racking but it helps to heal from people who have been through something similar to me :) My surgeon is very familiar with this surgery so I am very confident with him. He said I was a perfect canidate for this because of my age, weight, and because my breast are small. (i guess that one positive thing about being small chested!) Your BC also has to be not too close to the skin and not too close to the nipple, which my isn't. I just can't wait to get this show on the road...then I will be even closer to being done with this :)

    Mandi
  • marilyndbk
    marilyndbk Member Posts: 238 Member
    #9
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    Hi Mandi. Sending positive
    Hi Mandi. Sending positive thoughts and prayers for Dec 28th. The waiting is one of the harder parts of this journey. I was very anxious and all the input and info on this board was very helpful. I had a bilateral mastectomy with lattisimus flap recon with expanders 9/10. Recovery has been slow. I am healing physically. The mental part of dealing with having to remove breasts has been harder. I understand it had to be done to get rid of the bc. After much praying and talking I decided to have the reconstruction. I don't regret my decision but I will be glad when it is time for implants. Then if I can go further, I will have the nipple/aerola tattooed on. I have heard different outcomes of this procedure. I am grateful for the knowledge and skill of both my breast surgeon and my plastic surgeon. They and their office staff have been wonderful. In the weeks before surgery, I tried to stay calm and go into the surgery as positive as possible. As they are getting bigger, I still talk to my "girls" and thank them for serving me well for 57 yrs. I tell them that we are in it to win it, and we will be ok no matter what. Good luck and take good care of yourself. Marilyn

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