Breast Cancer Awareness Group

m HaVing a prevenative dbl mastectomy and reconstructive surgery !!!! PLEASE HELP
January 2, 2013 at 11:16 AM

At the end of this month I will be having a preventive dbl mastectomy and reconstructive surgery . I may need expander's because I am an A cup now and will be going to a C cup . I will not know if I need expander's until next week when I see the plastic surgeon . Can anyone tell me what to expect from this surgery ????? As far as pain and recovery ?????  The waiting is really getting to me . Reality is starting to set in and I am really getting scared !!! Thank You so much for any help


  • taniamorse85
    January 3, 2013 at 11:54 PM

    I have no idea, but I hope someone else in the group can help you.

    A bit of advice, though.  The font color you used is really hard to read against the white background.   You may want to change it to a darker color so it's easier to read.

  • carolasaya
    January 3, 2013 at 11:59 PM
    Good luck on that, I have not idea.
  • elfling811
    January 6, 2013 at 4:38 PM

    Please don't be scared by what I tell you, but I am going to be completely honest.  After my double mastectomy, I was on pain meds for over 6 months, but I also had severe radiation burns.  Make sure you do the stretching exercises that they give you from day one.  It will hurt like hell, but it is important to do them or you will lose mobility in your shoulders.  I had a different kind of reconstruction, and I was in the hospital for 9 days.  They took my belly fat and made them into new boobies with that a year after my double mastectomy.

    After my mastectomy, I had to have the surgeon drain pockets of fluid that accumulated under the skin for a few months after the drains came out.  I think that he had to do that 5-6 times total.  It doesnt hurt, because your skin may be numb from the surgery.  If it isnt, they will numb you for it.

    The only complication I had with my reconstruction was an inch and a half of one of my incisions opened up because the radiated skin does not heal as well as normal skin.  I had to pack the wound and it took months to heal.  

    Go to a mastectomy store and get the tank tops with drain pockets in them if you are going to have drains after surgery.  It will keep them in place and not tug on the tubes.  While showering, I used a thick ribbon around my neck like a necklace to pin the drain bulbs to.  It allowed me to shower without worrying about the drains getting pulled on.

    After your reconstruction, ask the nurses to teach you how to do the massage that helps prevent scar tissue from adhering to the implants.  It will prevent them from getting encapsulated in scar tissue which can sometimes need additional surgery.

    Make sure you take you pain meds as frequently as you are allowed for the first couple of weeks....longer if you need it.  It will make it easier to move around and you will be able to sleep better.  I also used a big wedge pillow for sleeping for about 6 months....laying down will really hurt for a while.  Be prepared for a rush of pain in your breasts when you first stand up in the mornings....that happened for me for a year after my mastectomy and then another year after my reconstruction.  I am now 14 months after my reconstruction and I am just now to the point where I am not hurting all.the.time.

    Good luck and speedy healing for you!  If you have any more questions or just need to talk to someone who has been through it, please feel free to PM me.  *hugs*

  • Patlau
    by Patlau
    January 24, 2013 at 9:59 PM

    Hi Andrea,

    Are you going to have a double mastectomy AND reconstruction at the same time? If so, I can tell you my story but only if you will have both at the same time because every surgery is different. I had it done all at once I went through it like a breeze. It has been two yrs now and I feel very blessed and actually going strong. I will still be on Anastrozole for another 3 yrs that has annoying side effects , but hey, I'm still here! I wish you all the luck and a good recovery. Keep us postponed and I follow up with you. God bless.

  • mabbs29
    by mabbs29
    March 5, 2013 at 7:03 PM

    Hi Andrea,

    I had a DM this past August. I carry the BRAC2 gene so I did it to lower my chances of getting breast cancer as well. My mother died in 2000 and I saw everything she went thru. I have two little ones at home and I would hate for them to experience losing a mother. I honestly didn't give it a second thought. I see it as a blessing to be given the option to have this surgery done. It really wasn't all that painful to be honest. I stood in the hospital one night. I couldn't shower till I had my first follow up appointment which was 4 days later. They put a drain on each side of my breast and that was what caused the most pain. I had to sleep sitting up with pillows under my arms so I wouldn't put any pressure on he drains. They actual incisions where they went in to remove all of the breast tissue were numb and 6 months later, I still don't have much feeling in that area. I want to say it took about 2-3 weeks for those to heal. It was really fast, I think. I started to get filled every two weeks, one month after my surgery. The last 2 filling were pretty painful. I was sore for about two days. I will be having my next surgery in April to swap out my spacers for the actual implants so I'm pretty excited =) Remember to buy a sports bra one size bigger than what you are right now because you will need it the day you leave the hospital. They want your bandages to stay nice and tight. I wore a buttonup top as well. Easy access ;) Take it easy and do not lift anything heavy! You don't want your incisions to open. I hope this helps ease your mind. Good luck! 

  • Aaronmarie
    April 20, 2013 at 11:05 AM

    I had preventive double mastectomy in 2006. I was positive for the BRCA2 gene. Immediate reconstruction as you know means expanders, but it means that weather you were an a or a D because they will remove as much tissue as they possibly can, to include you skin. It also means more than one surgery because once you're expanded they have to take those out and put your permanent ones in. 

    It WILL be painfull. You may have had friends who've had breast implants. They will tell you they understand. They do not! They remove ALL tissue from armpit to armpit & up to your collarbone. For the first 2 weeks you will need serious painkillers just to move. You will be amazed how much you use the muscled in that area for EVERYTHING! After the first 2 weeks it does begging to subside.

    you will have drains, a previous poster suggested the tank tops, those are great! You can also use oversize t- shirts if its uncomfortable to have things close to your body & just pin them to the material.  With immediate reconstruction you do not have breast right away. You have flat expanders that they slowly expand. This takes about 6 months. Psychologically this can make some women very depressed. Just be aware of that. Also, they've done done a LOT of work in a LARGE area, Small hematomas are relatively normal, but you will have to go in to have major ones cotterised. Always have them looked at!!

    if you have your nipples grafted go very small. As they expand they stretch so the larger you go, the more they can turn into pancakes. You may have some nerve damage, as I said its a LOT of work in a LARGE area, but all of mine healed although I did have a numb spot on my underarm for just over 2 years. 

    Dont be afraid to ask for help! You will need it. Don't be afraid to call your doctor or go in! There are no stupid questions but it Could be bad if you DON'T ask. Please feel free the ask me anything. Just message me. I'm happy to help. Good luck! You're going o be fine & it is worth it!!!!!

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