• sandy sandy
    December 13, 2008
    Breast reconstruction vs none after bilateral mastectomy
    sandy sandy
    December 13, 2008

    Breast reconstruction vs none after bilateral mastectomy?? (age 65, active and in good health, otherwise).  Am having trouble making a decision here -- am leaning toward no reconstruction. 

     

    Would appreciate feedback from women who had no reconstruction -- do the scars lessen over time??  Was the adjustment period a challenge?  Realize everyone handles things differently, but would appreciate info from someone who's been there.

    READ MORE

FROM OUR EXPERTS

  • PJ Hamel
    Health Guide
    December 13, 2008
    PJ Hamel
    Health Guide
    December 13, 2008

    Sorry, probably not helping here, as I had single mastectomy with "body" reconstruction (tram-flap). Got superb results; the recovery wasn't bad, a couple of weeks. I'm 55, was 47 at the time. If you're fairly small-breasted to begin with, I understand from friends that the transition isn't too traumatic to have no rwconstruction, and not wear a prosthesis. It totally depends on how you feel about your body, and how it impacts how you feel about yourself. I wouldn't let the process influence you; the surgery/recovery will be over relatively quickly no matter what you choose. But consider the long-term — will you be happiest being flat? Wearing a prosthesis? Or having reconstruction? Luckily, these days, we have many options. Best of luck, I know this is a tough decision- PJH

  • PJ Hamel
    Health Guide
    May 01, 2010
    PJ Hamel
    Health Guide
    May 01, 2010

    Hi - Unless you send Amy a direct message (click on her name to do so), she unlikely to see this message, since her last post was nearly a year ago. Personally, I had a TRAM flap and am very pleased with it - if that helps any? Thanks for connecting here - PJH


FROM OUR COMMUNITY

  • Angi December 13, 2008
    Angi
    December 13, 2008

    I can only tell you my experience that included 2 seperate mastectomies, and two attempts at reconstruction that failed the first time.  i've had 8 breast surgeries and I still am not done yet cause my cancer came back mid-reconstruction.

    What I can tell you is that some of my many scars have faded a little, but not a whole lot - they will not disappear entirely.  I debated about no reconstruction but I was tired of carrying aroung 3+ pounds of breast prostetics.  I was embarrassed being flat chest...of course I'm only 34 so I felt like I lost part of my womanly curves.  I just wanted to look and feel as normal as possible again.  Though my recon process has had it's ups and downs - I truly do belive it saved my life.   without it the return of my cancer after just 3 years would not have been found.  The surgeries really aren't that bad, but it is a decision that only you can make.

    Hopefully someone who skipped reconstruction will come forward and tell you their side of the story.

    Good luck!

    Angi

    READ MORE
  • Kelly February 17, 2009
    Kelly
    February 17, 2009

    Sandy,

     

    If you have not already made your reconstructive plans, I'd love to talk to you.  I also went through about 12 doctor visits at least, and was about to have the implants in, when we miraculously found Dr. Alan, who performed the D.I.E.P surgery on me.  I have real natural breasts now with nothing fake in me and they look amazing and feel wonderful.  I wish so many other women knew about him.  if you want to call me you can.   214 641 8788  I am 35, had stage III and had both breasts removed.  I went through the chemo, radiation and all of it.  

     

    Sincerely,

     

    Kelly Gowan

    READ MORE
    • dearsis
      July 22, 2010
      dearsis
      July 22, 2010

      Hi Sandy

      I had a bilateral mastectomy in 2004. thats been about 6 years. Now I am considering getting reconstruction. Hope I didn't wait too long. But first I want to find out about the procedure, like do they do both breasts at one time, how long will the surgery take and how many surgeries.  I'm getting kinda tired of wearing prothesis.

      By the way, what is D.I.E.P ?

      READ MORE
    • Kelly
      July 22, 2010
      Kelly
      July 22, 2010

      Hello.   I am actually Kelly Gowan.  I think I was just responding to a lady named Sandy at that time.    I am the one that who wrote that info.    I am sorry to hear you have had to go through all this as I did.  I know it is no fun.  I don't think you waited to long at all.  I remember when I went in to see Dr. Robert Allen, the one that is a miracle surgeon that did my D.I.E.P surgery, there was a lady in there that had a masectomy a long time ago and had finally come to a decision and was ready.  she was a little bit older and she was so excited about it.  Without looking up the medical answer, I can tell you that the D.I.E.P. surgery for me was basically, they removed my fat roll and reconnected all the vessels to my chest and created breast mounds.  Let me tell you - they are beautiful. They are real, grow with me, aren't artificial, soft like the old ones, perky, and my husband says he loves them even more.    I could not be happier.   Now I will say that the surgery is very long and the recovery is as well, but it is COMPLETELY worth it.  I would do it all over again.  Dr. Allen pioneered this surgery and in my opinion he is the best.  But we had to fly to Charlotte NC for the surgery.  He does them either in NC or in New Orleans.   We picked a beach house in NC, and recovered on a goregeous beach house with all glass windows, it was AMAZING and I loved it so much.  I think I was there for a total of almost 2 weeks, maybe a bit shorter.  If you want me to send you pictures and you want to talk.  You can call me at 214 641 8788 or email me at kelly@ayavastaffing.com.  I highly recommending getting reconstruction.  It makes you feel amazing to be like you used to be only better :) 

       

      Sincerely,

       

      Kelly Gowan

      READ MORE
    • dearsis
      July 22, 2010
      dearsis
      July 22, 2010

      thanks Kelly. this was a lot of help.  I might call you in the near future.

       

      READ MORE
    • PJ Hamel
      July 22, 2010
      PJ Hamel
      Health Guide
      July 22, 2010

      Hi - You might want to read our post on autologous reconstruction, which outlines the various types of body tissue reconstructions you can have. I had a TRAM (7 hours surgery, with one short surgery a week later). Love the results! Was out of work for about 2 1/2 weeks, and recovered uneventfully. Take care - PJH

      READ MORE
    • dearsis
      July 22, 2010
      dearsis
      July 22, 2010

      Hey Thanks PJH

      Im going to check this out.  Sounds like the surgery isn't that bad.

       

      You all sure have been a lot of help. 

      READ MORE
    • Stephanie B. Ward
      September 28, 2010
      Stephanie B. Ward
      September 28, 2010

      Hello Kelly, I recently found Dr Allen's information and have an appt with his office in Charleston, SC mid dec. I have already had two seperates sets of saline implants and have developed lymphedema as well. Can you please describe in more detail what I should expect. I know this may also sound crazy, but do you have any pics before and after that I may could view as well. While I am excited I am nervous as well. I feel that having my own natural fat used to create breast is whats best as these implants are painful. Please get back with me as soon as you can please. I didn't see where he has an office in Charlotte either. Or is it that they simply performed the surgery in a Charlotte hospital? I am actually not seeing Dr Allen but another surgeon who also works at his other four offices name Dr Magda? I look forward to hearing from you. Be blessed. My email address is wardsb9232@mbc.edu....Thanks

      READ MORE
    • Phyllis Johnson
      September 28, 2010
      Phyllis Johnson
      Health Guide
      September 28, 2010

      Stephanie, you are correct.  Dr. Allen is in Charleston, SC.  Charlotte may have been Kelly's least expensive flight to the area.  I know two people who had DIEP reconstruction there, and both were very happy with the results.  A plastic surgeon I talked to who does not specialize in DIEP told me that it is important to have a surgeon who does this type of surgeon regularly because it is more complicated and risky than other types of reconstruction because the doctor is connecting tiny blood vessels.  Although the surgery takes a long time, the women I know who had it recovered faster than women I know who have had TRAM type reconstructions where muscle is moved.  Dr. Allen's office can show you pictures, but keep in mind that they will choose their success stories.  

      READ MORE
    • Marily
      July 07, 2011
      Marily
      July 07, 2011

      I had a bilateral mastectomy on February 8, 2011 followed by 33 rounds of radiation.  I was told that the TRAM flap was the best reconstruction for me.  I am small but my PS says he can get me back to the same size I was before.  I was only an A cup but it is better than the flat chest I have now!  How bad is the TRAM flap surgery?  How long after radiation did you wait to have reconstruction?

      READ MORE
    • PJ Hamel
      July 07, 2011
      PJ Hamel
      Health Guide
      July 07, 2011

      Hi Marily - I had a single TRAM, and it wasn't bad - I could have been back at work within about 2 1/2 weeks. A double will probably have a longer recovery period. I had it the same time as my mastectomy, then had chemo and radiation afterwards; so not sure how having just the TRAM, without the mastectomy, affects recovery times. I'm betting you'll get good results with a TRAM; I've been very happy with mine. It feels good, "hangs" right, and all in all looks very natural. Best of luck to you - PJH

      READ MORE
  • amy
    amy
    July 21, 2009
    amy
    amy
    July 21, 2009

    I am 40 now and just had a bi-lateral on 5/18/09.  This is my second go around with breast cancer, having been diagnosed when I was 25.

     

    The first one was simple.  Lumpectomy and radiation.  I made it 15 years.

     

    When I found out the second time, I really thought it would be a similar process.  But the cancer had come back on the same side and a lumpectomy and radiation were not an option.  The second challange in making my decision for reconstruction is that I am diabetic.

     

    I've been told that implants aren't ideal because of the radiation all those years ago, my skin won't stretch.  The more I read about the other processes, the more I am leaning to either learn to wear prostetics or go without.

     

    The other proceedures could fail and I would have to go through the whold process of a mastectomy again.  I don't think I can do it again.

     

    I know that many women feel like they have lost most of their femininity and I understand that because I feel the same.  But remember, your breasts or any other body part for that matter, does NOT define who YOU are.

     

    Just please do as much research about the types of ps that are available and really consider if the risks are worth really worth it.

     

    Good luck to you in whatever you decide to do.  God bless!

    READ MORE
    • PSF
      PSF
      May 01, 2010
      PSF
      PSF
      May 01, 2010

      Amy,

       

      I am wondering how you are doing?  It sounds like you did no reconstruction?  I am in a similar position.  Stage I in L breast 17 years ago.  Just found I have DCIS in same breast.  Am BRCA2, so they tell me bilateral and ovaries must come out too.  I don't want implants, even though the ps thinks ok, since my prev. radiation was kind to my L breast.  Am going to another ps Tuesday to check out whether flaps a possibility.  Otherwise, I will have to go flat.  Just was wondering if you did have any kind of reconstruction or not?

      READ MORE
    • Amy
      Amy
      May 09, 2010
      Amy
      Amy
      May 09, 2010

      I am still going round and round in my head.  My ps told me that my only real choice is implants and it will work, however it will be a very long very painful process.  When I think about all of the pain I have already been through in the year 2009, it scares me to death.  Unfortunaltel on top of loosing my breasts in May, I had a stroke in November and am still being affected by side affects from that.

       

      My pshcyologist keeps reminding me that the pain will only be temporary and the end result will be worth it.  This time around there will be 4 surgery sites, 2 in front and 2 on my back.  Then there will be ports inserted in each breast so that air bags can be expanded to stretch the skin.  As much as it scares me, I am afraid that if I don't go through the process, I will regret it later.  I just haven't felt like a complete person since they were removed.  I know that is rediculous because breasts don't make a person, but having them for 40 years and then one day they are gone really does have a huge impact on a person.

       

      The second part of the decision of having it done is that there will need to be someone here to take care of me during recovery.  I don't really have anyone to do that for me.  After my stroke my mother came to help take care of me.  The damage the stroke caused in my brain along with the other medical problems I had in less than 9 months really affected my personality and my mood swings.  My mother couldn't handle it .  She ended up calling me a hateful bitch and walking out on me and I haven't seen or talked to her since.  If I can get hospice arranged where someone could come and check on me daily and change my bandages then everything should work out.  That is just another aspect I have to research before I make my final decision.

       

      I hope you are doing well and are able to make the decision that is right for you.  Good luck and God Bless you.  I would love to hear from you again.  Thank you for contacting me.

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    • PJ Hamel
      May 10, 2010
      PJ Hamel
      Health Guide
      May 10, 2010

      Amy, I'm sorry you're having to go through this additional surgery. But you know yourself- and it sounds like it's really going to help you emotionally. Please be sure to work with the hospital to arrange for help when you need it; there are lots of people who don't have family (or family nearby) who go through tough surgeries, with the help of the medical system already in place (visiting nurses, home health workers, etc.) Best of luck to you - PJH

      READ MORE
  • lia
    lia
    December 13, 2008
    lia
    lia
    December 13, 2008

    Sandy... I had a double mastectomy 5/08 with immediate reconstruction...I had my expanders removed 9/18..I now have 34C?36B silicone implants.. will have 3rd and final surgery soon for nipple reconstruction . I am 47 years old... I was very large breasted before breast cancer..really was how I was defined my whole life...It is your decision..but for me it's a no brainer..you are young..I never where a bra now and I have firm little breast..my kids say it took 10 years off of me..and they can see my face now.  expansion process is not bad,..gives you time every two weeks to ask a doctor questions that make you crazy..the replacement surgery is an outpatient thing..in at 8 a.m. out by 1 p.m...sore again for about a week ,,on antibotics again.. but that's it. I scar very badly..actually keloid a bit with all cuts etc...yes I can see my scars.. they will fade a bit more I hope..and I put McDerma on them ..that decreases scaring..(over the counter)..please before you make your final decision meet with the plastic surgeon and ask to see their photo album of before and after pictures..they are real people ..your PS has done surgery on..if you don't like what you see..ask questions..or go to another PS depending on where you live...good luck.. I really can't give you a negative , right now at least..

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  • Florence July 18, 2009
    Florence
    July 18, 2009

    I had a dbl mastectomy on April 2nd of this year.  I'm now going through chemo and, following that will have 5 weeks for radiation.  I am not even ready to think about reconstruction because I can't bare the thought of any more surgery - yet - or ever.  My scars are still obviously fresh and I'm concerned about that.  I am 64 yrs. old and other than the cancer healthy and active.  I am leaning toward no reconstruction at this point, but life is a moving target and I'll have to see how I feel in a year or so.

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    • Dorbeth
      July 27, 2012
      Dorbeth
      July 27, 2012

      I will be 70 in Dec so I'm not young like many others who write about breast reconstruction. I had breast cancer 17 yrs ago & went thru saline  then silicone implants. Now I have invasive lobular breast cancer & I'm trying to decide if I really want a TRAM flap. I just had a CT scan & I'm not a candidate for DEIP reconstruction. Are you happy you did not have reconstruction????? You can email me at dorbethmil@msn.com

      Thanks

      READ MORE
    • Phyllis Johnson
      July 28, 2012
      Phyllis Johnson
      Health Guide
      July 28, 2012

      For a lot of complicated reasons, I did not have reconstruction, and I have been mostly happy with that decision.  I am comfortable with the way I look, and I avoided a long surgery and its possible complications.  The only medical downside to not having reconstruction for me is that I am lopsided, so I sometimes get shoulder pain from the imbalance.  For most people a TRAM flap goes well, but it is a long surgery, which means a long time under anesthesia.  Ultimately, only you know how important balance is to you and how much surgery you are willing to undergo to achieve it.  If all your doctors think you are physically up for the TRAM surgery, then what matters is what you want to do.  Don't have reconstruction to please anyone else, and don't decide not to have it just because of your age.  Reconstruction is a very personal decision, and there is no one right answer.  Once you collect all the facts as they apply to you and some stories from those who have been through this process, you will be able to make the best decision for you.  Let us know what you decide. 

      READ MORE
    • PJ Hamel
      July 28, 2012
      PJ Hamel
      Health Guide
      July 28, 2012

      Hi - I had a TRAM flap reconstruction 11 years ago, and I've been very happy with it. The surgery took about 7 hours, and the recovery was miserable for about 24 hours; once I got through that first tough part, though, I didn't really find it painful, just awkward. I could have been back at work in 2 weeks, but I took 3 weeks off, and probably better that I did, so I didn't push myself too hard.

       

      As Phyllis says, if your doctor thinks you're up for it, physically - then you'd want to consider it strongly. I never have to worry about a prosthesis; I look perfectly natural in my clothes/bathing suit, and my breast looks good enough that I don't feel awkward changing in the locker room. Downside? Numbness under my arm and on the surface of my reconstructed breast, but I consider that a small price to pay... Good luck with your decision - I know it's not easy. PJH

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    • Cmac
      June 04, 2014
      Cmac
      June 04, 2014
      I am 61 and opted for no reconstruction. My busy lifestyle didn't have time to recover from more surgery. I just wanted to get on with life. I don't have any regrets but it's hard to get used to clothes not fitting. I only wear tshirts around the house; everything else is a button up. I'm only 4 months out from surgery but I don't think I will ever get used to the way I look. I will say that not as many people notice as I think they do. READ MORE
    • PJ Hamel
      June 05, 2014
      PJ Hamel
      Health Guide
      June 05, 2014

      Thanks for your feedback here. Time heals, it really does; and while you can't go back to where you were, you do settle in, little by little, to your "new normal." Have you worked with a professional bra fitter? These ladies can do wonders, working to find the best bra to go with your prosthesis; I recommend the process highly. Best of luck to you as you continue with your recovery. PJH 

      READ MORE
  • Michele244 March 21, 2012
    Michele244
    March 21, 2012

    49yr old , I had a bilateral mastectomy 2/21/12. Im in my 4th week, and I cant begin to describe the pain I face every single day with the expanders. Its the pressure under my muscle and the sharp pains under my arms. My PS has prescribed to the point she has sent me to a pain mgmt clinic to help me.

    Robaxin during the day with Ibuprofen / Dilaudid and Valium at night.  Im terrified of my first fill and I have days when I just want them out...The meds have not fixed the issue... Ive had a few Seromas and I wonder if this could be causing me so much pressure and pain? Tomorrow Im going to BEG my PS to do one fill then give me my permanent implants. If youve found something to relieve the constant heavy pressure.. PLEASE share with me!! :)

     

    Have never experienced so much depression in being in so much pain...

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    • PJ Hamel
      March 22, 2012
      PJ Hamel
      Health Guide
      March 22, 2012

      Michele, I'm so sorry you're having to go through this - I hope the pain management clinic helps. Seromas, since they add pressure, could increase your pain, it's true. Hopefully they'll abate, the farther out you are from surgery. I hope you get some relief soon - PJH

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    • Phyllis Johnson
      March 22, 2012
      Phyllis Johnson
      Health Guide
      March 22, 2012

      Michele, I'm sorry you are having such a hard time.  In another thread, a reader said that muscle relaxants were the medicines that helped her most with pain after implant reconstruction, so you might ask your doctor about whether it is safe to increase your Robaxin and/or switch to a different muscle relaxant.  Your idea about going with a smaller implant to have the process completed sooner is also a good possibility.

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    • Michele244
      March 22, 2012
      Michele244
      March 22, 2012
      Thank you thank you for your support, I really needed it tonight. Sometimes just letting it out and finding a source to communicate if nothing else, will keep you sane. Update- went to see my PS today for the swelling I thought I was experiencing... She sent me over to Northside BCS to have my surgeon who performed my surgery do an ultrasound needle aspiration to remove the fluid.. You won't believe this.. 180cc's of excess fluid!! Somewhat relieved and praying the compression bandage they put on will eithe stop or slow it down..... can you believe 180cc's??? This is a great source of information here online and I wish I had seen it earlier. God bless and good luck to all of the current and future patients this week. I'm praying for you! Michelle READ MORE
    • PJ Hamel
      March 23, 2012
      PJ Hamel
      Health Guide
      March 23, 2012

      Oh, that's good news Michelle, that you were able to get some relief. And no wonder - that's a LOT of fluid! Asyou said, I hope the compression bandage works - it should. And I hope as you continue with this process it gets easier. There's light at the end of the tunnel - keep walking, you'll get there! Wink PJH

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    • Phyllis Johnson
      March 23, 2012
      Phyllis Johnson
      Health Guide
      March 23, 2012

      Michelle, I am glad you are finding HealthCentral helpful.  I hope draining the fluid and using the compression bandage will relieve your pain.  Stay in touch.  You will probably have other questions that arise as you finish up your treatment.

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  • Joy
    Joy
    August 07, 2011
    Joy
    Joy
    August 07, 2011

    For more information from people who have had bi-lateral mastectomy without reconstruction, check out: www.breastfree.org.

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    • Phyllis Johnson
      August 07, 2011
      Phyllis Johnson
      Health Guide
      August 07, 2011

      Joy, thanks for the link.  I looked over the site, and it looks like a great resource for people who don't want or who can't have reconstruction.  There are quite a few reasons why women might not want to have reconstruction right away.  My doctors recommended against immediate reconstruction because I had a high chance of recurrence.  Later when the doctor said it would be OK to talk to the plastic surgeon about it, I was used to my new shape and didn't want to have more surgery.

      This is such a personal decision, and it can help to hear other people's decision-making process.

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    • shirleysangels22
      December 11, 2011
      shirleysangels22
      December 11, 2011

      Hi Joy, I am 68 yrs young and had a double mastectomy om July 28TH 2011. My husband of 43 yrs and I agreed not to have reconstruction. The point would be what? He said he couldn't see me going through another painful surgery. I'm still having pain across the chest like 10 ace bandages pulling real tight. I do streching

      every day and massage the area. Hot showers seem to also help. I am one of the luck ones. No chemo and no radiation. I had a low oncotype score of 13. Lucky

      number 13 for me. It's funny but, when I go out without my( props ) nobody seems to care or notice. It's all in your state of mind. If people care they don't matter. Stick with the people that care and don't matter. Best of luck to you whatever you plan to do. Only you can make that choose. 4 1/2 months out and so very happy to be here. Shirley D 

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    • PJ Hamel
      December 12, 2011
      PJ Hamel
      Health Guide
      December 12, 2011

      Shirley, thanks for adding your feedback; I'm sure Joy will find it helpful. And hold onto that great attitude - we're happy you're here, too! Smile PJH

      READ MORE
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