Monday, April 11, 2011

Breast Reconstruction Revision

Many breast cancer patients who have reconstruction end up having revision surgeries.  You are warned about that at the beginning of the process (or you should be).  It might be as simple as a scar tweak here or an adjustment there, or it could be more involved, like cleaning out contracture.   Implants have a median shelf life of ten years, and sometimes need to be replaced.    People with one natural (aging) breast often have surgeries to keep the twins matching.

I knew all along that many more surgeries would be in my future - me and Joan Rivers, we have our plastic surgeon on speed dial.

So, now I am planning my first revision.

But, it's not really a revision.  I'm starting all over.

I know, right?  You are shocked.  You remember how happy I was with my post-surgery results and are wondering what kind of foolish, Joan-esqe body dysmorphic dysfunction is going on with me.

No dysfunction here, unless my plastic surgeon has it too. Once the swelling went down and the implant settled into its spot, the results look quite different.   It's kind of amazing how much post-surgical swelling there is - and how natural it looks, not like swelling, but kind of like a breast.  Once that's gone, you see the final result.

Like Joan on her birthday, I'm less than pleased.

My plastic surgeon, who I saw last week, also is not pleased.  I have no inframmary fold, which we knew would happen, although I couldn't really picture what that meant.  It means I have a mound on my chest rather than anything that even resembles a breast.  There is puckering in the scar and some odd lumps along the cleavage, so wearing anything that shows cleavage also reveals I had cancer.  (The good news is at 53 with grey hair, nobody is really checking out the cleavage anymore.)  Also, the implanted side has odd bulges at the bottom, like a water balloon squeezed in half.

The reconstructed size is also smaller than the real side.  It will always be flatter - they can't make them pointy like real Material Girl  breasts. But, it's kind of shrunk in on itself now and I have an empty  space in the tip of  my bra.  In clothes, you can't really tell so I am relatively satisfied.  But, as time goes by, it is becoming more noticeable, and in tank tops this summer, if you know to look, you'll see the bottom of my "breast" looks odd - the clothes will hang a different way, although you'd have to be super-observant to notice that.

My plastic surgeon says I got the minimum desirable result, which is that in clothes, they look even.

He suggested that we start all over again.  Take out the implant, put in the expander and redo it.  That would mean more drains, more expansions, another hard lump in my chest for months.

One of the problems was the original expander had rotated in me and didn't expand the proper places.  When he first suggested a redo, back when he first became my plastic surgeon, (and after I had had the expander in for an entire year), I was opposed to it.  I really didn't care what my result was going to be, as long as I could get dressed normally, could look decent in clothes and get that hard rock out of my body.

Now, a  few months down the road, I guess the memory of the expander has faded and my attitude is different.

And, you know, now I have to look at the results every day.  I couldn't imagine it before - now it's reality.

So I am going to try again.

He has promised me one thing and one thing only:  it won't look worse than it does now.  He is not certain it can get better - that the fold can be created or that the lumpiness will be removed.  But, it's worth a try.

I'm going to wait until the end of summer and then plan the surgery.  I would like one summer or normality - it's been a few years.  If I'm going to have the expander again, I want to be wearing winter clothing and jackets, and not tank tops.

I also need to wait for my shoulder to heal before I have another surgery.  Given my slow progress there, it might be 2012 before I can think about it.

Speaking of reality, if you want an example of what I'm talking about, you can find it here:  Scar Project.  It is sad and beautiful.   You will see both unreconstructed and reconstructed women.  A few of the reconstructed women have much better results than I have, and I'm really happy for them - they look almost normal.

My results most resemble the lovely woman with the brown hair sitting in front of the bathtub with Christmas lights draped on them - she has what appear to be newly grafted nipples. (I didn't do nipples because the two breasts don't match and I thought it would be grotesque.)  As you can see, in her right breast she has lots of lumpiness and not much inframmary fold either.  The other women who has results similar to mine is the woman with long brown hair sitting between the two chairs.  She has no inframmary fold either and the kind of bulging I was talking about.

I"m really proud of those brave women who show the truth of mastectomy.  If my job wasn't sensitive, I would show too.  And, if you look, you will see why revisions and tweaks become important.

All of that said, I'm still extremely glad I didn't take off my healthy breast for the sake of symmetry. The numbness and "feel" of the reconstruction is unpleasant.  Because I have no breast tissue, it feels like there is something pressing against my chest wall all the time -  I can feel it moving against my ribs.  Of course, the skin is completely numb and that is quite annoying - I'm glad it's only one side, I really think it would drive me batty to have my entire chest numb.  Finally, that crazy maddening itch I've had since the mastectomy - well, it's still there.  I thought phantom pain and itching eventually went away but so far, no luck.  It is unbelievably frustrating having an itch you simply can't scratch.  I still try but I can't feel anything so there is no relief.

When the doctor takes out the implant, I'm going to tell him to scratch around in there but good.  Dig in.  Maybe he can get it.

So, my first revision?  A complete re-do   Just like Joan's face.

I hope it comes out a bit more natural..  .


  1. I did take a look at the book Scar Project, which, of course, made me cry. It's still so hard for me to believe how young these girls are -- how they deal with it. I'm one of those who chose double mastectomy with no reconstruction. My hat is off to you. I'm not that brave and I can't even begin to tell you how much I hate pain and drain tubes. Bless your heart for even thinking about surgery again. -Megan-

  2. Ann - Really sorry to read about your unsuccessful result... and really feel for you having to start the recon process all over again. Yes, you are right, this is a reminder that recon is a 'process' - an unknown number of surgeries and revisions to get the result you want. But I think your determination shows that you do want this and I hope that second time works out for you. Best wishes, Sarah

  3. Oh, so sorry you have to endure more procedures and surgery. I was under the mistaken assumption that reconstruction would be the final chapter in my "cancer journey" and it's just not the case. I don't mind the revisions, but am impatient for the final result. So much for everyone telling me the bright side of getting BC is getting new boobs!

  4. Ann, prior to my reconstruction, all I heard was how wonderful it will look, how happy everyone is with theirs. So, imagine my surprise when i was unhappy with mine. I thought I was the only one, kept questioning if I should just let it all be and not go through surgery again, purely for cosmetic reasons, but in the end I did. Had to, it was on my mind constantly and now, I'm so glad. That's a long way of saying, hang in, do what makes you happy.

  5. New here via the kindlereport blog. Your post & the comments above make me glad I opted out of reconstruction - have worn a single prosthesis for 3 years now & am very happy. In winter when I wear a lot of layers I don't always have to wear the prosthesis, but I've found a good one that totally balances the remaining breast so I usually forget I have it on during the day. And if it does bother me (usually if the bra is too tight), I can take it off. - valleycat1

  6. Hi can someone tell me if insurance will cover a revision to my implants as my radiated slept breast is now very much smaller then my right. I am 10 years out from first diagnosis and have had my implants in since 2004. However have since changed insurance

  7. Hi Michelle,
    Your insurance should cover it for the rest of your life. Check out the Women's Health and Cancer Rights -

    Thank goodness for congressman who love boobs!

  8. interesting about the insurance. I had a tram flap reconstruction over a year ago...and I hate them. I feel so ugly. And they are so much heavier, and too big. It's a mad mess.

  9. so glad I found this site, been post opt mastectomy for 15 months and had reconstruction a week ago...can we just say all my dreams of a "decent looking" breast have been dashed. I have a monster staring at me and I cant find Monster killers in the phone book. I am sad, depressed mad or whatever label you want to put there.

  10. I too had double mastectomy with expanded & now cohesive gel implants and am not happy. I have two little dog ears at bottom of cleavage line so I'm self conscious about bending over. I feel that they appear well enough in clothes but naked they are misshapen & a little droopy. I'm reluctant to have the final nipple surgery knowing I'm not really happy with how they look. I am 58 years old and no bathing beauty to begin with so I feel kind of like I should just accept that the reconstruction outcome is not ideal and move on. Sadly, with regard to intimacy with my husband, my original Bob's were the only part of my body I wasn't self conscious over, now I'm just shy altogether.

  11. I was looking for revision testimonials on Google when I came across this site. Needless to say I was humbled by Ann ' story. I had BMX a year ago with Tissue Expanders placed immediately, then had Radiation, Lymphedema, and finally the much anticipated reconstruction (TUG Flap in my case).......and POP goes my bubble!
    My first reaction was...."These are so not worth all the pain I had to go through"......
    Now waiting on revision (3mths post op), hopefully the debulking, lifting, shaping and all the other promised abracad abras will restore some of my lost self confidence.
    Don't get me wrong I'm glad to have survived BC but I just felt that my outward beauty had been somehow compromised.
    At 40 yo with 2 young kids and also a young husband, I think it will be selfish of me not to strive for the closest thing to optimal restoration available..... If I can call it that.
    I hope I won't spend this summer in layers (jackets, blazers, scarves, etc.) again 'cos it does get HOT in
    But seriously, I think we can all agree that BC takes away a lot from both the patients and their families. .......that sometimes humor is all we have to get us through the very dark days.
    Thanks Ann.

  12. Interesting. I have been trying to figure out if I want to re-try, after my expander was removed due to infection. I am thinking more and more not to re-try. The first failure is the best warning to heed, in my opinion. The doctors push reconstruction without telling you how bad it gets. Bless their helpful hearts, but it is just not worth it.

  13. I am 2 years post left mastectomy with TRAM reconstruction and finished chemo 4/13. I had a second surgery 8/13 to finish "sculpting" my reconstruction. Now 1 year later I just had a revision of my reconstruction, due to band of bra laying in scar and rubbing (I tried every brand and type of bra out there). Now I have to wait until swelling goes down and everything settles to see how this one turns out. I wish I had of know this could be a long process. I got a second opinion before last surgery so I feel good with my surgeon. I am just laying here aching and wondering how many times can you go through a revision of a revision of a reconstruction? lol Sorry you had to go through this but nice to know I am not totally abnormal!

  14. Ah the phantom itch. I commiserate. I'm just looking into my reconstruction - thanks for all of this information.

  15. Great to find this site and hear others' stories. I had reconstruction with a silicone implant three years ago but after 6 weeks got an infection and then capsular contracture. It's been uncomfortable and looks bad but I have been living with it because I don't like surgery! Now, at 52, I'm reconsidering because I want something better. The risks of another contracture though, and going through a 3 hour surgery to remove scar tissue and drain, is daunting. Ugh!

  16. I am glad I found this site. Thank you ladies for all your honestly. Unless you are going through or have gone through it, it is hard to understand. Yes, I also heard from people the bright side of BC is perky boobs! There is no bright side, you have to go through it hopefully with knowledgeable doctors that you trust and still you never know how it will end up, as every case is different. I am coming up on a year for my revision after my initial mastectomy/reconstruction in 2013. Still having issues. Trying not to let myself get overwhelmed, you ladies are a godsend.

  17. Thank you ladies! So glad I found this site. I have been feeling so overwhelmed lately. Coming up on a year for my revision, and still having issues. Discussing with friends and family is tough, they try their best to understand, but if you haven't been through it, you really can't know. And the thought of more surgery...omg... deep breath. The phantom itch, so glad to hear someone talk about it! I had no idea. It is maddening trying to scratch with no sensation.

  18. Seems to me it's much like childbirth. An over reaction to the old horror stories results in emphasis on the wonderful experiences of a few, leaving the rest to wonder how they missed out.
    Three years on from a lat dorsi with implants I am not happy with my now matronly, oddly shaped double D cups instead of my original C. Despite telling my surgeon that I would prefer to go smaller than bigger!
    She had assured me previously that fat transfers and scar tuck revisions could tweak any small problems, now she tells me they won't. Thank goodness I was disillusioned enough to refuse the nipple reconstruction. They would be pointing in the wrong direction now.
    Like childbirth again, our gratitude for life is expected to make up for physical damage and pain. We are grateful. But if the damage can be fixed, why not?
    Pluses: My love handles are gone forever. And I never have to manage the cold nipple problem. :)

  19. I'm so glad to have found this site and thank-you for sharing. I feel so bad that I am not satisfied with my reconstruction. I feel guilty that I'm just not happy to be alive even if my breasts have reminded me daily of my cancer. One is larger and flatter than the other. I must constantly adjust my top or dress because whatever I'm wearing tends to shift to the bigger boob. It is so obvious, I am miserable. I waited 2 years because I wanted to make sure revision was the right thing to do and I was sooo tired of surgeries, but I can't stand it. I have no nipples because my breast look horrible and it would be a joke to add nipples. Thank-you all for sharing and helping me feel like I am not alone with these feelings.


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