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Ten Things to Consider When Contemplating Breast Reconstruction

It’s been three years since I finished up the very long and winding road of breast reconstruction, so I thought it might be a good time for me to share a few things that I feel are worth thinking about before choosing breast reconstruction. Most of them apply if you’re going the prophylactic route too. Four years have passed since my diagnosis and three since completing my recon project, so I have had a little time now to think about the choices I made and if truth be told, I might very well choose differently if I were facing the same scenario today.

I would think a little harder and a little longer about not doing reconstruction at all. I didn’t say I would still not choose it, but I am saying I would definitely put a lot more consideration into thinking about that option. At the time of my diagnosis, it seemed as if it was almost assumed by everyone around me that I’d be having reconstruction. I’m not even sure if opting out was discussed, or if it was, I don’t remember that.

Opting out should always be discussed.

I would most definitely do a better job of researching ALL of my reconstruction options. Don’t get me wrong, I take responsibility here and it’s not like I didn’t do any research. I did. I clearly remember doing it because I also remember feeling sick to my stomach while reading through all the different procedures and trying to process it all. When you are in the thick of it, as I was and you might be now, it can be very over-whelming to say the least.

You need some time to figure this stuff out. Take some.

And yes, my plastic surgeon did bring up various procedures at least once because I remember me saying something stupid like, “Yeah, I’ve got plenty of extra belly fat for whatever you might need to do.”

My surgeon’s response was, “Well, actually you don’t have as much there to work with as you might think you do.”

And that was that.

I didn’t push for much more information from him about procedures other than the implants one. What was I thinking?

I regret not doing that.

 1.  So my number one tip is do your research on all the reconstruction options available to you, or have someone you trust do it for you. Remember, you are amputating your breasts and figuring out what to do (if anything) with that space on your chest after they are gone. These are huge decisions and you are making them at a time when you are perhaps vulnerable, uncertain and possibly feeling pressured to decide things quickly.

 2.  Discuss with your plastic surgeon which procedures will or will not work for your situation and do not settle only for the one(s) he/she has experience doing. If you want to consider a different procedure, you might have to go elsewhere to at least talk about other options you’re interested in with a surgeon who does have the skills that an alternate procedure would require.

 3.  Never choose reconstruction to please your spouse, partner or anyone else. This is your body and your life. This is about you.

 4.  Realize that the reconstruction process can take months, involves pain and discomfort, has risk for complications, requires time off from work and will likely also require at least some additional help at home. It’s not quick and easy. And it sure as heck is no boob job.

 5.  Do not fall into the trap of I might as well go bigger now that I have a chance to do so. I did this and no, I’m still not all that big, but I did go bigger. If I were to do things over, I would not do this. I clearly remember my plastic surgeon saying to me, “No one has ever told me she was sorry she went bigger.”

Well guess what?

I am.

And again, I take responsibility for the decision I made here too. Bottom line, don’t assume bigger is better for you.

 6.  Find out what your time parameters are. Maybe you can do reconstruction later. Maybe you can’t. Maybe you can start things now and finish later. Maybe you can’t. But find out. Know what your options are timetable-wise, too, and also what they are likely to be down the road if you want to wait. You might need to check on insurance coverage if you wait as well.

 7.  Ask to see photos of reconstruction work your plastic surgeon has done for other patients. Doing this is a very weird experience, but well worth it.

 8.  Discuss all your questions with your plastic surgeon, even the ones you are embarrassed to ask.

 9.  Be sure to discuss nipples and areolas too. Don’t assume your plastic surgeon can do it all. Mine did not. Going to yet another plastic surgeon for areola stuff was yet more to do and added additional stress. Knowing this upfront is important and reduces stress later on. Some women opt out of this part. Again, it’s all about personal choice.

10.  Go into things realizing breast reconstruction is just that, reconstruction. Have realistic expectations about what most likely will and will not be attained.

To sum things up, take some time and learn about the entire project, your entire project, from start to finish before you begin. This will help to eliminate surprises and disappointments, at least some of them. And heaven knows, after a cancer diagnosis (or trying to avoid one if you are doing a prophylactic surgery), mastectomy and everything else on your plate, you can use fewer of those.

I hope these tips are helpful. Good luck!

Have you had breast reconstruction?

Did you opt out of reconstruction, and if so why?

What would you add to this list?

 

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35 thoughts on “Ten Things to Consider When Contemplating Breast Reconstruction

  1. This is such a helpful post, as it is just so overwhelming to go through the reconstruction process. I thought, as you did, that I did all the research as well, but some things just weren’t exactly as I anticipated. I never realized how uncomfortable the expansion process would continue to be, even now 3 1/2 years after the procedure. The tugging, tightness and pulling of my implants is something that no one prepared me for, and I’m not sure if I would have gone through with it if I knew that it would be this uncomfortable at various times (ie. sleeping, sitting on a soft, cushioned couch, or when reading in bed). It’s a difficult decision and your 10 points above will be very helpful for anyone going through this difficult process.

    1. Claudia, I’m glad you think it’s a helpful list. I went into things ‘knowing’ about the procedures – sort of. But I was not well informed about what living with implants would actually be like. No one really tells you about that part, or at least I sure didn’t hear about it. And I do wish I had considered other recon procedures more fully. But we all know what they say about hindsight. Thanks for reading and sharing.

  2. I did not have reconstruction but I recently spoke to a woman who had reconstruction and regretted it. She had the type where they take muscle and fat from her back (sorry, I don’t know the name) and she ended up having problems with her rib cage expanding due to lack of muscle tone and all sorts of ensuing problems that I could never imagine. Therefore, I would add to your list to be sure to talk to your surgeons about what could happen as a result of the removal of fatty tissue/muscle from your back or tummy or wherever – that is not the target surgery area but it still could have significant side effects. Right now, I am not sure what I would do if I ended up in that boat.

    1. Caroline, It is important to talk about the potential risk for complications that might arise following any type of reconstruction. Thanks for emphasizing that. You didn’t mention if you’re still satisfied with opting out or if you have regrets. But maybe we all have at least moments of regret no matter what we choose. Thanks for reading and commenting.

  3. Nancy thank you so much for continuing with this discussion. I was very lucky in my state of New York there were quite a few great support groups. In my county their was Breast Cancer Options located in Kingston, New York and it is run by breast cancer survivors. They had an amazing young survivors group that was invaluable to me. I also went to the Reuner House which was part of the Benedictine Health Foundation and they had a women’s cancer group as well. The number of women with breast cancer of all ages was surprising to me. But personal face to face support was extremely helpful and some of the woman did show and tell so I could see the many options; lumpectomy scars, radiation tattoos, non reconstructed mastectomies, diep and tram flap single and double mastectomies, beautiful flat chests, prosthetics you name it, they were willing to share. I also had the chance to speak with a social worker that was also a breast cancer survivor. All of these sharings were so personal and individual and unique, I am in awe how lucky and honored I was to have them share such private intimate experiences. They made it real and the options were there. The women also encouraged me to get a second and third opinion at each stage of the process. I do not have regrets. There was also another group called from lumps to laughter that I found on line. We had phone meetings and they sent me great invaluable books and resources. Now this blog has become a lifeline too and I thank you so much for your honesty and willingness to share all sides of the experiences. I would put support groups and second opinions on your list too.

    1. Diana, Gosh, it sounds like you did have some amazing support. It doesn’t really surprise me that those women were so willing to share by show and tell. When I met with my physical therapist to discuss lymphedema, she showed me everything. I think it would be really helpful for women to meet with a group or be assigned to another woman who has gone through this stuff. That would help in the decision making. I’m glad you have no regrets. I wonder how many others can say that. Thanks for reading and thanks for the addition to the list. Good idea. And thank you for the kind words about my blog too.

  4. Great list! I always recommend that people ask for photos and see what different types of reconstruction can look like. My hospital has also used me for years as someone patients can call/email to talk to about my reconstruction (this may also be an option for people contemplating reconstruction – ask if they can speak with someone who did the same surgery by that surgeon). I have spoken with many patients when they were making the decision. Some went ahead with it, some did not. I had complications, so I am surprised that they use me sometimes, but I am also comfortable talking through the pros and cons.

    1. Mandi, I agree, it’s important to look at photos. How wonderful that you are making yourself available as a resource for women to call or email. I think that should be a program in place all over and it would be fairly simple to implement. So yes, ask if there’s someone you can speak with, that’s a great suggestion. Thank you.

  5. Just my two cents here as a nurse, also make sure to discuss with your oncologist, radiation oncologist, and surgeon whether any of the other treatments you will be receiving, and the order in which you have them done, and how long you wait in between them, will put you more or less at risk for more complications either now or later on. If you’re having chemotherapy ask them about infection, bleeding, and getting enough oxygen to the healing tissues. Even if they SAY you’re ready (blood counts have recovered enough for surgery), you might not be recovered enough. Labs say one thing, everyone’s body is different. I’ve seen a lot of infections and complications due to the fact that the person’s blood counts were “adequate” for doing surgery, their body (and blood counts) were not really ready for the insult and to handle the full recovery process. Don’t be rushed into doing things. Each surgery takes a lot out of you, and with reconstruction you are likely looking at multiple surgeries. It might be better to go longer with an incomplete process than rush through it and end up with an infection- hospitalizations, IV antibiotics, feeling lousy, etc.

  6. Nancy,

    Thank you for this post.

    It is not your memory that might be lacking. The fact is that opting out is nearly never mentioned and if it is mentioned, it is often said with contempt. It is to be expected that you would walk away thinking reconstruction is presumed. What is surprising perhaps even shocking is that in spite of all the presumptions, pressure, shaming and bullying, that over 50% (think that figure is closer to 60%) turn it down at least in the beginning and remain a large percentage even in the long run. A fact that many professionals find inexplicable. In spite of the presumption that women are better off emotionally if they reconstruct, a recent study reached the conclusion that after a few years the level of satisfaction with their decision was about the same for those who chose recon as for those who decided against it.

    Thank you for saying Opting Out should always be discussed. All of your points are excellent.

    Why did I decide against reconstruction? My list of reasons is quite long – I will only mention a few. I have never felt that I was defined by breasts and so would not be defined by their lack. I hate doctors, hospitals and procedures and did not want any more unnecessary surgeries, additional risks, compromised strength and prolonged recoveries. I had no interest in foreign bodies or sacrificing other body parts to make unfeeling non-sexual look a likes that would never be the real thing. I guess it boils down to I did not want to give any more of my life to cancer and the aftermath than was absolutely necessary. Besides I have other medical considerations and did not want to tempt fate. I chose the option that would let me step back into my life as soon as possible and minimize any ongoing treatment and surveillance. That last had a lot to do with choosing mastectomy with contralateral prophylactic with no recon, over choosing lumpectomy with radiation. Again a long list leading to that aspect of the decision.

    I made the very best decisions I could with the information I had available at the time. I am now over 4 yrs out and even with 20/20 hindsight I would make the same decisions again. Personally, I only ask that our decisions be of our own making, be respected and not be thrust upon us often when we are at our most vulnerable.

    Alene Nitzky, Excellent advice.

    1. Thanks for your sharing FlatnFabulous. I also chose not to have reconstruction and I am still happy with my choice nearly 6 years later. It was the best option for me for many reasons. A few of those reasons are 1) nothing was going to replace my God-given breasts in look and feel 2) I didn’t want more surgeries, procedures, and at age 42 the stronger possibility of more procedures needed years later 3) I am a runner and I wanted the best chance of running comfortably and being able to continue to run. I wasn’t interested in implants and with using my own body tissue, I knew the possibility of chronic pain was more possible. 4)There is much more that defines me beyond my breasts and the rest of this physical body I reside in.

      I wear prosthetics some of the time, but go flat at home and when I run. There is some freedom in having the options I do. My wish is for every woman to have the information and time she needs to make this very personal decision, and to believe most in herself and what is best for her. I too sometimes feel “different” for not having reconstruction and understand the pressure and presumptions you speak of. Breasts are important and I miss mine, but I am grateful I can live a full and happy life without them. I am grateful I define myself by far more than body parts. That is why it is important for those of us, and there are many as you said, who have chosen to not have reconstruction to share our stories. Thank you and thanks Nancy!

      1. Lisa, Thanks for sharing so honestly. My wish is the same as yours – for every woman to have the information she needs available to her at the time she needs it and also to be allowed some time to think things through and then make the decision that feels best for her.

    2. FlatNFabulous, Thank you for sharing so candidly about your decision and for sharing some of your reasons for opting out. We all make the best decisions based on information available to us at the time. The trouble is, sometimes the information isn’t as complete as it should be and we don’t realize that until later. Thanks again for sharing.

  7. Nancy, thank you for another interesting post about reconstruction. I wished I had found your blog before I actually had a BMX and direct to implant recon. As you said, the process is overwhelming in the moment and you don’t really have to the time or the concentration to weight all the options properly. I just was sure I did not want the latissimus because I am a swimmer and I did not have enough belly fat for the diep. The surgery was at the end of May and the prophylactic side failed.. The implant was remove a month ago and I still have a wound that won’t close. Ironically, the cancer side turned out perfect so now, I am the proud owner of a small but not uncomfortable foob and a flat side. I never imagined saying that but I think I will stay that way because any more recon attempts could fail as well and I am not willing to go again through months of inactivity. I will get a beautiful tattoo to cover the scar and go on with my life. Actually, the weight gain due to not being able to move for months bothers me more than my flat side now. I am 37, single and never thought having only one breast would be ok, but it actually is. I want to feel healthy again and this is now way more important than having breasts. 🙂

    1. Theda, I’m glad you are ok with things as they now are. You’re right of course that feeling healthy trumps all. Thanks so much for reading and sharing about your experience. I wish you’d found my blog sooner, too, but I’m glad you’re here now.

  8. The point about not going bigger is a conversation I have with my plastic surgeon — who has become damn near family during the last 4 years — every time I see him! Even though the majority of his work is reconstruction, he still has that PS mentality that every woman wants bigger boobs! I’ve had to look him in the eye and say “Repeat after me: I do not want bigger boobs” multiple times, and each time I’ve undergone a revision to my DIEP reconstruction (just finished the 3rd one), I remind him that if I wake up bigger, I’m gonna hurt him! More power to women who want bigger boobs after reconstruction. Yours is an important reminder, though, that not everyone does.

    1. Pinkunderbelly, Plastic surgeons do seem to have this notion that all women want to go bigger, but I suppose they do get that request often. I really wish I had not gone bigger, so I totally understand where you’re coming from. I love how you “threaten” your PS. I can just imagine that conversation! Thank you for reading and adding to the “size” component part of the discussion.

  9. P.S. In addition to your 10 very salient points, I’d also suggest that women contemplating reconstruction inquire as to whether they have the option to have it done in a surgical center rather than a hospital. I’ve had both, and for me the surgical center was way better because the nurses are more specialized, it’s a smaller and quieter setting in which to recover, and there’s less exposure to the wide range of pathogens than in a conventional hospital (which tend to be full of sick people!).

  10. Wow, sounds like my experience was very different from others’. I was told not to do recon at the time of lumpectomy, wait until after radiation because radiation would damage the work. Then it was never brought up again. Granted, after my surgery I was moving toward not reconstructing–which I am happy about. So I do not know what would’ve happened had I brought it up, because I never mentioned that I was thinking about it or deciding against to my onco team. But the point is, I had no pressure, rather, the vibe I felt was that I should just be happy to be alive, recon and body image unimportant.
    So while I can see some BC patients’ points about the pressure to conform to beauty standards, and everything else mentioned here, I kind of take the opposite stance here. There are still pockets in rural areas where maybe women are not informed of their options, and I think I live in one such area. Of course as a self-professed Curmudgeon, I’m sure I would’ve fussed if it had been presented to me as something I “must” do. Anyway, just wanted to bring up a different story–not all of us are pressured into a fast recon.

    1. CC, Thank you for presenting your experience. It’s good everyone is not pressured, but of course, radiation can alter this pressure as well as the time frame for some. I’m glad you are satisfied with your decisions. Thanks again for sharing.

  11. Nancy, How I wish I had discovered your site in 2013 when I was diagnosed with stage 2B invasive Lobular Carcinoma. I am 66 years old, 65 at diagnosis. At diagnosis I knew I wanted a double mastectomy and pretty sure of reconstruction. But from there my life became a maze of decision making, doctor appts and surgeries and 8 rounds of chemo. I did not know anyone who had had reconstruction so I went with my breast surgeons recommendation of tissue expanders for seven months and then exchanged for silicone implants. My tissue expanders were 650 ml and were extremely painful, but no one for-warned me of all of the issues that could occur. So when I had them exchanged for implants (650 high profile Mentor Silicone) I thought my problems were behind me. Wow was I mistaken.

    Six days after the surgery I had pulmonary embolisms in my lungs and consequently was put on Coumadin, which I am still on until next spring. My left side (where the cancer was) is still very painful. My implant on that side often feels squishy and the skin on the bottom has fallen and droops because that is where they scraped the skin so thin from the tumor area. (2.1cm tumor) and the nipple is off center which he says can be corrected. I have constant tightness under my arm, pain,scar tissue (I also had eight lymph nodes removed) and muscle pulling under the arm and around my back. I have been to physical therapy three different times and it does help and have had myofascial release over a three month period. But the tightness remains. The right side seems to be OK, just a little tightness. I often feel as though there is a wire wrapped around my chest. My plastic surgeon wants to do a revision on the left side but he often poo-poos my pain complaints and says it will never feel the same as the real ones. No Joke? Really!!!! He was highly recommended by my breast surgeon and well respected in our community and has been a plastic surgeon for 20 plus years. But he sloughed off my embolisms as pneumonia and said I had been mis- diagnosed. I don’t think so!

    I really wish someone had sat me down and said let me tell you what you will really be dealing with. I have yet to meet anyone who has had reconstruction who says it was breeze. My initial expectations were nothing like the real facts have turned out to be. Sometimes I think about getting the implants removed permanently and be done with it but I am afraid that will not correct the tightness problem or the pain. On a good note my clothes before and after, do fit very well .

    To that end I have made an appointment with another plastic surgeon for a second opinion. Among other things I want to know if the implants are supposed to be the same size as the tissue expanders were…650ml.

    Your blog has been one of the few places I have found where the truth really comes out and makes me feel like I am not making this all up. Thank you for being here.

    Mary Ellen

    1. Mary Ellen, Nothing about any of this stuff is easy, at least not for most of us. Reconstruction is sometimes entered into without full knowledge regarding what’s it’s all about. And often decisions are made in haste. I’m glad you are seeing another PS to get a second opinion. Good luck with everything and thank you for the kind words about my blog. Thank you for sharing.

  12. I am so glad that I discovered this site as I, too, am pondering how to proceed with reconstruction. After my first breast cancer episode 33 years ago, I had an implant done via expander. Remarkably it has remained in tact and does not need to be replaced. I have now had a second breast cancer diagnosis but am now in my 60s. I currently wear a prosthetic device on one side and, of course, the implant on the other. Now what do I do? The plastic surgeon has offered several options for the second cancer site leaving the other implant as is. None of the options would seem to bring any balance to the situation, as I feel my body is out of sync.
    I am seriously considering asking about having the implant removed ( not everyone would understand) and have no further reconstruction. I somehow feel I might be more comfortable. Thoughts anyone????

  13. Nancy, if you are reading this, then my comments are no longer being put in spam folders, which was the problem with me leaving comments.

    Anyway, this is an excellent post, with great tips. I wound up doing almost all of these. I did see the photos from clients and did research. I got a lot of answers from my fantastic plastic surgeon. I actually went smaller (not that I was really big to begin with). Anyway, opting out was never discussed. For me, I was bent on having breasts; it was the right decision for me.

    One thing I would add is the nipple thing (and this ties really well in with your nipple post). I wish I would’ve told the plastic surgeon that I wanted my fake nipples to look as much like my real nipples as possible. They look nothing alike, and it’s hard for me. But all, in all, I’ve accepted this. Great post, Nancy!

    1. Beth, Well I am reading this, so yay! Hate to see anyone’s comments end up in spam. I know you’ve been pretty satisfied with the reconstruction route you took and I’m glad about that. I agree that there should be a whole lot more nipple discussion. They are such an important component of reconstruction for some and deserve more attention during consultations. Thank you for reading and commenting.

  14. Hi Nancy,

    Loved your posts. I recently lost my dad to cancer and started blogging my experiences as a care giver. YOur posts are totally enriching and informative experience.

    1. Ramya, I am very sorry about your dad. I think you will find blogging to be very healing and helpful throughout the grieving process. Thank you for the kind words about my posts. I’ll check out your blog soon. Again, I’m sorry.

  15. I love this post as it poses questions very few seem to address! I’m a 25 year survivor (I was diagnosed at 27 years of age) and underwent a unilateral mastectomy. My first round of reconstruction was about 2 years after my mastectomy–it actually failed after being in place for a year (implant was working it’s way out of the original incision) and needed to be removed and I honestly didn’t think about it again for another 17 years. I was content. Then it suddenly clicked in my head to research the procedure again (mainly because I wanted to open up the clothing options available to me), and told my doctor to not be shy—go bigger! Now clothing is harder than ever to find as my breasts are too big for my frame and it’s almost impossible to find a bra to fit the reconstructed side (it’s harder/rounder as opposed to the natural side). If I do any type of upper body exercises I find myself in incredible pain due to the muscle tightening up. It sounds strange and my husband isn’t keen on the idea, but I actually dream of having both implants removed and to get as sporty as I’d like once again (lifting weight, kayaking, etc.) I plan to research the reversal….

    1. Lynn, It doesn’t sound strange at all to me that you are dreaming of having both implants removed. I understand completely. Good luck researching all your options. Thank you for reading and commenting. I wish you all the best.

  16. After reading the comments on this site, I consider myself fortunate. I was diagnosed with invasive ductal cancer with lobular features in my right breast. In spite of having a mammogram every year, my surgeon said my cancer appeared to have been around for about five years. That’s another issue… I had a lumpectomy which did not produce a clean margin so I opted for a mastectomy of my right breast with an immediate implant and reconstruction. My plastic surgeon was fantastic. She warned me of everything that might happen and to not expect the final result for several months. My implant was very high at first, but settled down after three months. After I completed chemo, I had nipple reconstruction surgery and a lift on my remaining breast. My foob (faux boob) and fipple (yeah, you can figure it out) look great and I have had no problems. My natural breast is a bit larger but the girla look fine in clothes. My PS told me that I would not get identical twins, but she would try for fraternal. I am pleased with my results.

    1. Deborah, I’m glad you are pleased with your results and your plastic surgeon sounds wonderful. Thank you for sharing about your experience.

  17. Hello Nancy,

    Thank you for helping bring awareness to breast reconstruction and sharing your personal experience you on the process.

    My name is Dr. Rimma Finkel. I’m double board certified in Plastic Surgery, specializing primarily in breast reconstruction surgeries. I’ve found that many breast cancer patients have been searching for more information about the reconstruction process. I would like to offer helpful information and resources to these survivors.

    Would you have just a minute to review an infographic we’ve created. We’d love some feedback on where we could have been more helpful and informative. Thank you so much for your help!

    Breast Reconstrucion Infographic

  18. Hi Nancy,
    Thank you for sharing your personal experience to us. This is very helpful especially to women who might want to consider breast reconstruction. I think people who wants to under go breast reconstruction should do a lot of research about this surgery. There might be effects on the body after the surgery. I agree that you really need to ask your surgeon and not to be shy asking questions.

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