Saturday, November 15, 2014

Ten Things to Consider When Contemplating Breast Reconstruction

   Nancy  reconstruction
It’s been three years since I finished up thevery 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?


044 (2)
Related posts:

NANCY

16 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.
    REPLY
    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.
      REPLY
  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.
    REPLY
    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.
      REPLY
  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.
    REPLY
    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.
      REPLY
  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.
    REPLY
    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.
      REPLY
  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.
    REPLY
  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.
    REPLY
    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!
      REPLY
      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.
        REPLY
    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.
      REPLY
  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. :)
    REPLY
  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.
    REPLY
  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!).
Posted by at
Labels:

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)