the long and winding road of breast reconstruction

Breast Reconstruction, Another Kind of Long and Winding Road

The topic of this post is nipple reconstruction. There, I said it. Addressing this topic feels even more personal than just speaking about breasts in general and sometimes I wonder why this is. Why is it so hard to blog about, or even to say the word “nipples” out loud? But, here we go…

A couple weeks ago I had a post-surgery visit with my plastic surgeon for the unveiling of the finishing touches (yes, nipples) on my reconstruction project. It got me to thinking about my first meeting with my plastic surgeon about a year ago. Dear hubby and I were both pretty nervous that day.

I never viewed myself as the kind of person needing or wanting plastic surgery. I would age gracefully as they say, whatever that means. Aging isn’t really graceful at all, in fact, it’s quite the opposite really. The older you get, the less graceful you actually become in some ways. At least that seems to be the case with me.

Cancer changed my aging gracefully plans.

Suddenly I found myself meeting face-to-face with a plastic surgeon. Actually, it felt less like face-to-face and more like a breasts-to-face type of meeting; is that sharing too much?

Our first meeting took place as a consultation in case my BRCA test came back positive. It did. Positive results called for a bilateral along with the reconstruction option, if I so chose. I remember sitting there feeling totally out of place, slightly humiliated and more than a little uncomfortable as yet another person peered, prodded, measured, calculated, advised and yes, even took photos.

Reconstruction sounded more like something to be done on a building or highway, not my breasts.

That first meeting was awkward to put it mildly. It wasn’t the doctor’s fault. It was simply due to my state of mind at that point in time, which had been so recently inundated with a cancer diagnosis, undetermined treatment courses, unknown test outcomes and too many statistics. And of course, we were talking about breasts. My breasts. I don’t know about you, but not that many people have seen mine. Even back in my girls locker room days, most of us hid behind our gym towels as much as possible.

Many women choose not to do reconstruction and sometimes I think they are the wisest among us. Reconstruction is a choice and it is not right for every woman for a variety of reasons. Here is a great site that speaks to that decision route. It’s appropriately called BreastFree.org. A woman should never feel rushed or pressured into choosing reconstruction.

My relationship with my plastic surgeon has evolved over the last year. Now we are pretty comfortable with each other, at least as comfortable as possible considering the personal nature of our discussions. I remember he told me back in the beginning that we would get to know each other really well because reconstruction was going to be a long road. Boy was he right. At the time I had no idea how long of a road it really was going to be. It was probably better that way.

Again, if you are considering reconstruction, it will  be a lengthy road and there may be setbacks and detours along the way.

Dear hubby asked me if I wanted him to accompany me on this latest appointment. Even he sensed the highly personal nature of this latest juncture.

“Of course you can come,” I said. “You’ve been along every step of the way, why stop now?” I did wonder a bit though about what his true thoughts might be…

I found my mind at this last visit was definitely in a different place. This time, my thoughts were more of the absurd kind. I couldn’t quite help feeling a little bit like the Bionic Woman, Frankenstein and Wonder Woman all rolled into one. I felt like some kind of partially recreated new person. I’ve had various parts removed, rebuilt, adjusted, maneuvered, tweaked and fine-tuned. I was waiting for the unveiling. All three of us were.

We all sat there with baited breath while my doctor gently removed the bandages to check on this latest phase of “the project.” I think he was almost as anxious as I was. He has become quite invested in his project. He wants a good outcome, too.

I could tell by his expression he was pleased with the results. All three of us uttered a collective sigh of relief. “Sometimes this part of the project goes well,” he said, “and sometimes it doesn’t.”

After more inspecting and analyzing, it was determined more healing time was required.

I needed yet another visit. There would be yet another unveiling.

The long winding road continues. But I’m getting closer to the end.

For more information on breast reconstruction, BreastReconstruction.org  is a pretty good starting place.

For a highly informative and more descriptive take on the actual process of reconstruction, I recommend checking out this post by The Accidental Amazon called Reconstruction: An Alternate View. It’s a superb piece.

Have you had or would you ever consider breast reconstruction or ANY type of plastic surgery?

How do you handle those embarrassing conversations with your doctor?

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Breast Reconstruction is a long and winding road 

46 thoughts on “Breast Reconstruction, Another Kind of Long and Winding Road

  1. Great posting! I admire your candor about reconstruction, and I have read the terrific blogs you point out.

    I agree that there’s nothing wrong with making the choice not to get breasts. It should be a choice. In my case, I had a DIEP flap procedure because I didn’t want to come out of surgery without breasts and I was a good candidate for the surgery.

    Yes, I totally get the Frankenstein analogy in particular. As part of the reconstruction, my belly button was removed and sewed back in the correct place. It still is hard for me to fathom this.

    Thank you once again for sharing an excellent, honest portrayal of the reconstruction process. Whatever the procedure, reconstruction is no easy matter.

    1. Beth, Thanks for sharing a bit about your experience with this process. It is all kind of unfathomable isn’t it? I’m trying to figure out how they remove and sew back in a belly button?? I’m glad you are mostly satisfied with your results and I totally agree reconstruction is a choice and not for everyone. Just wondering, do things ever feel sort of normal again? Or at least more comfortable?

  2. Nancy, this is a great, honest post. Yes, reconstruction is a long process, and for some women it is the right choice. Prior to breast cancer I would never have considered plastic surgery and the decision to go ahead with reconstruction was agonising. I knew it would be hard, long, involve several surgeries and would be potentially full of complications (it was and it still is!). I lived with one breast for two years and then went ahead with DIEP.
    I chose my plastic surgeon for his dignity and respect for patients, he is the one that makes the ‘difficult’ conversations easy to have by his gentle, delicate manner. I like him enormously and think that’s really important when considering recon.
    I know exactly what you mean about being measured and prodded, I have found the measuring tape and the black pen to be somewhat off putting! And like you wish there was a better word to describe such a delicate and intricate process – reconstruction sounds far too ‘heavy’ for it.
    Hope your healing continues to go well, and your finishing touches are soon finished. Best, Sarah

    1. Sarah, You are right, your doctor choice is so important. Still, even with a “good” choice that relationship must develop due to the personal nature of this stuff, at least for me it had to. And there has certainly been time for that to happen in this long process! Thanks for sharing your thoughts and for inspiring me to just go ahead with this post.

  3. I’m so glad to hear I’m not the only one who feels funny talking about the nipple part of reconstruction — and I don’t usually clam up about any part of my “cancer journey!” I love the way you compare recon to work done on a building or highway; my thoughts exactly! I’ve recently returned to the gym and have had several people ask where I’ve been. Feels weird to say, getting new boobs. I had DIEP recon 11 wks ago, and still need some fine-tuning. It was a huge surgery to go through, and to come out of it without everything being “done” is hard, but I’m happy to be healthy. Like Beth says, having my belly button removed & reattached is weird, and I don’t like the shape of the new one, nor am I happy with the current shape of my breasts, but considering how bad my chest was was marred by the post-mastectomy infection, they did an amazing job. Cheers to you for writing about an uncomfortable subject. Maybe the more we get it out there, the less uncomfortable it will be.

    1. Pinkunderbelly, You are most definitely not the only one feeling funny talking about this aspect of reconstruction. I can’t quite figure out why this part is so awkward to discuss. It needs to come out of the closet I think, don’t you agree? I’m glad you are feeling alright about your results. I’m hoping to get more used to mine with time. Thanks for sharing what you’ve gone through and thanks, too, for your supportive comments.

  4. Nancy, thank you for writing this. During my recent nipple reconstruction, I was actually having a conversation with my surgeon about blogging on this topic. He found it fascinating and one of the nurses asked if I found it helpful. Umm…Yes!! Being able to share something so upsetting, confusing, insert any adjective here, and have someone read it and relate to it is comforting in a way. We are not alone. We learn from each other’s blogs and I love knowing I’ve found other women, like you, that understand, can honestly answer questions and just be there. I’m so happy you shared your experience here. You’ve made me feel my shyness in that situation is not strange behavior. I’ll try to remember that in a couple of weeks when I have the stitches removed!

    1. Stacey, Oh, I know what you mean. I told my plastic surgeon I was writing about this stuff, too and he just smiled and said, “Just don’t say anything bad about me!” Like you, I find writing and sharing about all of this stuff to be extremely helpful to me and I also hope it possibly helps others to understand whether they are going through it themselves or not. Thanks for sharing about this personal topic, Stacey, and for inspiring me to just go ahead and “put it out there.”

    1. Murray, Thank you for your comments and support. It’s great you are trying to bring awareness and more perspective on reconstruction at TAH. Thank you. I will check out your questions.

  5. What a fantastically honest and wonderful post Nancy and one I am very interested to read. I had a (euphemistically called)
    lumpectomy which left my breast very disfigured and with no nipple remaining. I would certainly have considered reconstruction but I was told it wasn’t possible after brachytherapy. I have no idea why this should be and to be honest I have never followed it up. While I sometimes get down and disheartened when faced with my scarred and disfigured breast, I have learned to accept it and wear my partial prosthesis when getting dressed up. It is such a personal decision so it is great to have you give resources for both those opting for reconstruction and those who choose not to. I am sure this post and readers’ comments will be very helpful to those who are in the midst of making that decision.

    1. Marie, Thank you so much for sharing your thoughts on this personal topic. This was another one of those posts I hesitated on. I know what you mean, that term lumpectomy can be quite deceiving as sometimes it is way more than a small lump being removed. I think there should be a better word. I don’t really know what brachytherapy is?? I’m glad you have accepted your decisions and live confidently with your slightly altered body image. You inspire others daily, Marie.

  6. Years ago, our school nurse had bilateral breast cancer surgery. She chose not to have reconstruction, and was happy with her decision. She could buy regular bras, she said. I don’t know if this is pertinent to your discussion, but it’s my only reference point at this time.

    1. Sharon, Thanks for adding to the discussion, Sharon. Your point certainly speaks to the decision not to do reconstruction. I think women who go that route far outnumber those who do under go reconstruction, but I can’t remember the actual statistics off the top of my head. And one of my aunts made this comment once, “You know some bras practically stand on their own now anyway.” That really cracked me up! (she is also a bc survivor).

  7. Nancy, thank you so much for this important post in which you share with your readers intimate details as if we were close sisters. I love it.

    I opted not to reconstruct. I agree it is a very personal decision and no one, and I repeat no one, should pressure a breast cancer survivor to opt–or not–for reconstruction, a decision she may later regret and resent.

    In my case I had radiation on one side, but not on the other. I could have had an implant on the non-radiated side but would need a TRAM-flap on the other side. Assymetry was not what I had in mind for my future chest appearance. So I wear my prostheses when I am going out in public and it matters how I look, and leave them off if I am lounging at home or going to the gym.

    I so appreciate your candor regarding this delicate subject and the great resources you provide. I wish you well on the rest of your unveilings.

    XOXOXO,
    Jan

    1. Jan, Thank you for your kind comments and for making the important point once again that a woman should never feel pressured to choose reconstruction, or also to not choose it for that matter. It’s an extremely personal choice. I’m glad you were and continue to be comfortable with the choices you made, Jan. And I appreciate your candor in sharing about this topic as well. Thanks again!

  8. Hi Nancy,

    Yes, things “sort of” feel normal. I’m embarrassed to dress in the locker room of my gym because I am very self-conscious of my scars. Hopefully, I’ll get more comfortable.

    The belly button thing is weird, I know, but I jokingly brag to people that I’ve had that done, and they are amazed!

    Like you, I never thought I’d get plastic surgery. But I had reconstructive surgery, which is not cosmetic, so I don’t feel guilty.

    I loved my plastic/reconstructive surgeon. He did a great job. However, I still have to wear a prosthesis in the breast that originally had cancer in order to be symmetrical, which after being disfigured by lumpectomy originally, was an important thing for me.

    I love my prosthesis!!

    1. Beth, Thanks for coming back and commenting again. I was really curious about that belly button thing! It’s also really good to hear things do sort of feel normal over time. My plastic surgeon uses the phrase, “things will settle down.” I kinda like that, so true on ALL fronts. And I understand about being self-conscious. I work out at home, thank goodness. But you know, I was more than a bit self-conscious before cancer too, so… Remember those girls locker room days from high school?? ugh. I’m glad you have a good relationship with your plastic surgeon (and your prosthesis ha!), so important. Thanks again for sharing, Beth. It’s always good to hear your perspective!

  9. Great, helpful, heartfelt post, Nancy. Thanks for including my link. I think the more we all write about it, it will help women who are trying to decide or are already going through it. Perhaps eventually, it will help women ask more questions before they start & help the surgeons be more cognizant of providing thorough information & understanding.

    I’m still saddened by how many women dive into this without having any real idea of the potential consequences & ‘detours.’ It can have a huge impact on one’s work, mobility, and finances, too, and that’s another thing to consider very carefully.

    LOL, Beth!! I love my prosthesis, too! I often go without it, but it doesn’t mind being left at home sometimes. 😉

    Nancy, I’m glad that you can finally see light at the end of the tunnel! Hugs.

    1. Kathi, Thanks for your comments and support, Kathi. I agree, reconstruction discussion has been too limited and many women are not given enough information about any of it. And it really is a lengthy ordeal with possible “detours” along the way. I was delighted to include your post, it was fabulous.

  10. Just wanted to add some more info about ‘the belly button thing’ as you so aptly call it! The belly button is not actually removed, as I understood from my surgeon, but is cut around, then the whole fascia of the upper abdomen is pulled down to join up with the incision on the lower abdomen where the flap (skin and fat) has been taken from, and a new hole is cut in the upper abdomen skin and the belly button is stitched to the new position. Makes me feel quite strange just thinking about it!
    Great to read all these comments on such a difficult topic and I hope this starts to generate more information so women can get what they need to decide about their own choices and options. Thanks Nancy.

    1. Sarah, Thank you for clarifying about the belly button aspect. Now it makes much more sense to me. More proof on how helpful good information is! Thank you.

  11. Great post, Nancy. Especially since you were shy about writing this. Reconstruction definitely has a weird fun-house aspect. You think of highways–I think of a kitchen remodel-it’s all good.

    I’m with you and a couple of others, I never would have signed up for plastic surgery before this, but as my breast kept getting smaller with attempts at breast conserving surgery (I called it the Incredible Shrinking Boob) I realized I was going to need it. And I’m happy with how it turned out, which made me realize plastic surgery can be a pretty slippery slope. I actually went to see my plastic surgeon a year later about my developing turkey wattle. He said he didn’t notice my neck, paused and said “Take off your glasses.” GREAT. While he was explaining how he could fix my droopy eyelids I could not stop laughing. (Needless to say, my neck and my eyes are still droopy. The girls are nice and perky though.)

    1. Jackie, Thank you for jumping in on this conversation, weird fun-house aspect, that’s quite descriptive and so true! Glad you are pleased with your plastic surgeon and your results.

  12. Good for you for breaching the uncomfortable topic of plastic surgery. There are so many cancer-related topics that never get discussed too loudly, but that doesn’t mean they aren’t throbbing inside. Good luck with your new chest, I hope the results are spectacular.

  13. I’m enjoying reading all the comments, and Nancy, you wrote an excellent posting that has prompted all of this discussion in the first place.

    Kathi, it’s good to hear from someone who loves her prosthesis. I wear mine to work and at social engagements and feel really great. It feels like it’s a part of me. I have no qualms of not wearing it when I’m just hanging around (pardon the pun) or exercising.

    Thank you, Sarah, for providing the information on what really happens with the belly button. I asked my plastic surgeon so many detailed questions, but I had somehow never brought the belly button up post-surgery. Pre-surgery I asked him if I would lose my belly button, and he said, no and that he only lost one belly button in his entire life as a surgeon!

    And for the record, the belly button I was born with was awesome. It has been altered and not as nice, but it will suffice…..LOL

    1. Beth, Thanks again for adding more insights here, Beth. This is part of the reason it’s so great when people leave comments; sometimes you can learn so much from what others have gone through. I love that. Thanks for your willingness to share so openly, Beth.

  14. It’s so important to hear about the process of reconstruction. It is such a process, as are many medical interventions. Yet, it’s sometimes presented as an easy fix. Have your breasts done, get a tummy tuck, and look great! Yet this decision is difficult and there are many steps that each have their own intensity as you and the others you’ve mentioned here suggest. As Marie said, it’s such a personal decision. Opting in or opting out has its own merit, and its own challenges.

    1. Gayle, Thank you for participating in this important discussion, Gayle. You are so right, no matter what a woman decides to do or not do about reconstruction, every choice has its own merit and challenge.

    1. Breast Reconstruction, Thank you for finding my blog, reading and commenting. I agree, it is a touchy subject and one I hesitated to post about due to the sensitivity. I have found sometimes those are exactly the topics most in need of being addressed. Thanks again.

  15. Nancy,
    Great post and very informative, especially for me as I have an appt in the morning with the plastic surgeon. I am scheduled for nipple reconstruction, next week, but plan on cancelling and just doing the tattooing. I am so tired of doctors and surgery’s. Thanks again for the information.

    1. Kim, Thanks so much for commenting on this personal subject. I hope your appointment goes well. I totally understand about being soooo tired of appointments and surgeries. Good luck with the tattooing and let me know how that goes. I still have that to do if I choose…

  16. Plastic Surgery, Thank you so much for the compliment. I appreciate your feedback. It’s an important topic to many and needs to be discussed openly. Sometimes I think the length of the reconstruction process is not realized by women. I’m still not finished a year later.

  17. i think it is great that reconstruction can be dicussed openly i had L.D breast reconstruction and reduction on other breast it is a long process but it is worth the wait i am very happy with my results so far

    1. Kathy, Reconstruction is a very personal topic, but I agree it still needs to be discussed with frankness. It is a long process; I’m not done yet either. I’m happy to hear you are pleased with your results so far. Good luck and keep me posted.

  18. It’s been 2 years since my expanders were swapped out for my new silicone implants. I haven’t had any more plastic surgery since. I have funny pokies of flesh at the end of my scars under my arms. My surgeon calls them dog ears, my husband says they feel like little boobies! Plastic surgeon will fix the dog ears when he does the nipple reconstruction. WEll….. I have put the surgery off more then 3 times, I guess I am reluctant to feel that kind of discomfort again. There is a another nagging little thing, some where deep down inside I feel like maybe I am asking for to much, or don’t deserve the ” finishing touches.” Sounds silly I know but its still there. But I am on the surgery schedule for September. Oh and I would really like a tummy tuck, is that to much to ask?

    1. Pam, You are not asking for too much if this is something you really want. Not at all. I have those funny pokies of flesh too, by the way… I know what you mean about feeling reluctant for that discomfort again. Good luck with things. Keep me posted!

  19. Hi, I’m so glad I stumbled upon this blog, I can’t stop reading everything. 2 weeks & 4 days ago on Friday July 26th I had a double masectomy & started reconstruction. I’m 34 years old & my Dr. suggested I was a good candidate for reconstruction. It’s all been very hard I mean I knew somewhere on the back of my mind that I was going to be the child of 2 breast cancer survivors to get diagnosed with breast cancer. But when they told me I was still in shock. I have a 16 yr old & a 10 1/2 month old. The hardest part out of all of this is when I was told I couldn’t pick up my son for 6-8 weeks. I’m still in pain ever morning when I get up from bed and when I try & do my regular house stuff. Is this normal? I know everyone heals differently. Thank you for all your posts there helping me.

    1. Christy, I’m so glad you found my blog too, and I’m happy to hear you find reading through posts to be helpful. That’s why I write them! I’m sorry about your diagnosis. You are dealing with an awful lot. It must have been so difficult for you to hear you wouldn’t be able to pick up your son for an extended period of time. I’m sorry. I’m sorry about all of it. Take your time getting back into the swing of things. Healing physically takes a while. Healing emotionally takes even longer. Be patient and kind with yourself. Thanks for reading and commenting. My best.

  20. I had reconstruction following a large tumor lumpectomy; to “match,” the other breast needed an implant, too. Those surgeries resulted in the disappointments of my life. The tumor side still has daily pain two years out, and the size and shape is undesirable to me; no has seen it–not a cover-up, just covered up. Additionally, there is very little sensation–another disappointment, big loss, and things no one tells you in advance, because surgeons do still they are gods in the plastic surgery department. Do it again? I don’t know, as that ship sailed. I did not follow with radiation or chemo or hormone therapy–those I have every confidence were the best decisions for me, and if honest, I wish I’d tried natural therapies to reduce and eliminate the tumor; daily pain IS a pain. Are surgeons dishonest…I’d like to say a resounding No, but…omission is not honest or forthcoming in my book. So, life goes on, and unfortunately, we become “experts” on our anatomy after the fact! Most days I am at peace, but there are those moments, but anger about loss is more “flare-up” than ongoing, so I call it human and “good enough.”

    1. Maggie, I am sorry you’re disappointed not only with your reconstruction outcome but also with your surgeons. I can’t agree that they are dishonest or as you said, think they are gods. They do tend to see things from a surgeon’s point of view, of course. This is why it’s vital to gather as much information as you can, self-advocate vigorously for yourself and ask questions until you feel satisfied. I’m glad most days you feel at peace. Feeling anger and loss now and then is understandable and to be expected. Thank you for sharing. My best to you.

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