Dear Plastic Surgeons: 14 things breast cancer patients want you to understand about breast reconstruction
This post is an open letter to plastic surgeons everywhere sharing 14 things breast cancer patients want you to better understand. Not that most don’t already understand these things, but there is always an opportunity for better understanding, right?
Dear Plastic Surgeons (who do breast reconstruction) everywhere:
I am writing this letter to you because you are important to many women like me who’ve been diagnosed with breast cancer or have a loved one who has been. We know you want to help, and we know you want to better understand all this from our perspectives. So, that is the goal of this letter – to help you better understand where we are coming from.
It is not meant to criticize or suggest you don’t already know these things. It’s meant to reinforce what you likely already know, but perhaps could use a reminder about. So here goes.
Btw, this list is in random order because it was written as thoughts came into my head, and I did not change them around.
14 Things Your Breast Cancer Patients Would Like You to Better Understand About Breast Reconstruction
1. Please remember first and foremost, a woman is whole with or without breasts.
Often, I see it stated that breast reconstruction will make women feel whole again. Nope. Uh, uh. No. Again, breasts do not make us whole. They are darn important parts to our womanhood, but they are not what make us whole or complete.
As Lisa, my friend and fellow blogger who opted out, says so eloquently in the sum of all my parts:
The sum of my parts makes me whole. I don’t feel less of a woman without breasts, just a woman less her breasts.
2. When you meet us for that first time, please remember we’ve just heard those words, you have cancer, and that we are likely feeling stunned, overwhelmed, afraid, uncertain and a whole bunch of other emotions. If we haven’t heard those words ourselves, a loved one likely has, and this is why we are contemplating a prophylactic mastectomy and possibly reconstruction too.
This means you might need to repeat stuff. Again. And again. And yet again. You might need to slow down, take extra time and be extra patient.
3. Be sure to explain all reconstruction options clearly, even the ones you don’t do – perhaps especially those. And, of course, never judge us for the decision we ultimately make whatever it might be.
Discuss all options including opting out, implants and flap (autologous) procedures. Please be sure we understand all our choices and help us get to our decision but do not come across as if you are in favor of one over another unless one is far better suited due to our particular medical situation.
And don’t forget to talk about nipples and our options for reconstructing or opting out here too. And just so you know, reconstruction or no reconstruction, nipple envy is real. Very real.
4. Treat us respectfully and as a partner in this process – the most important one.
We know you look at women’s chests every day, many times. This is all routine for you. For us, it’s a terrible invasion of our privacy to disrobe from the waist up time and time again and have strangers examine, poke, prod, photograph and yes, even draw with Sharpies on our chests.
5. Try to include our partners in conversations, too, if we want them them included, of course.
Obviously, all this changes things for them dramatically too. Ask them if they have questions or concerns or would like to speak with you privately.
6. Don’t just focus on how things look.
This one’s a biggie. All this is about way more than how our chests will look. It’s also about how our chests will feel and more importantly, how they will never feel again.
Reconstructed breasts might look great to you as a plastic surgeon, but this doesn’t necessarily mean things will ever look or feel anything close to great to us.
7. When your nurse takes those before photos of our original breasts, offer to share them with us.
Some of us don’t/didn’t take any ourselves for various reasons and might very much appreciate having a photo or two. It would help with grieving and yes, we grieve for our breasts.
8. Recognize that we are indeed grateful to you for your incredible skills, but…
It’s normal for us to feel satisfied with your work but at the same time to also feel completely dissatisfied.
9. Don’t make us feel uncomfortable (not that you would) about crying. Or laughing. Or whatever we might end up doing or saying. In fact, encourage us to talk about our feelings and then, validate them. Tell us you understand how hard this must be for us.
Our emotions might be all over the map, and we need you to understand how hard this is. Just because we appear stoic, don’t assume we’re holding things together on the inside. I mean, this situation we find ourselves in really sucks.
10. Always say hello, make eye contact and chat a bit before you get to the business of looking at our chests.
11. Never assume it’s always best to go bigger. It’s not.
12. If we choose reconstruction, always ask how we feel about the ongoing process as it unfolds. Value our input. Listen to us.
It’s not always easy to speak up, so you might need to ask us directly how we’re feeling about things. If we say we’re not pleased about a certain result, don’t take it personally.
This isn’t about you. It’s about us and this traumatic, life-altering experience we are living through that changes us forever physically and often emotionally as well.
13. Follow up with us.
We understand you’re busy, but at a certain point after the conclusion of this lengthy process (if that’s the route we chose, of course), follow up with us. Find out how we’re doing. Ask about our “project” satisfaction. Advise us about if and when we need an MRI to check on things. See if we have any questions or concerns. Sometimes, it’s hard for us to make that call, much less drag ourselves back to your clinic. Just follow up. This shows you care about our continued wellbeing and satisfaction with our reconstruction.
14. About that ‘photo shoot’.
When we are escorted into the ‘photo room’, please don’t require us to stand there nearly stark naked during our photo shoot. It’s humiliating and driving me crazy. Again. A wrap for our bottom half would be appreciated or else allow us extra time to get partially dressed again.
If you relate, leave a comment. I gotta mention this next time I enter that darn ‘photo booth’.
As I conclude this letter, I hope you will keep these things in mind when you walk through the door, meet your next breast cancer patient and sit down to talk about breast reconstruction. Undoubtedly, she will appreciate it.
Sincerely and with gratitude for your compassion and expertise,
Your breast cancer patients who are contemplating reconstruction
Have you had breast reconstruction, if yes, what kind and how did things turn out for you?
What would you add to this list?
If applicable, did you opt out and if so, why and how do feel about your decision today?
If you’re a plastic surgeon, what thoughts do you have about this list?
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Featured image above is a photo I took of a piece of artwork on display at the breast center I go to. The artist is Martha Folz. In the artist’s words: “These are the women of my life (my mother, my sister and my daughter), all interconnected, all searching for our whole selves, all of us in different places, struggling with the same question, ‘who am I?'” I love it and thought you would too. The message and mosaic format seem to fit perfectly for this post. Don’t you agree?
Note: If you’re contemplating breast reconstruction following a mastectomy or a lumpectomy, you might wish to read my ebook, Facing Your Mastectomy & Making Reconstruction Decisions. Available only at Nancy’s Point.
PJS
Thursday 18th of August 2022
My comment today regarding reconstruction is just how annoying it is for me to see that plastic surgeon's name , on my current permanent health charts . I had exactly ONE informational appt with her , decided against any reconstruction , and yet there her name is , on my current charts , as if she did anything! The body shaming from my awful surgeon was bad enough , thank god she is out of my life for good. So glad I trusted my own instincts to do what I felt I could live with. Couldn't be happier , and shout out also to the wonderful phone conversations with ACS folk . They tell you STRAIGHT and answer questions honestly . Thank You .
Ellen Tannenbaum
Wednesday 17th of August 2022
I went flat on one side with my first single mastectomy because I had seen what friends had gone through with various types of reconstruction or elective augmentation. Only regret was that my surgeon would not do a prophylactic mastectomy on the undiagnosed side even though this was my second BCA diagnosis. Thirteen years later mammography showed DCIS in remaining breast and now I am completely flat. (For anyone concerned about previous comments here about the outcome, techniques have improved and many doctors do Aesthetic Flat Closure; and definitely can do additional revision if the first surgery leaves flaps or concavity.)
Elaine
Friday 20th of August 2021
When I first read your #2 point, "When we meet you for the first time"... I began freaking out. I did not meet a plastic surgeon and have not met a plastic surgeon and I am two years out from surgery. I haven't wanted reconstruction (more below) but I sure wanted to know why no one spoke to my about seeing a plastic surgeon.
I phoned my radiation oncologist today. He told me that in my situation reconstruction wasn't recommended immediately after surgery. He told me I needed to be well out of radiation to even qualify for reconstruction and he didn't recommend it even now. That made me sigh with relief that no one was keeping the plastic surgeon from me. Early on my then boyfriend said to me, "I don't love you for your hair. I don't love you for your breasts." He told me I don't need to have reconstruction at all. He may be Mr. X to me now, but, those words gave me permission to do what I wanted. My feeling is, "This is your body, your life." You have to do what is right for you. For me, reconstruction means more surgery and more hospitalizations. I suffer from PTSD and losing control over my body or my autonomy makes hospitalizations extraordinarily difficult. So, there's one reason I opt to not have reconstruction. I have also had many complications since the surgery including infections after the surgery, lymphedema, then lymphangitis. I just don't want more hospitalizations. I wore the prosthesis for awhile but now I don't bother with it. For awhile I thought, " I'll wear it if I dress up" but even then, I feel I can be attractive with one breast and a lot more comfortable. I have chosen more stylish clothing since my mastectomy than before. I feel more attractive now, even in a compression sleeve and glove and with one breast. I say to myself what Mr. X said to me, "I don't love myself for my hair. I don't love myself for my breasts or my arm. I'm more than that. It is so good to see the comments here. Thank you, Nancy for your articles. I look forward to seeing them in my mail box each week. A couple of weeks ago I was waiting for my doctor in the examining room, reading one of your articles feeling supported by you.
Lin
Wednesday 12th of August 2020
Hmmm, I did have implant reconstruction immediately following a mastectomy with lymph node removal. Major infection required emergency additional surgery so I could start chemo. Those horrible photos for the plastic surgery unnerved and angered me, this is not a free procedure but the surgeon can use them for conferences or the business web site. I did not even know if my face was included. Anyway after 35 rounds of radiation I passed on reconstruction, my skin was too damaged and reconstruction would require a much more involved process. I have reconstruction envy, think had I had reconstruction I would care more about my weight, my appearance in general. If I was smarter maybe I should have dying of old age with two healthy breasts envy. Being a widow my situation did not involve a partner and may mean less encouragement by the care team for reconstruction.
Nancy
Thursday 13th of August 2020
Lin, Regarding the photos, rest assured, faces are not used. I understand the need for all the photos, but I sure think taking them can be done a bit more discreetly. It's understandable to have reconstruction envy from time to time. That is normal. I still have nipple envy and always will. Wrote about that here: https://nancyspoint.com/nipple-envy/ It saddens me to think you may have had less encouragement by your care team for reconstruction due to being a widow. I hope that was not the case. At the same time, opting out is a completely reasonable option and the route many choose, as you did. Anyway, don't beat yourself up too much about any of this. Cancer sucks. Reconstruction or no reconstruction, it sucks. Take care and thank you for sharing.
Anney
Monday 31st of December 2018
Dear Nancy, I really enjoy your blog, thank you! I wonder if anyone could provide their experiences with having one breast removed and contemplating having the other “normal” breast reduction surgery. This is my present circumstance and I am trying to adjust to my implant but I don’t want to “ruin” what I have left - (not causing me any problems currently-it Is just so much larger than the uncomfortable implant). Hate to go thru more surgery but they are so uneven at this point. I would love if you have any BC websites to list for support- I am not on Facebook tho. Thank you,
Nancy
Friday 4th of January 2019
Anney, I would recommend having a very frank discussion with your plastic surgeon about your discomfort, concerns and questions. It seems like a reduction surgery would certainly be an option to consider. It's understandable to feel hesitant, but just talking about it doesn't mean you have do anything until if and when you're ready. I can recommend PRMA Plastic Surgery as a starting place. The doctors there have a strong online presence (that's why I know of them) and do many types of procedures. Definitely start by asking your PS. Good luck and thank you for sharing.