Note: This post was updated to include #14.
It’s been eight years since I wrapped up my breast reconstruction project. Reflecting about this, I decided to write a letter to plastic surgeons everywhere sharing 14 things I would like them to better understand, and I’m pretty sure others like me would as well. Not that most plastic surgeons 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 open letter to you because you are so 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, this 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 from time to time. 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. 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 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 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 focus so much on how things look.
This one’s a biggie. To us, 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 some of us would 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 very 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.
At such a time, 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 during such a time, 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’, could we please not be required 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, by me anyway. If you relate, leave a comment. I gotta mention this next time I enter that darn ‘photo booth’.
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 everywhere 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?
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.