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Dear Plastic Surgeons: 14 Things Breast Cancer Patients Want You to Understand About Breast Reconstruction

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.

Dear Plastic Surgeons, 13 things your #breastcancer patients want you to understand about #breastreconstruction #plasticsurgery #mastectomy

 

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?

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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.

 

Facing Your #Mastectomy & Making Reconstruction Decisions #breastcancer #breastreconstruction #ebooks

 

Dear Plastic Surgeons, 13 Things #BreastCancer Patients Want You to Know about #breastreconstruction #mastectomy #plasticsurgery

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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.

Beth Gainer

Thursday 13th of December 2018

Nancy, this post really resonated with me. I agree with Alene that this should be required reading for people in any aspect of the medical arena.

One regret: I didn't keep pictures of my breasts. I'm thinking of being gutsy enough to call the plastic surgeon's office to get the pictures. I am grieving them still, even though I knew they'd have to go. Prior to cancer, I had lovely breasts, completely satisfied. After cancer, it was body image problems to the max, as you know.

Thank you for such an important post.

Nancy

Wednesday 19th of December 2018

Beth, I wish I had requested pictures, too, or taken my own. I never even thought of either. As Donna suggested, I suppose I could still ask for them. I'm sorry you have that same regret. Let me know if you make that call. I haven't gotten up the gumption to do it. But then, I wonder if seeing them at this point would make me so very sad. Anyway, thank you for sharing and for understanding. x

C Elizabeth

Wednesday 12th of December 2018

I’m so glad discussion regarding plastic surgery. There really appears to be to many complications. Then repeat Surgeries. Very concerning .

Sust hibson

Tuesday 11th of December 2018

First doc screwed it all up. Three or four surgeries, mishaps. He kept apologizing. Came highly recommended. My friends and I concluded he has an eyesight problem ..after last deal. Never went back. Took me a year before anyone would even consider fixing g his mess. #2 was a total jerk. I was intubated, asked him a question he got furious and cancelled the surgery, then two weeks later he walked out on his practice, left everyone hanging. My 3rd and.most wonderful plastic surgeon is Dr Sylora. Who was brave enough trained enough kind enough to fix the mess. She could not make it perfect but she did HER best. She showed me my before and after pictures. I cried I hugged her. She even said that if I continued loosing weight for health reasons she would fix them again needed. My happiness has caused me to take better care of my health. Well sorry Nancy but you asked...

Nancy

Thursday 13th of December 2018

Sust, I'm so glad surgeon #3 came through for you. She sounds like a real gem. And yes, I did ask! So, thank you for sharing!