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Dear Plastic Surgeons: 13 Things Breast Cancer Patients Want You to Understand About Breast Reconstruction

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 13 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 sole 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

 

13 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. 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.

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

32 thoughts on “Dear Plastic Surgeons: 13 Things Breast Cancer Patients Want You to Understand About Breast Reconstruction

  1. Nancy, thank you for such a well-written article. This should be required reading and practice in medical training- communication with the patient and compassion need to be required qualities/skills of all people in medical training. Even surgeons!!

  2. I am surprised in your comment about exercising. I thought it was the main treatment after surgery, radiation and those aromatase inhibitors. I spend most of my time exercising. Or going to dr appts and I am 2 years past Dx. Nancy I need some help in making myself happy. I constantly think of going to heaven. Reading your piece about your mom and some of the others make me feel worse. My mom was at work had a pain and went to hospital and died 3 days later small cell lung cancer spread to her liver. It was a blessing but now I am not so sure she may have suffered a long time alone without saying anything, I lived across the ocean but called her every Sunday and we talked for hours. I am worried about my own breast cancer which I was told I am in remission. The psy drugs are not working. Maybe an article on that would help.

    1. Kat, I am not sure what comment about exercising you mean?? Kat, you need to talk frankly about your feelings with a professional. If your meds aren’t working, perhaps others can be tried. Your depression is worrisome. Don’t stop pursuing help to get your needs addressed.

  3. I did have implant reconstruction after my bilateral mastectomy. It was a rough time emotionally as well as physically. The expander s were miserable but still not as bad as the mastectomy itself. I honestly believe I was close to a nervous breakdown knowing that my breasts would be cut off, examined and disposed of. So, believe it or not, I find myself grateful for Dr Ryan Marshall of Missoula Mt. He has since moved to N.C. (Missoula’s loss). He was smart, kind, and comforting. He made me feel at ease from the moment I met him. He provided me with pictures of my own breasts. I still look at them occasionally. I miss them. And although I will never love my implants, they do at least make my clothes look better! I was determined i would have breast tattoos, I have since changed my mind. I simply couldn’t stand the thought of being poked and prodded one more time. I wish the best for every woman, or man, going through this, and I hope they have a Dr as wonderful as mine.

    1. Donna, It’s nice you got those photos. I suppose I could still ask for mine; I wonder how long they keep them. Somehow, I haven’t done it. My PS moved out of state too. I will never love my implants either. Not sure I’d choose the same path if I had a chance for a redo. I did have the tattoos. I’ll tuck my post about that experience in next week’s newsletter, if I remember. It all gets to be too much sometimes, so I understand why you said, enough. I’m glad you had a wonderful doctor. That sure helps! Thank you for sharing.

      1. One of the ladies in my other support group decided to go back and get rid of implants and is now full of regret
        She says she thought she would be flat as on completely flat. (Msybe smoothe) but she days she has flaps. So your expectasions need to be clear.

  4. Nancy, you are such a wise and wonderful woman. I am just seven weeks out from a partial mastectomy. I still have my breast but they are two different sizes. Although I have had the what-ifs of plastic surgery, they will probably stay that way unless radiation shrinks them much more. I am also a nurse and recover women from their surgeries. Your thoughtful articles are helpful to me so that I can understand what they are going through and be a more effective teacher and healer.

    1. Sharon, Thank you for your kind words. I’m glad you’ve found some of my articles helpful. Good luck with your recovery, radiation and whatever else is ahead for you. And thank you for all you do as a nurse to help others.

  5. At 74, I was found to have 4 breast tumors , 2 in each breast. A double mastectomy was done. I did not meet with a plastic surgeon, knowing I definitely did not want reconstruction. I have bras and prostesied which I may wear for “formal “ occasions; but most of the time I “go flat” – dressing in layers. I am very comfortable with my chest and have never regretted this decision. I just wish I knew others who have chosen this path.

    1. Terry, Good for you for knowing what you wanted and did not want. I’m glad you are comfortable with your decision and outcome. There are many others who have chosen the same path. There are groups on Facebook and websites about going flat. They are wonderful resources. Here is one: https://imean.home.blog/2018/09/10/not-putting-on-a-shirt-links/ Here’s another: http://breastfree.org/index.php And another: https://www.rebeccapine.com/. On Facebook there is a page called Flat and Fabulous: https://www.facebook.com/FlatANDFabulous. There are other resources, but these are a few places to start. Thank you for sharing.

    2. Hi Terry
      I had a partial mastectomy in 2011. On the 5th anniversary of the surgery, Christmas eve 2016, I found a lump in the same spot on the same breast while showering, only bigger & better. I opted for a bilateral mastectomy & it was performed in Feb. 2016. It was 100% my request & choice. I am so glad. On the post op exam of the breast tissue, a small cancerous lump was found on the other breast which was never seen on the pre op mammo & MRI. I am very comfortable w/my choice. I never wear a bra unless it’s a dressy occasion & I love the comfort. My girls were a size DD & in my 74 prior years, I never owned a comfortable bra. I wore layered clothing for about a year post op & now I figure “who cares?” I was always jealous of my small breasted friends & now I’m wonderfully comfortable in the summer on those dank August days. If I were 20 years younger I may have opted for recon. Now it really doesn’t matter. I’m 76 & happily flat.

    3. Hello. I didn’t have reconstruction on my left breast And, honestly, I really don’t worry to much about it. Considering that I am pretty flat, it was not a dramatic change in my appearance. Also, after doing research, I decided not to put myself through the awful process. Lol

    4. Hi Terry

      I had bilateral mastectomy in August 2018. I chose no reconstruction. I do not regret my decision. Like all of us
      I miss my breast. I wear prosthetics. At home no and if
      To hot no. I have one major disappointment may sound
      Idiotic I wanted tattoos. What no one mentioned if you
      Get lymphedema no tattoos, manicure or pedicure. Oops
      Be nice to let a person know. Two incurable conditions.
      Oh well as Nancy expresses I didn’t need any lessons and all this did not make me a better person.

  6. Thank you Nancy. I wish I was able to read this back in September 2011. I Knew within a week of diagnosis I wanted a bilateral mastectomy without nipple or skin sparing. I had invasive bc and numerous Drs and other medical professionals said that would be best. My female surgeon recommended I see two plastic surgeons, both female. They both said I absolutely should have reconstruction. If not, I would be very disappointed. I was shown many very scary pictures of women who didn’t have reconstruction. I didn’t have any extra weight so implants were my only option, though one Dr said the lattismus surgery might be more realistic. I, thankfully didn’t listen to them and have been flat. I’m very happy with my decision. My chest looks great and if I choose to wear a prosthesis I can, or not. I did not have any additional surgeries or complications. I recommend women talk to other women before making a decision.

    1. Deborah, Good for you for doing what YOU wanted to do. I’m so glad you are happy with your decision and are comfortable with how you look now. That’s just great. I like your recommendation to talk with other women before deciding what to do. Good advice. Thank you.

  7. 14. Dont blame everything that goes wrong on a patients weight. It may make your job a bit harder, but it is not the only reason for slow healing, infections, seromas, and long drain times.Thin people have those same complications too.

  8. This is a good list Nancy. Different ones will likely hit closer to home for each woman reading this. That stands to reason because we each have our own unique experiences. I especially appreciate #6. Others seem to want to focus on looks, we, the women going through it and our partners, focus more on feeling and comfort.
    It is one of the reasons I opted to not have reconstruction. Nothing could match the feel of my God-given pair. I have never regretted my decision, wearing prosthetics to work and many social outings, but usually flat at home and always flat when exercising. Thank you for the mention in #1. I am coming up on the 10th anniversary of my mastectomies and I don’t feel less of a woman or less whole. I feel very fortunate to be living life fully. Thanks for another compassionate, and sharp, post.

    1. Lisa, I’m glad you like my list. I’m with you on #6. My plastic surgeon didn’t seem to fully understand that one. It’s about so much more than how things look. I always remember those wise words of yours in that wonderful guest post you wrote, so you’re very welcome for the mention. Thank YOU. As always, I appreciate your insights. Thank you, Lisa.

  9. For me the decision to not have implants wasn’t an easy one. I waffled back and forth both before and after surgery and was lucky to have a wonderful compassionate surgeon who told me to take my time. He said that he could even do implant surgery up to a year after the mastectomy so I shouldn’t feel rushed. The thought of having something foreign sitting in my chest didn’t appeal to me so that was the deciding factor for me to decline implants and go flat.
    Thankfully, prosthetics have come a long way since I started wearing them twenty years ago. Gone are the heavy clunky versions that make your shoulders ache. Today they are much lighter and more comfortable and there are many more styles available. To be honest though, I hardly every wear my prosthetics unless I’m going out to work or an event. I’ve adjusted to my appearance and haven’t regretted my decision. I’m happy in my skin….just as I hope the women who opt for reconstruction are.

    1. Lennox, How wonderful that you had that compassionate surgeon who didn’t rush you. I must admit, I did feel rushed to decide things. So glad to hear that prosthetics have come a long way. Thank goodness for that! Good for you for wearing yours only when you want to. I’m very glad you remain pleased with your decision to opt out. Thank you for sharing.

  10. Yes, I have had reconstruction and I wish the direct-to-implants option had been discussed with me. I’d have made the trade for smaller breasts to not have to go through TEs. And I wish I’d been given a sense of how I’d end up looking and the downsides to implants. I’m grateful that my plastic surgeon talked my breast surgeon into doing my incisions under the fold and I’m grateful my nipples were spared, but I didn’t have a clue how not like me I’d look. And I was too shell-shocked and pressed for time to know what questions to ask.

    1. Secret Agent Woman, You’re certainly not alone in that shell-shocked feeling. This is one reason perhaps why so many women feel rushed to make decisions before they’re ready or totally informed. Taking some time to think things through is so important. Thanks for sharing.

  11. 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…

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

  13. 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.

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