Cassandra “My surgeon was a woman…”

Hello, Kimberly! I’m Cassandra & I’m a breast cancer survivor. I had my bilateral mastectomy in 2013, followed by chemo & radiation. My surgeon was a woman, and I thought she would understand. She didn’t listen. I have an added element in my story; my surgeon was also a Lieutenant Colonel in the US Army. I’m a veteran of the Air Force & Army. I’m also a 100% disabled veteran.

After seeking medical attention from the VA Medical Center, I was sent to a military base for treatment. (I was given no choice.) I explained over & over again that I did not want reconstruction. “Please make me flat. I don’t want anything in my body that shouldn’t be there.” I already had four tumors that needed to be removed, and they certainly shouldn’t be there.

I ended up with extra skin, or dog ears, “in case you change your mind.” It was bad enough I was losing my breasts, but to have this ugly, bumpy chest afterwards was not okay with me. I believe it was the following year when I found the courage to request a revision. The plastic surgeon to whom I was assigned was an old retired doctor that did some work at the military hospital. He didn’t listen to me at all. He even forgot who I was from the time we had our consultation to the time of surgery. Although the dog ears were removed, I ended up with worse scarring. They were hypertrophic. It was awful! I then had Kenalog injections.

I don’t like seeing my chest. I still have some pain in some areas. I do not want more surgery.

Thank you for your attention.

 

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Suzie – “Deflated” after explant

Editor: For women who initially chose implant reconstruction, and are dissatisfied with their implant experience (there are multiple reasons this may happen – pain, infection, capsular contracture, skin healing issues, implant migration, etc.), the next step is to remove the implants.  This procedure is called “explant.”  After explant, there will almost always be significant excess skin remaining, and if the surgeon does not remove it, the patient is left looking “deflated” which for most women is an absolutely unacceptable result.  Removing the excess skin takes time and skill.  Women who choose to explant are no less deserving of a decent flat result, than women who choose flat from the beginning.  As competent adults, women are allowed to change our minds FOR ANY REASON, and surgeons are duty bound to respect our wishes.  Our bodies, our choice.
I had been diagnosed with hormone driven breast cancer on August 5, 2017. I had a double mastectomy with immediate reconstruction which cause me nothing but pain and discomfort even after the implants were put in. I couldn’t take it anymore, constant pain and got extremely frustrated after just 8 months of having them so I chose to have them removed!
The insurance company tried to deny this surgery on the grounds I did not meet two criteria: the implants were not leaking, and there was no infection,  But my plastic surgeon told me it would be covered under “revision”! He got the notice from them the day before my surgery and I received the notice the day AFTER! Well, he fought with them and overturned that decision. However, I am not happy with the cosmetic results!
Suzie
He made NO ATTEMPT to remove any leftover skin and I look like my tits have just been deflated! Well, after

sending a scathing email to my nurse navigator, which she in turn shared with the plastic surgeon and her administrator, the plastic surgeon’s office called me the very next day to bump up my appointment to next Tuesday. He wanted to see me right away but the scheduling as not conducive to my schedule.

[To the left] is a picture of how I look currently. Let’s keep sending this important message to both the surgeons and insurance companies! These results are completely unacceptable!

Not Putting on a Shirt Central

Following are links to all NPoaS resources and media coverage that give the background of what we’re about, how to connect with us on social media, share your story, and support the work of Not Putting on a Shirt.

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Our Mission

Our mission is to advocate for satisfactory cosmetic outcomes–as agreed upon by mastectomy patient and surgeon(s)–for those who choose to “go flat.” We inform and support patients, demand increased accountability for medical professionals and institutions, and collaborate with patients–and the surgeons who care for them–in our efforts to establish resources and protocols that will make a difference.

The Problem

Patients’ Wishes Versus Surgeons’ Choices When a Mastectomy Patients Opts Not to Have Reconstruction (or When Reconstruction Fails to be an Option)

Media Coverage

  • Cosmopolitan magazine article
  • Cleveland Channel 19 news coverage
  • Yahoo!
  • The Daily Mail has picked up the story. Says Kim: “There’s one inaccuracy on my cursory reading of it, which is that I met with the CXO (Chief Experience Officer, Adrienne Boissy), not the CEO. That meeting produced absolutely nothing but platitudes and an empty tank of gas (it’s a 5-6hr round trip for me).”
  • Women in the World is a digital platform in collaboration with the New York Times, that features news and commentary.

More of Kim’s Story

  • Condensed version of Kim’s story
  • Kim’s letter to Cleveland Clinic’s CEO 5/27/2017
  • Kim’s demands and Cleveland Clinic’s response on 7/30/2018
  • Kim’s August 2018 Letter to Highmark Insurance requesting that they rescind Dr. Bernard’s reimbursement, on the grounds that she did not consent to the procedure, and additionally, his actions necessitated an additional surgery for which they will foot the bill.

Other Mastectomy Patients’ Stories

Share Your Story

If you have “gone flat,” we’d like to hear your story. Complete the survey, send us a picture, or tell us your story.

  • Your participation in the “Going Flat” After Mastectomy Survey will help us understand what is happening to patients like you, what works well, and what needs to change. Go here to get your code to participate in our survey and data collection. Participants may provide as much or as little information as they wish.
  • Share your story in photos or in your own words (or both). Email us (NotPuttingonaShirt@gmail.com) and we will publish your story on our website (which is still in the works) and social media. Submissions can be anonymous or we’ll use as much of your name as you’d like.

NPoaS in Social Media

Support the Work of NPoaS

  • Buy a Not Putting on a Shirt t-shirt
  • Share Not Putting on a Shirt’s Printable Intro Brochure (Let us know if we can send you some!)
  • Sign Kim’s petition to Cleveland Clinic

Donations     Not Putting on a Shirt was founded in June of 2018. Our future efforts include gaining 501(c)(3) tax-exempt status; however, currently, donations are not tax-deductible. Donations in support of our work may be made in the following ways:

  • PayPal to NotPuttingonaShirt@gmail.com
  • Send check or money order payable to Kimberly Bowles to Not Putting on a Shirt, PO Box 111215, Pittsburgh, PA 15238
sidewalk protest 2

Walk Day is a Week Away

Walkers

All of the information you will need is on this page. It includes where to park, important times, and walk route. Please print it or bookmark it and refer to it with any questions on Walk Day.

Start at Fairfax Park, near Quincy Avenue and 83rd Street, Cleveland, Ohio

12:30 Sign-in   –   1:00 Walk begins   –   Lunch to follow (about 2:00)   –    Finish by 4:00

If you haven’t yet registered for the walk, but would still like to come…

40224826_2167309283550057_1753895340370558976_nNo problem!

Come to the sign-in table on walk day and you can register then. We still have t-shirts available in most sizes.

Registration options are:

$10- Walk only; no t-shirt or lunch

$20- Walkers who are getting a t-shirt; no lunch

$20- Walkers who are getting lunch; no t-shirt

$30- Walkers who are getting a t-shirt and lunch

Sponsorships are still available! Please do not let registration fees deter you!

Direct all questions to NotPuttingonaShirt@gmail.com.

If you want to show your support, but can’t make it to the walk, join us virtually.

40645523_10157680981318294_3630199250131877888_oShare your photo on Facebook (@NotPuttingonaShirt), Instagram (notputtingonashirt), or Twitter (@not_shirt). Your options are to show your flat mastectomy result, wear your Not Putting on a Shirt t-shirt, or use your own sign or t-shirt.

We are welcoming photos starting now, but ask as many people as possible to participate during the walk next Saturday, September 8. That’s 1:00 Eastern time (12:00 Central, 11:00 Mountain, and 10:00 Pacific).

Your participation sends a message.

  1. Women are capable of deciding whether to go through the breast reconstruction process or not. A flat cosmetic result is good outcome following mastectomy, for women who choose it.
  2. When a woman chooses a flat result, her surgeons should provide the best cosmetic result possible.
  3. A satisfactory flat result is possible. If a surgeon is not committed to creating a smooth, flat result, she or he should refer the patient to a surgeon who will do the job well.
  4. It is egregious for a surgeon to leave pockets for implants, when a women has asked for a flat result or stated that she does not want reconstruction.
  5. We are committed to changing the system that allows surgeons to disregard patients’ wishes.
  6. Flat chests and chests without nipples are not obscene. (We’re looking at you, Facebook.) Women deserve to share their stories through imagery. Women deserve to learn what to expect through imagery. Women deserve to be proud of their changed bodies and to show it out loud.
  7.  Share in the comments here or on Facebook. I’m certain I am forgetting some points.

Some cosmetic results for women who had requested a flat result or said they would not have breast reconstruction:

 

Flat and very pleased with the results- A Previvor’s Story

I am 8 months out from a prophylactic bilateral mastectomy, which I chose to have due to a BRCA 1 mutation. Before my surgery, I joined the FB group Flat & Fabulous, and seeing how many women’s requests to be made flat were ignored made me very worried. I must have sent my surgeon 10+ messages explaining that I wanted to be made as flat as possible, and I sent her many photos of what I deemed to be acceptable and unacceptable results. I also consulted with a plastic surgeon prior to my mastectomy, and while he did not participate in my actual surgery, he did ink me up with permanent marker the preceding day, to provide my breast surgeon with some guidance. I specifically requested a “gull-wing”  scar pattern (you can make such requests!) because I find its curviness aesthetically pleasing,  and because I can wear lower-cut shirts without showing my scars if I feel like being sassy but not *too* sassy, lol.
I am very pleased with my results. I did have minor revision surgery under sedation 6 weeks ago to minimize some lumps I had on my side, but I think my surgeon did an excellent job, overall. For what it’s worth,  I wore a 36G bra before mastectomy, so the excuse that a surgeon can’t make a woman flat due to their chest size doesn’t hold water. It isn’t wise to expect a “perfect”  post-mastectomy result (medicine is an imperfect science, and closing a round opening with a linear seam is tricky), but we should be able to expect acceptable results.
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