Sindee – She has to wait years for revision

Editor: Going flat after mastectomy is a decision that skews towards the older patient population.  After age 60, close to four out of five women forgo reconstruction. Oftentimes, as with Sindee’s case, it’s because the risks of additional surgeries outweigh any cosmetic benefit, due to slower healing simply because of the woman’s age (Sindee was 60yo), and/or co-existing health conditions that affect surgical risk such as diabetes (as with Sindee) or heart conditions, which are more common in older women.  The harm of flat denial being inflicted on these older women is especially great, because of the double bind that their remaining years are likely shorter than that of a younger patient, AND they are less able to pursue revision surgery.

My first surgeon, a woman at CINJ Rutgers New Brunswick NJ, kept pushing me to get a lumpectomy and reduction [Editor’s note: with a lumpectomy, it is often an option to surgically reduce the opposite breast to “match” to improve the cosmetic result]. I kept telling her no.  Mastectomy and flat. NO revision.  I was 60 and definitely not being swayed!  She knew I was overwhelmed.

She mentioned twice about leaving the side fat flap. I said as long as I’m flat after. Triple negative [Editor: “triple negative” is a subtype of breast cancer that has fewer treatment options and the worst prognosis of all subtypes] was scary as hell!  I awoke from surgery with dog ears and a full blob of skin under my very odd looking mastectomy.  I changed surgeons for my prophylactic second mastectomy. But I had 25 radiation treatments so now I’m not able to even fix her mess.

[Editor: irradiated tissue is forever compromised from scarring, and can have problems healing after surgery – this is one reason why many women choose to go flat in one surgery, to avoid operating on irradiated tissue, and when that choice is taken away it changes the risk profile of revision surgery such that many women are forced to wait years to get their bad result “fixed.”  And many women end up not getting a revision surgery at all due to the increased risk.]

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The difference between Sindee’s two mastectomy results is extreme, and was the result of one surgeon “leaving a little extra” (right) and the other surgeon respecting her wish to go flat (left).

My new surgeon made me flat as requested. So I’m pissed I have one mini maimed Boobette and one great flat one. My oncologist said just last week to wait a few years and hopefully, I’ll be able to get my left baby Boobette flatter. But more surgery is upsetting. I have type 2 Diabetes so always a bigger risk post op.

Stephanie – “The last thing I said to him on my way to surgery was, ‘I trust you’”

Editor: Like so many women victimized by flat denial, Stephanie’s experience was an outright betrayal of the sacred confidence she had placed in her surgeon.  And it took her some time to accept the reality of the violation she had experienced.  Her surgeon admitted to her face, after the surgery, that he had purposefully left “a little extra” in case she “changed her mind.”  The paternalism and sheer audacity are shocking. But this is what happens when surgeons are not held accountable – and it will continue to happen, until, as Stephanie says, we expose this cruel, abusive practice for what it is: medical assault and battery.

 

I went in for a double mastectomy on August 14th. Several of my closest friends had walked this path before me and I had no idea there were hidden pitfalls ahead. They both wanted flat and got flat. I told my surgeon that I wanted a flat chest. He looked at his shoes and muttered that a lot of women had been requesting that lately. He said he was concerned that I would look in the mirror and be depressed by what I saw if I was flat. I told him I’d seen my friend’s chest and that I’d be fine with being like that. I foolishly thought [Ed. Stephanie was not wrong to trust her surgeon… her surgeon was wrong to so egregiously violate her trust, and the blame is squarely on his shoulders] that that would be the end of it. The last thing I said to him on my way to surgery was, “I trust you”. Other folks had told me he was an excellent surgeon.

Imagine my surprise when my bandages were taken off and I had a swollen, huge mess on my chest. They kept telling me it was just swelling and it would come down. Ha. Yeah. It’s taken a few weeks to really sink in just how abused I was. My other friends had their surgery, their ONE surgery and then could move on to healing. I’m a freak show and I WILL have another surgery and get the flat chest I asked for. I told him that he’d been worried about how I’d feel when I look in the mirror, but that what he DID to me was what was making me feel depressed when I looked in the mirror. He then reiterated the bit about how I’d be “glad to have that” if I “changed my mind”. I stressed that I do NOT want implants, but he just nodded and said condescendingly, “Well, women change their mind.”

I am outraged. I am outraged at the fact that hundreds of women are facing this abuse on a regular basis. I’m with you. We have to band together. I’ve written an Atlanta news station and I plan to write an editorial for a widely read paper in Athens. We must make a noise and try to expose this cruel, abusive practice.

NPoaS on the Today Show!

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Women’s health journalist and author of “FLAT: Reclaiming my body from breast cancer” Catherine Guthrie and Not Putting on a Shirt founder Kim Bowles were just featured on the Today Show this morning, talking to co-host Stephanie Gosk about paternalism and malpractice against mastectomy patients.

For those of you who have been victims of flat denial (your mastectomy surgeon(s) leaving you with extra tissue against your consent, after agreeing to make you flat, forcing you to undergo additional surgeries to fix what should have been done right the first time), I’m here to say:

You are not alone.  This is not your fault.

And I will continue to fight until this malpractice is addressed adequately and patients are protected.  The hardest part of breast cancer should be cancer. We don’t need an additional scoop of shit onto the shit sundae. Am I right?

Find out how to get involved at the “Support NPoaS” section of the menu here on this blog.  Our next public protest is coming up on October 23rd in Cleveland, OH (virtual participation is also an option)!  Registration is FREE.

Register now for the NPoaS Walk on Oct 23rd!

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You can now register here for Not Putting on a Shirt’s Walk on Oct 23rd (Tuesday).  Registration is easy and FREE!  This allows us to have an idea of how many people are planning to attend the event.  Unregistered walkers are also welcome to attend the Walk – we will make a registration sheet available on-site.

Walk participants will assemble in downtown Cleveland at the blue NPoaS registration tent at the center of Willard Park starting at 12:30pm EST.  At 1:00pm, we will start the Walk route, which is a short (under a mile) loop around Huntington Convention Center.  We will be staying on the sidewalk, just like we did on Sept 8th, exercising our First Amendment right to peaceably assemble.  We will traverse the loop twice and then meet back at the tent for refreshments.

How did we choose Oct 23rd?  Much like with an awful mastectomy result, someone else chose it for us…  Cleveland Clinic is holding their own event, an annual “Innovation Summit,” from Oct 22-24th.  It’s a good opportunity to make sure that we, the patients, are seen and heard by the people who hold the power in the medical community.    Not Putting on a Shirt will be there to demand that Cleveland Clinic – and the entire surgical establishment across the US and beyond – protect their patients from unethical surgeons who would inflict flat denial upon their patients.  It’s not too much to ask, folks!

Protest signs will be available at the registration tent in limited quantity, so feel free to bring your own.  Wear your Not Putting on a Shirt t-shirt (we have quite a few still available for purchase here!), or if you’re a survivor, you may join NPoaS founder Kim Bowles in shirtless protest.

 

Please be aware that there may be new media coverage of this event.

Stay tuned for more details.

Wanda – “This should be the norm!”

Editor: Wanda got a great flat result and was “one and done” (the initial flat closure was satisfactory).  Many women who choose to go flat, plan to get a tattoo across the mastectomy site (the canvas, so to speak) after healing from surgery – it’s a way to reclaim ownership of one’s body, and to heal emotionally through artistic expression.  For women who are victims of flat denial, our plans are crushed when we wake up to a ruined canvas.  Wanda lucked out with a skilled, ethical surgeon, and she got the result that every woman deserves – the result that she chose.  It shouldn’t be a matter of luck.

I was diagnosed with invasive breast cancer in 2016. Additionally, I had extensive pre-cancer throughout both breasts. I consulted two surgeons, and both agreed that without mastectomy I was a lock to recur.

When the surgeon first brought up mastectomy, she immediately said, “And you’ll reconstruct.” I was the one who had to say “No, I want to be flat so I can get a mermaid tattoo!” She said, “Ooooh, I want to see it!” I was very comfortable that she understood exactly what I wanted.

I consulted with a second surgeon, who concurred with the first surgeon’s opinion and also immediately brought up reconstruction. I said I didn’t want that. She said, “Tell me about that.” I explained that I wanted a mermaid tattoo. She seemed open to that, but I decided to go with the first surgeon.

I first saw my chest two days after surgery, when I was allowed to take a shower. I took the bandages off, looked, and my first thought was, “I look like a fucking badass!” It was flat! The mermaid would look great there.

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Wanda, flat & happy

I had to wait 18 months for the scar to heal enough to tattoo. I had no problems with healing and was back in the pool swimming 3 weeks after surgery. When I got my tattoo, the scar was white and flat. My tattoo artist did a fantastic job. I could not be happier. I had a full body skin scan a couple months after getting the tattoo. I told the nurse practitioner that I had had breast cancer and had a mermaid tattoo instead of breasts. When I showed her, she said, “That is amazing! Is it okay if I ask a colleague to come in and see this? She loves mermaids!” Her colleague came in and loved it. It was so gratifying to get that reaction to something that is so often seen as diminishing a woman.

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Wanda had planned her tattoo since she first learned she would require a mastectomy

 

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Wanda is Not Putting on a Shirt!

What is striking about my story is that so many people do not get this outcome. They are left with lumps, bumps, and extra skin that it would be incredibly difficult to tattoo on. They are met with resistance from the medical community about going flat. Surgeons insist they should have reconstruction, with its complications and multiple surgeries. I am grateful to have been so lucky to get the surgeon I did. This should be the norm!

Ed. Thank you, Wanda, for your support!