Changing The “Assembly Line” Of Breast Reconstruction

I have a pretty obvious confession… I talk about myself… a lot.

Sometimes it can feel like a “bad habit…” but I think it’s a side effects of a lot of things… to start, I grew up a middle child, the only girl sandwiched in between brothers, desperate for someone to pay attention to me.

While some kids wanted to be an astronaut, a veterinarian or a doctor – I wanted to be the President of the United States because when he spoke – everyone listened. Then I grew up to become a motivational speaker who got to talk about herself for a living. I also competed in pageants, in which the primary skill is being able to convince others why you are the best woman for the job by – you guessed it – talking about yourself. After you win, then you travel your state… talking about yourself. After pageants, my mastectomy story went viral and there I went again… talking about myself.

But I’m not here to beat myself up, because even though it’s important to sit back, be quiet and listen sometimes, it’s also important to find your voice and I was lucky enough to find that at an early age. But as I’ve gotten older, I realized the value in truly being able to turn off the “self-focused” part of your brain and listen to other peoples’ stories, which you often miss when you’re really just waiting for your turn to talk.

A few days ago, I spoke with a woman named Jane. This conversation moved me… it changed my way of thinking… it was a conversation that I thought I had “shut up and just listened” to.

(Well… upon playing back the audio I was shocked to realize just how much I had interjected with my own stupid stories instead of listening… but hey… baby steps.) And, shockingly, I’ve now spent the first five minutes of this blog talking about myself. Now that that’s out of the way, back to the point of this blog: changing the way be address breast reconstruction. How’s that for a segway?!

I had the distinct pleasure of interviewing Jane about her experience with breast reconstruction… and boy is her story a doozy. Jane underwent four breast reconstructive surgeries… you read that right… FOUR. Jane was one of the rare, unlucky women who experience what is called “capsular contracture.” Normally, once a breast implant placed, scar tissue forms around it, creating a soft, unnoticeable tissue capsule which helps keep the implant in place. However, in some cases, a capsule forms that is hard and dense. The capsule tightens around and squeezes the implant which can cause chronic pain/distortion in the shape of the breast. Jane experienced capsular contracture three times.

Fed up and exhausted, she began looking for other options. Fortunately, women undergoing mastectomy and reconstruction have several choices. One of which is Autologous Reconstruction (AR). With AR, the breasts are reconstructed using a patient’s own tissue which can be sourced from various locations such as the thighs, stomach, back and buttocks. While there are several options for reconstruction, they are only beneficial if you are aware of them and if you can find a physician capable of performing them. Enter Stage Right: Jane’s rock-star physician, Dr. Constance Chen.

Dr. Chen recommended a type of AR reconstruction called a TUG flap, utilizing tissue from her upper thighs. Alongside her TUG flap procedure, Dr. Chen recommended a new surgical technique called Resensation®. Resensation allows the surgeon to reconnect the nerves that were previously cut during mastectomy. Jane shared with me that she as well many other women don’t realize that the nerves that provide sensation to the breast are also removed along with the rest of the breast tissue. When these nerves are cut, many women are left with partial to total loss of breast sensation.

(Want to learn more? Check out my post on loss of sensation here)

This can be devastating for women. Breasts are such an integral part of who we are and no longer having sensation can impact so many other facets of our lives (relationships, sexual intimacy, physical fitness, the ability to know if we’re having a nip slip…) For Jane, the loss of sensation even made her question her ability to be a complete mother. She recounted the devastation of knowing that she wouldn’t be able to feel her newborn child when she was placed on her chest after birth.

What’s worse is that very often women are not warned that this is a likely side effect of surgery. While the ability to recreate natural looking breasts has improved, it has been at the expense of a woman’s totality of experience with her breasts, which is seen as a secondary concern. Because physicians have become so skilled at making breasts look good, the process has become an assembly line of “pick your size, pick your shape and out the door you go.” What’s worse, is that women who undergo reconstruction after a cancer diagnosis, are often left with general sentiment of “well, you survived cancer… you don’t have the right to ask for more than that.”

This isn’t an OpEd, but its disheartening to be told daily by patients that their wishes were ignored by their doctors, their concerns weren’t taken seriously or their experiences lacked the compassion they deserved. It’s devastating to hear from a patient that they were only presented with one option for reconstruction without being informed of other techniques, either because a physician wasn’t aware themselves or didn’t specialize in that particular type of surgery.

Now there are incredible doctors out there, including Dr. Chen and my own surgical team of Dr. Eleni Tousimis and Dr. Mark Venturi. And having a good doctor, like a good teacher, can change the direction of your life. For Jane, after her TUG flap procedure with Resensation, she shared with me that she would be “hard pressed to know the difference” between the sensation that she now feels in her reconstructed breasts as compared to her original breasts. Jane’s life was forever changed because of a small surgical technique add-on and an additional 30 minutes in the OR. She has the ability to feel whole again because of the due diligence and compassion of her physician.

The loss of breasts impacts women in more ways than how our bodies are consumed by the outside world. Simply picking a size and shape and sending us on our way is putting a bandaid on a bullet hole. Many women have positive experiences with their reconstruction, myself included, but approaching women with a one-size-fits-all approach isn’t helping anyone. We need to do better. Women deserve better. It’s a doctor’s responsibility to 1. Be informed 2. Provide their patients with comprehensive information (including potential side effects and changes to their bodies) 3. Refer said patient to another physician if they are unable to skillfully perform the patient’s preferred surgery. Luckily for Jane, her doctor was a compassionate, forward-thinking physician who continued her education and provided that new skillset to her patient.

But because this is not always the case, I’ve created The Previvor – a website designed to do exactly that – put patients in the driver’s seat and give them the information to be their own best advocates (launching in October 2019). And I want to hear YOUR stories! So whether you had a wonderful experience with a great surgical team or you wish you had more options or you’re considering breast reconstruction, please share your journey below – you may just inspire another woman to take charge of her own healthcare!

Thanks for tuning in to another edition of All-in with Allyn! For daily updates and a behind the scenes look, you can follow me on Instagram @allynrose.