She chose to "stay flat" and wants other breast cancer survivors to know that they too can

Catherine Guthrie already knew a lot about breast cancer when she discovered a mass on her left breast at 38 years old.

A journalist on women's health, Guthrie wrote about the experiences of breast cancer patients and followed the latest innovations in treatment. But all of this research would not have been able to prepare her to live with breast cancer – and the choices she'd have to make about her body.

In her memoir, FLAT: Recovering My Body After Breast Cancer, Guthrie recounts her fight against breast cancer. his relationship with his partner, Mary; and his sometimes frustrating interactions with the medical system, especially male surgeons.

FLAT (Skyhorse Publishing) recounts Guthrie's journey to feel good in her body after undergoing a double mastectomy and choosing not to have reconstructive breast surgery.

About 25% of patients who had a double mastectomy chose to stay flat after surgery, and 50% of patients who had a mastectomy also chose to stay. "That's a lot of women," says Guthrie, choosing flat breasts instead of reconstructed breasts.

She told us about her surgeon's big mistake, how she decided not to move, and why some doctors refuse to accept it when women make that decision.

This interview has been modified for its length and clarity.

Highlights of the interview

Your doctor has made a pretty serious mistake, requiring you to undergo a second operation right after your double mastectomy in 2009. What went wrong?

I went back to my surgeon a week later to have the drains [which channel fluid from the surgical site] removed. He removed the drains, and reflexively I reached out to feel where the bump had been in my chest. I just wanted to make sure he was gone.

So I raise my hand and my fingers rest on the hump. I do not have breasts and yet I have the same size in the same place as before the operation. And I look at my surgeon and I say, "There is a mass here, and I feel it, it's not OK."

He looks at me and says "Oh, I'm sure it's nothing, do not worry about it." I said to myself, "I'm worried about it now and I need you to feel it. I do not leave your office today with a bump in the same place as [where] My cancer was "It acted like," What a pain in the ass that you are right now, and this is supposed to be your happy time without cancer and you ruin it. "

The surgeon agreed to send me down for a mammogram and things went on from there to show that it was actually the exact same bump – that he had missed .

What did this experience teach you about the power dynamics in physician-patient relationships?

It sort of reaffirmed how I felt from the beginning. When you are the patient and sitting in a paper towel and talking to a surgeon, the imbalance of strength is very strong. It does not matter who you are. I think that as a woman speaking to a surgeon, the imbalance of strength is greater because of our cultural attitudes towards gender. Then ask the surgeon to show disdain and silence my worry by saying, "Oh, you become hysterical."

There is also a long history of women being treated with disdain by the medical establishment. And it's one thing to know that this is happening as a feminist and as a woman writing about these issues, but it's another to physically live that experience and defend yourself. This led me to write the book, and it inspired me to speak publicly to patients and doctors about these issues.

How did you make the decision not to have a restorative surgery? Was it difficult to make that choice?

It is always very difficult to choose to amputate a part of your body. When I found the mass for the first time, I thought, "Okay, I'll probably have a lumpectomy and radiation. As a health reporter, I knew it was my least invasive option and that she had a very good track record. Because my body was high on my chest and my chest was small, [I wasn’t] a candidate for lumpectomy. [My surgeon] said it would decimate my chest, there would be nothing left.

He immediately shifted and said, "Do not worry, here's what we're going to do: we're going to do a single mastectomy and we're going to rebuild your breasts by cutting the biggest muscle in your body." a flap of this muscle, leaving one end connected to the blood supply in the back, then wrapping the other end under the arm until it reaches the front of the body. the cavity where we have just removed all the breast tissue, then put that muscle on the breast implant, and it will be your new breast. "

Sensational. It seems invasive. How did you understand that?

I was stunned. I looked at him and asked, "Is not this muscle doing something?" He just waved his hand like, "Oh, most women never miss it." And I thought to myself, "Ha, it's hard to imagine because it's the biggest muscle in the back." At that time, I knew I would miss it. I am a very active person, I was only 38 years old at the time, I was a yoga teacher.

So, this idea that we do not need the strength of our body, nor the strength, because what is more important than the force, as it is presented to the world as breasts, bothers me a lot .

And it was assumed that I would much prefer to look "normal" in clothes, that it would be my priority before feeling strong and confident in my body. Thus, the only people for whom this reconstructed breast would be intended would be foreigners. And that 's why I was going to sacrifice my strength, so it did not make sense for me to follow that path.

And once you made that decision, did your doctors support you?

I was lucky because my surgeon accepted this choice. I did not have a lot of backflow from the surgeon. I think the hurdle for me and for many women is that the choice to take a flat flat was not presented to me. I had to come up with this idea myself. When I returned home after the conversation with the plastic surgeon, my mind was boiling and I wondered, "How can I escape the options that he has proposed?" I am a strong advocate for surgeons offering to choose from the start the options they offer to women.

You said that some women did not want to be respected by their doctors. How's it going?

Recently, maybe a year or two ago, I learned that women were asking their surgeons to lay them flat and that during surgery, the surgeons would change their minds. While the woman was under anesthesia, the surgeon decided on his own, I will leave a little extra skin in case this woman would change in the opinion. Thus, patients with breast cancer wake up after surgery with excess skin after asking for a flattening. The skin sags and sag – for many women, it's like having two empty pillowcases on the chest.

This is discussed all the time in the online forums. I spoke to eight women, while telling another story. That this happens regularly is an abomination, it is a violation. And that says a lot about the culture of paternalism and protectionism that certainly exists in the medical system today, and especially among surgeons. In the end, they do not trust women to make good decisions about their bodies.

When this happens, do women usually use extra surgery?

It is not an easy task to have to come back for another surgery. And most insurance companies are fighting to pay for a review. The average breast reconstruction requires several surgeries, and this is no problem. But if the surgeon spoils your mastectomy and leaves more skin, and you ask for a revision, women are told that cosmetic surgery is not covered.

So are more women going flat these days?

There is no evidence that the trend is the reverse in itself. In fact, the number of women who benefit from reconstruction has steadily increased for many reasons, including Obamacare, [which] allowed many more women to have insurance coverage. I always say that I am not anti-reconstruction; I am pro-information. I just want people to have good information.

But what's interesting is that what happens with flat visibility, especially in the media, is that you see more. There are incredible things happening. People like Tig Notaro being flat and taking off his shirt during a comedy routine, it was a really important gesture.

I'm not sure everyone appreciates this comparison, but because I'm weird, I compare it to the closet. More and more women see a flat visibility represented in the media. And I think it makes women feel brave. They feel like, "Oh wow, look what she's doing … She's out, she's flat, she's daring."

Women enter flat groups on Facebook where every Friday, we talk about "flat and fabulous Friday". People display their outfits for the day and show how they rock. And there is so much support, enthusiasm and enthusiasm to really encourage these women to come to the world and embrace their bodies.

Rachel D. Cohen is an intern at NPR's Science Desk. [Copyright 2018 NPR]