When a person is diagnosed with breast cancer, she (or he, or they) will often look to books to find out what others have gone through, what the experience will be, how to cope. But Catherine Guthrie wasn’t able to find what she was looking for.
“I read everything I could get my hands on,” she said. “And while there were a lot of breast cancer memoirs out there, a lot of them were women’s stories about how their diagnosis impacted their husbands and their children. And that’s an important niche, for sure, but it didn’t reflect my life, and I couldn’t find a book where a woman was really grappling with the reality of this disease and the pressure to reconstruct.”
Out of her need for a story that fit her own life she wrote it herself. “FLAT: Reclaiming My Body from Breast Cancer” is her memoir of her ordeal with breast cancer.
Guthrie, a freelance women’s health journalist, is a Louisville native who now lives in Boston with her long-time partner, Mary. She will do a reading at Carmichael’s Bookstore, 2720 Frankfort Ave., at 7 p.m. on Thursday, Oct. 25.
While the book chronicles Guthrie’s life and experiences with breast cancer, the real story is that Guthrie chose not to reconstruct after her double mastectomy and the pressure that she experienced to “look normal.”
About one in eight women (12.4 percent) will develop invasive breast cancer in her lifetime, according to Breastcancer.org. About one in 1,000 men will develop it. In 2018, an estimated 266,120 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 63,960 new cases of non-invasive (in situ) breast cancer. A study in 2014 study found that about 56 percent of women had reconstruction after mastectomy.
Lumpectomy vs. mastectomy
When she first visited a plastic surgeon to discuss her options, she was under the impression she’d have a lumpectomy. The doctor told her she was not a candidate because of the size of her breasts and the location of the tumor. “A lumpectomy would decimate your breast,” the doctor said.
Then came a frightening proposition.
“He said, ‘so here’s what we’re going to do. We’re going to give you a mastectomy and then we’re going to cut this back muscle and we’re going to tunnel it around under your arm. We’re going to cut it and we’re going to leave part of it attached to your back … and we’re going to lay it over an implant.’ I could picture in my mind a steak laid over a tennis ball. I’m like, ‘You’re going to do what?’ ‘Then we’re just going to sew it all up, and it’s going be fine.’ and I was like, ‘What are you talking about?’ ”
She then asked the doctor, isn’t that muscle doing something? “He just waved his hand at me and goes, ‘You know most women hardly miss it.’”
His reasoning: “You want to look normal in clothes, right?”
She went home, did her research and learned that the procedure is called the Lat Flap, which, when complete, makes a “breast-shaped mound.” As a yoga instructor, she didn’t want to possibly lose some strength in her back, as well as complicate other back issues she’s had her whole life, including scoliosis.
“He just acted like this was the most normal thing ever,” Guthrie said. “Of course, I would do this because, as he put it, I wanted to look normal in clothes didn’t I? So that begs the question, who am I doing this for? This is clearly about other people, clearly about strangers on the street because when I undress in front of my partner at night and get into bed, that’s not fooling anybody.”
Her struggle to find the right doctor started with an office bedecked in pink — pink carpet, pink curtains, pink lab coats and even a gift bag full of pink tchotchkes. There was another surgeon who bristled when asked how many breast cancer surgeries he does.
Then came the decision about whether to go to a hospital in a rural town in Indiana known for its homophobia and proximity to the home of the Ku Klux Klan or to make the drive to Indianapolis from their then home in Bloomington.
After all her research, she finally decided to have a double mastectomy and “go flat.”
She’s been involved in several Facebook groups for women with breast cancer who have chosen to go flat, and the response to her book has been overwhelming.
“I started seeing pictures of people with the book and they were taking pictures of my book next to their flat chest,” Guthrie said. It was so sweet. I was getting pictures sent to me and posted online where there was my book cover next to a woman’s scarred chest and she was just saying ‘thank you,’ you know? ‘Thank you for speaking up. Thank you for saying what I’ve been thinking. Thank you for making my choice something that I can feel proud about. And be seen.’ And there’s a visibility there that my book is given to an entire community.”
Some other procedures can have severe complications and can take an average seven surgeries to complete, Guthrie said. The DIEP Flap surgery includes taking belly fat and using it to reconstruct a breast. But the surgery requires a large cut to the abdomen and a very painful recovery.
“Why are we not telling women this information?” Guthrie said. “Because plastic surgeons, they want to be the ‘happy doctor,’ is what they tell me. ‘I want to be the doctor that the breast cancer patient is happy to see. I want to give her good news.’ That’s infantilizing. Lets not treat women like children. She’s going to find out when she goes and tries to sit up after surgery and passes out from the pain. That’s something really good to know beforehand.”
Life after cancer
Guthrie is now NED, which means her body shows “no evidence of cancer,” she said. She doesn’t like to say “cancer free” because nobody really knows if they are cancer free. Her type of breast cancer is notorious for spreading into other parts of the body and showing up again years later, so she stays realistic about her prognosis.
She sees her oncologist once a year, and the doctor palpates her chest.
“There’s no more mammograms for me,” she said. “There are no good tests, no blood tests, no imaging tests that can detect a recurrence.”
And while many want to say that she won her battle, and everything is fine now, she doesn’t say that because she doesn’t want to sugarcoat life with breast cancer. Though she doesn’t enjoy being a downer, she wants people to understand the reality.
“This is what’s real, and this is what I’m living with, so would you just sit with it with me for a minute because that’s what we want, you know as friends, for the people that we love,” she said. “You know not just brush it aside with a kind of trite response or smile. We really do want to show up to each other and we have to give each other opportunity to show up and invite that person in.”
Writing the book has been a way to invite in other people who have endured the struggle of breast cancer and the decision of whether to reconstruct or not.
“It’s just so fulfilling as a writer to see my story connect with people who have otherwise felt that they didn’t have a voice or weren’t being seen. And that’s really all you can hope for as a writer, right? That people really connect with your story.”