2 Survivors Share Lessons They've Learned
- Be very clear with your surgical oncologist and your plastic surgeon about exactly what you want.
- Prepare for pushback if you take an unconventional route.
- Decisions related to breast reconstruction are very personal and will vary from one woman to another.
Like breast cancer treatment, breast reconstruction after mastectomy whether to do it, how and when is a unique journey and a very personal decision for each woman that faces it. Two women share with SurvivorNet their unique journeys and wisdom for other women.
A Fast Return to Function
When Reed learned she had breast cancer in 2003, she was as committed to her decision to live flat as she had been when breast cancer was just a hypothetical idea. "They did their job, which was to feed my kids, and now they were trying to kill me, so I no longer had any need for my breasts," she said.
"They did their job, which was to feed my kids, and now they were trying to kill me, so I no longer had any need for my breasts.” – Kathy Reed
As for appearances, Reed says that was never a concern. "Whether or not a person is attractive to me is based on their character, and that's how I want other people to look at me as well." She adds, "I am a function over form kind of person. I choose everything clothes, furniture based on comfort, not how they look."
By opting out of breast reconstruction, Reed could get back to her regular functions, one of which was being a mother of two. To her, reconstruction meant more surgery and downtime than she had already endured to treat the cancer in the first place.
Make Wishes Clear But Prepare for Pushback
While Reed had no doubts about her decision, others weren't so sure. She wasn't surprised when she got unwelcome comments from her mother-in-law. But she was taken aback when her surgical oncologist didn't trust her decision. Reed made clear to the surgeon that she didn't plan to do breast reconstruction then, or ever. In fact, prior to surgery, she handed him a written statement, explaining her decision, to show she had thought it through and she was sure. But, after the double mastectomy, she wasn't perfectly smooth and flat as she had expected to be. There was some loose tissue "two fat lumps" as she describes them left behind on her ribcage.
When she asked the surgeon why he hadn't taken that tissue, "He said, 'I left those because it'll make it easier if you change your mind later and decide you want reconstruction. It'll look smoother,'" she recalls him saying.
In fact, up to one in ten women who clearly ask to go flat are left with unnecessary and unsightly tissue. The patient-advocacy organization ‘Not Putting on a Shirt’ advises women to ask specifically for "an aesthetic flat closure as defined by the National Cancer Institute." Women may also show their surgeon pictures of flat-living women whose shape and scars they find acceptable. These pictures can be found at BreastFree.org and NotPuttingOnAShirt.org.
Reed never went back to have the tissue removed. "That would have been an extra surgery, which is exactly what I was trying to avoid." And now, 16 years later, she occasionally wakes from dreams where she has breasts, but she never wishes she had them in real life.
An Unclear Road Ahead
When Chantel Purcell began her breast cancer treatment, in 2018 at age 49, she didn't know what her plan for reconstruction, if any, would be. She had aggressive stage 2 triple-negative breast cancer. First, she'd have chemotherapy, then a mastectomy, then radiation.
She knew that if and when she had breast reconstruction, she would have to have implants. Purcell is slender and didn't have enough extra tissue for surgeons to use fat from another part of her body to reconstruct her breasts. This meant reconstruction would have to wait until after she finished radiation. Radiating breast implants can be risky. Up to 4 in 10 women who have radiation after implant surgery have complications, including infection, hematoma, or the formation of scar tissue around the implant that can cause pain and deform the implant.
Heading into cancer treatment without knowing whether she would ever have breasts again, Purcell tells SurvivorNet, "was a hard place to get to mentally, but I had to put cancer first. I had to focus on saving my life."
Deciding not to even think about reconstruction until she was through the cancer, "I asked the surgeon to close me up as clean, flat and smooth as she possibly could."
It all happened, she said, "at a head-spinning pace. First, you're diagnosed, then you're losing your hair and your lashes, then suddenly you're having your breasts amputated. So it didn't hit me that hard till after the surgery."
Learning to Live Flat
Purcell says her goal after surgery was to embrace her new body. She hadn't decided yet whether she would undergo reconstruction. She just wanted to recover and learn to live with her new body as it was. She experimented with clothes that would disguise her flat chest. She wore ruffles and loose fitting garments. She tried jewelry that would draw the eye in another direction. "I made the most of the challenge and decided that I was going to be bigger than this," she says. "And I think I pulled it off."
“I didn't want to go out into the working world looking like a cancer patient. I didn't want them to look at me with pity in their eyes." - Chantel Purcell
But then Purcell went back to work. In her work as a real estate broker, Purcell meets strangers every day. "Oddly, I didn't want them to know," she says. She went to great lengths to look "normal" to those strangers.
"I was wearing wigs and bras with prosthetics that weigh like six pounds. It was summer and it was hot. All of it was so incredibly uncomfortable," she recalls. "But, I didn't want to go out into the working world looking like a cancer patient. I didn't want them to look at me with pity in their eyes."
She constantly struggled to keep her clothes adjusted so that everything stayed in place, but sometimes things slipped. "Then I just wanted to cry because I was trying so hard to be normal."
The Long Road to Reconstruction
Purcell decided to start the process for breast reconstruction. It's not an easy one. Besides the flat closure after her mastectomy, radiation had further tightened and thickened her skin. So, her first surgery was to implant tissue expanders.
Since her chest was concave rather than flat, and she had no extra skin there, the surgeon had to take muscle and skin from her back. That meant that Purcell had a major back surgery to recover from as well. The muscle from her back would provide a little extra volume and cushion in Purcell's chest before the tissue expanders went in.
Tissue expanders are like breast implants, except there are access ports outside the body that allow a health care provide to add saline to the expander every couple of weeks. This continues until the skin expands enough to exchange the expanders for permanent implants. It’s a painful, months-long process.
Through the pain, Purcell says, "I literally watched my body transform. It was incredible. It wasn't just the aesthetic. It was the way I was starting to feel. I was feeling normal and whole again."
On her regular visits to the surgeon's office for more saline, Purcell talked to the health care providers about her expectations. She had done tons of research and knew what type of implants she expected the surgeon to use and what she expected the final results to be.
The surgeon explained to Purcell that he'd go into the operating room with several different implants and choose the right size for her body. But, several days after the surgery, when Purcell removed the bandages, "I was devastated," she said.
Her breasts were small, flat and hard. They looked masculine and more like pecs than the breasts she had expected. The surgeon had used implants that were far smaller than what she had anticipated.
But, though she had talked at length with the providers who managed her tissue expansion, she says, "I just didn't have the right conversations with my surgeon."
Purcell is now in the process of scheduling a second surgery to get the results she had expected originally. For women embarking on breast reconstruction, her advice is to do research, talk to other women who have been through it, and communicate your expectations clearly to your surgeon.
"I want everyone to know this because if I can prevent any one person from experiencing what I’ve experienced, that would be my goal."