"They’re Called Boobs, Ed."
Advocate Robyn Towt Shares The Truth About Breast Implants, "None of my doctors told me any of the true risks.” Find Out How She's Working To Change That.
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Yes, you may remember the famous line from the movie, but today we’re talking about a serious problem that’s been going on for years and talking with one of the women who is standing up for patients’ right to know the whole story about implants.
Each year, about 300,000 U.S. women get breast implants, but women have been fighting for decades to set the record straight about the risks and side effects associated with them. They want women to get the right information they need to make an informed decision about this medical procedure.
Robyn Towt is a mom, a former teacher, a breast cancer survivor, and more specifically a three-time cancer survivor.
In 2017, she was diagnosed with breast cancer. At the time, she had two teenage boys and she was diagnosed right as she was looking forward to spending one of the last summers with her children before college. She wanted the easiest route to get her life back and recover, so she chose to have a double mastectomy and reconstruction with silicone breast implants and tissue expanders.
“I had an entire team of doctors on my side helping me through my decision process,” Robyn recalled. “I initially didn’t want reconstruction surgery because I didn’t want to go through multiple surgeries, but they made it sound totally easy and safe, FDA-approved. So, I did it. None of my doctors told me any of the true risks—not my oncologist, my plastic surgeon, or my breast surgeon.”
Robyn’s breast cancer journey is unique in that she chose not to have chemotherapy and was not allowed to have any more radiation (because of her previous cancer treatments), so she elected for surgery only.
“After surgery, my health spiraled downward out of control,” she said. “I was really confused.”
She started connecting with other breast cancer patients in online support groups, and they were having some of the same issues as her, but they thought it was from chemotherapy.
“I didn’t understand why it felt like I had chemo when I didn’t,” she said.
Her health issues after surgery included everything from heart palpitations and anxiety to chronic migraines, chronic pain, burning sensations, difficulty breathing, and severe insomnia. Plus, her hair and eyelashes were falling out.
“I wasn’t able to sleep so I would be in these chatrooms at 2 a.m. talking to women all over the world,” she said.
One Woman’s Story Can Help Another
A woman in her hometown eventually helped her get to the bottom of her health issues. She reached out to her online and said, “Look into your breast implants.”
“This woman had a boob job for 12 years and for eight of those years she was really sick—in the last three years she was bedridden,” Robyn said.
She had Googled everything she could, while seeing specialists but every test came back inconclusive. The doctors could not figure out what was wrong with her. They thought she had MS or a brain tumor, but her labs came back clear, her allergy tests came back clear, her scans were clear. She was struggling and suffering and didn’t know why.
It wasn’t until she saw an interview with Crystal Hefner (widow and third wife of Playboy publisher Hugh Hefner) that something shifted. Crystal talked about how her breast implants made her sick with all these debilitating health issues. Robyn’s friend decided to get her implants removed, and she started to feel better.
“That was the story that saved her life, which ultimately saved my life because she told me her story,” Robyn said. “When she started naming her symptoms, and so many of mine were the same, I knew what I needed to do.”
Regaining Her Health & Becoming An Advocate
Robyn made the decision to remove her implants after only four months, and she’s felt amazing ever since (it’s been almost four years now).
“That’s what led me to my advocacy work,” she said. “I had heard all the stories and took them with a grain of salt, as there are hundreds of thousands of women who were super sick and then they took out their implants and got better.”
She felt angry that none of her doctors had warned her about these risks and she wondered how many other breast cancer patients it was happening too.
“I made it my mission to advocate for patients and let people know the truth,” she said. “This is my story and this is what happened to me.”
She bumped up against quite a bit of resistance when she began her advocacy work in 2017, which was before the FDA acknowledged that breast implant illness was a real thing. You can see what they say about it now here.
But she gained strength from connecting with a larger group of women, who had been working on this issue and trying to get the FDA to listen for years.
She’s since testified twice at the FDA in Washington D.C. alongside her breast cancer sisters and others who have been sickened by their implants. She has acted as an administrator for several online support groups and co-founded the Breast Implant Safety Alliance (BISA) and Global Patient Advocacy Coalition (GPAC).
Her first meeting with the FDA was in September 2018, when 20 women testified. That meeting led to a two-day hearing in D.C. in 2019, which she attended with about 80 other women, who also testified as well as researchers and scientists.
See Robyn above testifying in March 2019 about the impact of her breast implants on her health and the need for change in the industry.
Their advocacy contributed to greater awareness and the worldwide recall of Allergen textured breast implants and textured breast tissue expanders from the market.
In September 2020, the FDA announced a black box warning for all breast implants—silicone, saline, textured, or smooth. It’s the strongest warning the FDA puts because it means that a product carries the risk of serious injury or death.
The updated warning came as a response to the health risks associated with breast implants, including breast implant-associated anaplastic large cell lymphoma (BIA-ALCL), along with breast implant illness.
A 2020 study published in the Annals of Plastic Surgery showed that removing breast implants relieved those symptoms for patients who had previously had breast implant surgery and developed breast implant illness. (Anyone remember this plot line in Rebel?)
“We've been consistently working and collaborating with the FDA to come up with solutions on how we can better inform patients, on how we can hold doctors and surgeons accountable, and how we can hold the manufacturers accountable,” Robyn said.
Acting Locally & Globally
Robyn didn’t stop there. Changes at the federal level can be slow and it’s easy to encounter a lot of gridlock, so she started working locally in her state to make changes.
She lives in Arizona and went to the state capital to meet with a few senators and tell them her story, bringing other breast implant illness advocates with her.
“We actually got a law passed here for informed consent and it will mandate surgeons in the state of Arizona to give patient materials from the manufacturer that we're supposed to have,” she said.
The law will also mandate them to give patients a check list that she and other advocates worked to create with the help of the Arizona Society of Plastic Surgeons, the American Medical Association, the Arizona Medical Board, the Arizona Society of Osteopaths, as well as patient advocate groups and senators.
The law goes into effect in January 2022.
“We want to make sure that women are told about the cancer caused by implants,” Robyn shared. “We want to make sure that women are told about breast implant illness and that the FDA has acknowledged a list of symptoms that are associated with breast implants, but there's still a huge communication gap in the medical community.”
She and others are working on legislation in other states too. Plus, she and advocate Terri Diaz formed GPAC, a global patient coalition, to talk with advocates in other countries and compare notes throughout the world.
“We realized that a lot of us are experiencing the same communication gaps in the medical community,” she said. “For instance, in Europe MHRA, which is their regulatory agency, is actually doing some great things to educate the medical community about this issue. So we want to tap into that. How are they getting this information out to their medical professionals? Another example is TGA in Australia. They have a breast implant registry and over ninety percent of their surgeons that perform breast implant surgery are registering patients into this database so that they can track and follow their health and any adverse event symptoms.”
We have a breast implant registry in the U.S. called the National Breast Implant Registry (NBIR). Our plastic surgeons performed almost 300,000 breast surgeries in 2019, and they only registered 2,900 patients.
“That to me is horrific because the FDA has been well aware of these problems and that women have been sick from implants for more than 60 years,” she said. “We should have at least 90 percent or more of surgeons following patients to track these symptoms.”
But don’t worry, Robyn and other advocates are not stopping anytime soon.
“There’s so much work to be done,” she said. “I don’t want to discredit the milestones and the huge great strides in our advocacy and awareness, but of course it’s not enough.”
One of the issues she and others are still working on is asking the FDA to put out a healthcare provider letter, informing the medical community and physicians of all specialties about these issues.
“We’re doing a pretty good job getting this info to the plastic surgery community,” she said. “But where the information is lacking currently is rheumatologists, cardiologists, and neurologists. They are seeing our patients all the time and if they don’t know that breast implants can cause these issues, how are they going to help their patients?”
On Becoming An Advocate
I asked Robyn what gave her the fortitude to take on this fight.
“I'll be 100% honest with you,” she said. “I had no clue what I was doing. None. I've never been involved in government. I've not been involved in legislation. I would do my civil duty and vote, but that was about it. I never saw myself here, ever.
As a mom, a cancer survivor, as a woman, and as a member of society, I saw this drastic wrongdoing and such a large scale of deception. I did think, what can one person do?
Most of my reasons started with anger and frustration at the system and how it failed me. I couldn’t help but think, how many more women is it failing? I needed a place to channel that anger. The unfairness of it all was a driving force because these are innocent victims that were lied to and deceived.
Here’s the thing: I don't have a problem with women making an educated choice if they want to choose to have breast implants, whether it's for augmentation purposes or for breast reconstruction. After having breast cancer and a double mastectomy, however, I have a huge problem if they're making those decisions based on false information or lack of information.
I wanted to fix what I wasn’t told. How could I make it so that women know what I didn’t know?
I didn't know how to start doing state legislation, but I took a leap. I jumped right in. I met with a senator and said, ‘this is a problem I have. I don't know if this is in your jurisdiction or how to fix it, but let's chat,’ and then we took it from there. I was actually shocked at how much power the states have to pass legislation for issues like this one.
It's been frustrating for a lot of these women who have been fighting for so long because they feel like they're talking to a brick wall and no one's listening because the federal government is so big and powerful. The FDA is so big and powerful. The manufacturers are so big, powerful, and untouchable. It's it just seems like an unattainable goal.
But then you go talk to your local legislations. These people are public servants that live in our neighborhoods, and they've put themselves on the line to help their constituents in their state, and their region, and their district.
I sat down and talked with them as a human being, and shared my story. They were floored because none of them knew; they had no idea. Once they knew they're like us, they say, we have to do something about this.
It was a learning experience for me to do my first bill here in Arizona. I won't lie, it was daunting. But once we did it here in Arizona, I thought why not do it in other states as well?
I was very lucky that I healed enough and recovered my health enough to be able to do this work. We have a lot of ladies that are still so sick.
I look at everything as an experience and what I can get out of it. I will say, as horrible as it was that I got poisoned by my breast implants, I’ve met some amazing women and I’ve been able to do things I never in a million years would have done. I’m just a former teacher, stay-at-home mom from a little farming community in Arizona. If I can do it, anybody can.”
Know someone impacted by this issue? Check out more resources from the Breast Implant Safety Alliance here. Inspired by Robyn’s story? Let her know in the comments below.