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.
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.
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.
“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.
Women Experience Pain
Imagine that and we don’t need to be gaslighted and told to shut up about it.
From Caroline Criado Perez
Contrary to how their medical practitioner made them feel for “making a fuss” women are in fact not wimps and nor are they freaks.
No, not every woman will experience pain during insertion of an IUD. But some women will experience extreme pain and trauma, and the answer to that experience is NEVER to tell them to shut up about it. The answer is (of course) to collect data on how many women are affected (which we are not currently doing, because of course), and then to analyse that data to figure out WHY these women are experiencing pain – is it because, as is the case for some women who experience extreme pain during a pap smear (I am thankfully not one of them, although it is more than “uncomfortable” ffs), the tools are too big and they need a smaller speculum? Is it a because of the “tilted cervix” that some women have that again can cause extreme pain during pap smears?
Is it because we shouldn’t be letting inexperienced practitioners stick metal spikey things up someone’s vagina while they’re awake? Yes, doctors need training. No women don’t need to be put through extreme pain to allow them to do it.
When women start to speak, other women join in, and eventually, there are too many of us shouting to be able to tell us to shut up anymore.
Following on from Caitlin Moran’s excellent piece that I linked to in last week’s newsletter, BBC 5 live picked up the story, with presenter Naga Munchetty talking about her own traumatic experience. And from there it spread like wildfire. It was covered by Grazia, it was covered in The Telegraph, it was covered on BBC Breakfast. The issue was addressed in the Health and Social Care Committee.
And then came the statements. Nadine Dorries, the women’s health minister, said that “no woman should suffer as a result of having an IUD or other scopes procedures,” and that she wanted to “use the Women’s Health Strategy to absolutely reverse this assumption that because you’re a woman and because you might have been through labour or because you’re going to go through labour, then therefore pain is a part of your existence.”
Dr Edward Morris, president at the Royal College of Obstetricians and Gynaecologists, called on “the UK government to ensure these experiences are recognised and addressed in the new Women’s Health Strategy for England.”
And perhaps most excitingly, Dr Diana Mansour, vice president of the Faculty of Sexual and Reproductive Healthcare said that the FSRH would "share updated clinical guidance on this matter.” (emphasis mine)
Now, of course, this is all early days. These are just words, and words are cheap. But they have been spoken, in public, and now we can make them stick to it. GFPs, women’s voices on this are being heard at the highest level of government. And it is HUGE that we are finally moving on from “shut up stop whining and stop scaring other women,” to actually LISTENING TO WOMEN WHEN WE SAY IT HURTS.
And remember, this ALL started with just one woman, who after going through a painful IUD insertion decided to ask other women if she was the only one. Never doubt the power of using your voice to speak to other women.
And also from CCP:
OF COURSE the time they manage to include women in a study is when it’s one that’s about making us more f**kable 🤪
Actually this isn’t surprising at all. People often ask me if there is any area of research where there is a gender data gap in favour of WOMEN, and I say, sure! Cosmetic treatments! When it comes to squeezing, stretching, pinning, cutting women’s bodies into remaining f**kable at all times, suddenly all the old canards – about how impossible women are to recruit, and how our niche menstrual cycle will interfere with the results rendering them unreadable for standard humans – go out the window.
As I reported in Invisible Women, “women represented 90% and 92% of participants in facial wrinkle correction trials and dental device trials, respectively.” Apparently we’re only too complicated when it comes to research that might save our lives.
From the Elephant Journal:
Ladies, let’s get serious about our sexual wellness and start loving on our “Lady Parts.”
Did you know that every vulva is as unique as a fingerprint. Every vagina is as singular as a snowflake?
When was the last time you grabbed a mirror and had a good, long look at your “lady parts”?
We're guessing probably never.
Getting better acquainted and cozy with your bits, in all their truly glorious diversity, is the first step to empowering ourselves and—an added bonus— enjoying ourselves sexually.
So, let’s say howdy to the hoo-hoo and celebrate the clitourethrovaginal complex! Read about 3 Lesser-Known Facts about the “V” that we all Need to Know.