Roxane Vermeland thought she’d been through the worst of it when, after being diagnosed with breast cancer in 2013, she had a double mastectomy, 23 lymph nodes removed and six rounds of chemotherapy … all of which led to a positive outcome.
But little did the Yorkville woman know when she underwent reconstructive surgery in the fall of that same year the textured silicone breast implants she received would lead to another form of cancer, one so relatively unknown, she believes she’s the first in Illinois to be diagnosed with it.
The cancer is called Breast Implant Associated-Anaplastic Large Cell Lymphoma — a type of non-Hodgkin’s lymphoma found in the scar tissue and fluid near the implant and can spread throughout the body.
In the past few months since receiving this diagnosis from both Mayo Clinic and MD Anderson Cancer Center in Houston, the 57-year-old former medical secretary has become such an advocate for getting the word out about the disease and the dangers of implants that, on March 26, she was among 65 women from all over the country to testify at the first Breast Implant Hearing in front of the Food and Drug Administration in Washington, D.C.
According to recent news reports, many women across the country who blame breast implants for making them chronically sick and fatigued are calling on the FDA to take action. In addition to implants causing autoimmune diseases, nearly 600 cases, including 19 deaths, of confirmed BIA-ALCL have also been reported worldwide, most involving textured implants, noted Dr. Mark W. Clemens, associate professor of plastic surgery at MD Anderson and a leading expert on the disease who spoke at the same meeting.
Doctors like Clemens are joining these woman in demanding the FDA ban the textured implants, as do 38 other countries, and that manufacturers and the medical profession begin to aggressively promote awareness so women will be armed with adequate information about the dangers of implants before they agree to the procedure.
“We went there to tell our stories and to fight for informed consent,” Vermeland said of the group that formed on Facebook and is gathering steam as more women come forward. “We want to know what risks we are taking when we get implants so we can make the best decision about our health going forward.”
Vermeland’s emotional testimony — her story included two years of misdiagnosis which eventually left her in intensive care for a week — received a standing ovation from many in the audience, which only buoyed her confidence she’s doing the right thing by speaking out so publicly.
She says the medical profession and implant manufacturers have been aware of this “man-made blood cancer” since 2011. But according to the FDA, because there were so few cases identified, it was not until 2016 the World Health Organization designated BIA-ALCL as a T-cell lymphoma that can develop following breast implants.
With BIA-ALCL, fluid builds up with persistent swelling or pain around the implant, and lumps can develop, as was the case with Vermeland, who first noticed symptoms months after her reconstructive surgery.
“Basically, your body is sending white blood cells to attack the implant because it thinks there is something that needs to be rid of,” she said. “And when they can’t get rid of it, your body sends more cells, which mutate into cancer and travel into the nodes.”
According to the FDA, more information about the disease is being collected and evaluated. Yet Vermeland insists the medical professionals she worked with locally and in Chicago knew little about it and either ignored or downplayed her symptoms that also included itching, joint and muscle pain, chronic fatigue and migraines.
“Why do I, as a patient, have to give my doctors information on how to treat me?” she asked.
Like Vermeland, Rachel LaRue, who also lives in Yorkville, says she nearly died from breast implant disease that, over the last couple of years, became dramatically more serious. (Both women, who live just a few miles apart in Yorkville, did not know of each other but plan to meet soon).
Although LaRue did not develop BIA-ALCL, she said she struggled with dozens of autoimmune symptoms — rashes, lesions, lumps, swollen lymph nodes, fatigue, blurred vision, staph infections, hair loss, muscle aches — that for years also went misdiagnosed by doctors.
Bed-ridden, riddled with pain and suicidal at one point, LaRue, who had a career as a multi-media personality when she began getting ill, said what complicated her situation was lack of funds to undergo the “ex-plant.”
But once the implants were taken out in February, she said, “it was like night and day” as her symptoms subsided. And LaRue too is on an aggressive campaign to bring more awareness to other women. Not only did she create several Facebook pages, she also formed the The Midwest Chapter of Breast Implant Illness.
While LaRue’s health has dramatically improved, Vermeland still faces uncertainty. Now seeking treatment at both MD Anderson and Mayo, last summer she had surgery to remove the second implant — the first had been taken out after she became septic. Having already undergone what she described as “a life-time max” of chemo after her double mastectomy, Vermeland opted for a procedure that froze the affected lymph nodes … and prayed for positive results.
Because her recent biopsy came back “inconclusive,” Vermeland said she’ll be making another trip to Houston in a few weeks for a PET scan and to meet with her medical team, which includes Clemens.
If the test results show cancer growth, Vermeland knows more chemotherapy and radiation may be her only option. But despite this ominous cloud hanging over her, she won’t slow down her efforts for more awareness and transparency. Nor will LaRue, who is working with a documentary team to shed even more light on the issue.
“When you’ve been through something like this,” she said, “you can’t just stop the movement.”
As a result of the recent hearing, the FDA agreed more efforts were needed to inform patients about risks. What those steps are — pamphlets, black box warnings or a ban on certain implants — remains to be seen.
The good news, both women agree, is that as word begins to spread, medical professionals are taking notice. According to an email response from Rush Copley Medical Center, “textured implants are currently not in use” at the Aurora hospital.
Rush Copley went on to say, “we encourage all women to evaluate the benefits, risks and potential complications associated with breast implant surgery and to discuss these matters with their physician.”
But in order to discuss it, these women insist, you have to be given the right information.
“It was a sad thing that when I was so sick,” said Vermeland, “I had to travel out of state or on Facebook to get the answers I needed.”