All in all, it’s just another brick in the road.

On February 12,  2020 I will be having Breast explant surgery.  This article explains what many women are going through right now. I think that it is what’s in my mind presently. It is not the actual surgery and how difficult the recovery will be. What I am feeling is grief.  Honestly, I never felt the pain that I’m feeling now knowing that I will not have any breasts any longer. When I had my mastectomy they also placed my implants in. I woke up having nice round perky breasts. Now those breasts are going to be gone. 

 *Update*   Six months have passed and I’m feeling better every day since having explant surgery.   It was a couple of challenging weeks at first, but every day is better than the last.  I’m really glad that I had the surgery, and I encourage other women to follow suit.  The toxic bags are gone and I have such a bright future.

 Ciao.  For now. 

 
 
 

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2019 was a watershed year for awareness about certain risks associated with breast implants: breast implant illness (BII) and breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). In this Special Report from Breastcancer.org, we have compiled the most important information you need to know about BII and BIA-ALCL, from risk factors, symptoms, and treatment, to the work of patients and advocates that led to product recalls and new safety recommendations from the FDA.

Robyn Towt was an active, energetic mom of two teenaged boys when she was diagnosed with breast cancer at the age of 44 and had a double mastectomy. At the time of her diagnosis, in 2017, she walked several miles a day for exercise and loved to go waterskiing with her sons near their home in Arizona. 

She opted for breast reconstruction with smooth-surfaced, silicone gel-filled implants, but as soon as she woke up from that surgery, she says, “I knew something wasn’t right.” In the days and weeks that followed, she developed mysterious, debilitating symptoms — migraines, extreme fatigue, insomnia, rashes, dizziness, hair loss, breathing problems, and burning pain in her chest, neck, and shoulder. 

“It got to the point where I couldn’t function and I was pretty much confined to lying on my couch,” says Towt. “I’ve had cancer three times in my life, and those breast implants [made me feel] worse than all of my cancers put together.” After learning from another woman in an online breast cancer support group that a reaction to her breast implants could be the cause of her symptoms, Towt decided to have her implants removed. She’d had the implants for 4 months, and all of her symptoms disappeared within a week of removing the implants. 

“I was shocked by how much better I felt once the implants were out,” she says. “And I wanted to tell the world because … if this happened to me, how many other women who’ve had breast cancer is this happening to?” 

Emerging risks of breast implants

Doctors often present breast reconstruction surgery as an important step that can help women move forward and feel more comfortable with their appearance after a mastectomy. And for many, it does — more than 60% of women choose to have some kind of reconstruction after mastectomy, and most report they are satisfied with the results.¹

Like any surgery, breast reconstruction procedures carry risks, and reconstruction with implants — the most common type of breast reconstruction — carries risks that some women who’ve undergone the procedure say they weren’t adequately warned about. 

The FDA has long advised women considering breast implants that they shouldn’t expect them to last a lifetime, and should assume they’ll need additional surgeries at some point because of well-known complications like capsular contracture (tightening of the capsule of scar tissue around the implant) and implant rupture. But there are also two serious risks that recently started to receive more attention from health authorities, doctors, and the media because of new research and because women who were affected are speaking out.

One is the condition Towt developed — breast implant illness (BII) — a cluster of symptoms such as fatigue, memory loss, and joint pain that can occur after getting breast implants, and that frequently improve after the removal of the implants (explantation). Many of the symptoms of BII are the same as those of autoimmune and connective tissue disorders, such as lupus and rheumatoid arthritis. However, only some people who have BII get diagnosed with a specific autoimmune or connective tissue disorder. BII isn’t well understood and isn’t officially recognized as a medical condition, but some experts say it’s likely to be related to an autoimmune reaction to the implants. 

The other serious risk is a rare form of T-cell lymphoma (cancer of the immune system) called breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) that develops in the scar tissue and fluid surrounding an implant. So far, all the confirmed cases of BIA-ALCL have been in women who had breast implants with a textured surface or whose implant surface type was not known. BIA-ALCL is curable in most patients if it’s diagnosed early and treated appropriately, but at least 33 women have died from the illness as of July 2019.²Some patient activists call BIA-ALCL a “man-made cancer” because it’s linked to a specific medical device and was identified for the first time in 1997. 

“Breast implant safety has become a very heated topic with a lot of unknowns and a lot at stake,” says Sophie Bartsich, M.D., F.A.C.S., a plastic surgeon and assistant clinical professor of surgery at NewYork-Presbyterian/Weill Cornell Medical Center. “It is good that there is more discussion happening, because people need to know about BII and BIA-ALCL, the differences between them, and the risk factors for each condition. Right now there is a lot of confusion and fear.”

Breast implant safety: A decades-long debate

Since the 1960s, implants have been used to restore the look and shape of the breasts after a mastectomy (reconstruction) and for cosmetic breast enlargement (augmentation). They’ve grown in popularity in recent years despite the fact that for decades there have been heated debates over their safety. In 2018, more than 101,000 breast reconstruction procedures were performed in the U.S., and 82% of them used implants. In addition, more than 313,000 breast implant surgeries were performed for cosmetic augmentation.³

Some breast cancer patients — more than 18,000 in 2018 — chose reconstruction using their own tissue (autologous reconstruction) rather than implants.³ Women who opt for autologous surgery tend to have higher long-term satisfaction with their reconstruction. But autologous surgery is less common because fewer plastic surgeons have experience with it, it’s a more complex surgery with a longer recovery time, and some women aren’t candidates, usually because they don’t have enough extra tissue. 

Plastic surgeons are supposed to carefully go over the risks and benefits of a reconstruction procedure, and the alternative treatment options, with a patient before the surgery takes place. Recently, a number of women who got breast reconstruction with implants have raised concerns about whether they received enough information from their doctors about newly emerging risks before they agreed to the surgery. 

Those who had breast cancer and later found out that their implants triggered a second illness say that the news can be devastating, and can cause them to lose faith in the medical system.

“It was a shock, and it is much harder to deal with than the original [breast cancer] diagnosis,” says Lory D’Addario, from Connecticut, who developed BIA-ALCL in 2017, 2 years after she had a double mastectomy and breast reconstruction. “You realize that this is something you put in your body to help you get your life back to normal only to find out you’ve developed a second cancer from an implant.”

Additionally, because BIA-ALCL is a relatively rare condition and both BIA-ALCL and BII are not always recognized by doctors, some women who developed BII or BIA-ALCL had difficulty getting the correct diagnosis and proper care. 

Roxane Vermeland, from Illinois, had an experience that she has since found is not unusual among women who have serious health problems related to their implants. She learned that her symptoms could be linked to BIA-ALCL, not from her doctors, but by doing her own research online. 

In 2018, she had significant swelling and pain around her left implant. She read that those are potential symptoms of BIA-ALCL on Facebook and asked her plastic surgeon if she could get tested for it. “He said to me, BIA-ALCL is so rare that you don’t need to be tested,” Vermeland recalls. “I had to insist and to advocate for myself.” The test came back positive.

Main risk factors for BIA-ALCL and breast implant illness

Breast implants have a silicone outer shell that can be either smooth or textured, and the main known risk factor for BIA-ALCL is having a textured implant.

The risk factors for BII aren’t as clear but are likely to include having a personal or family history of autoimmune conditions, allergies, and conditions such as irritable bowel syndrome, migraines, chronic fatigue, or fibromyalgia. 

Both smooth and textured implants are filled with either silicone gel or saline (salt water). Silicone gel-filled implants are the most common — in 2018, 88% of breast implants sold in the U.S. were silicone gel-filled.³ Much of the attention and research related to the question of whether breast implants can cause autoimmune symptoms or other health problems has centered on silicone gel-filled implants in

While more research is needed on whether implant fill type is linked to a higher risk of BII or BIA-ALCL, it’s important to know that both conditions have occurred in women who got silicone gel-filled or saline-filled implants for reconstruction or for cosmetic augmentation. A history of breast cancer also doesn’t, in itself, appear to increase the risk for BII or BIA-ALCL.

Click on the links below to learn more about each condition, including specific risk factors and possible causes, number of cases, diagnosis, treatment, and more.

Note: There is some confusion over the terms breast implant illness (BII) and breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). BII is not BIA-ALCL. They are completely separate.