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Frequently Asked Questions About Breast Implant Illness and BIA-ALCL

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Which symptoms could indicate a problem with my breast implants?
If you notice any of the following changes in a breast that was reconstructed with an implant, see a plastic surgeon or a breast cancer surgeon for evaluation:

  • pain
  • persistent swelling
  • a lump
  • increasing tightness or firmness
  • changes in the breast’s shape, size, or position

These may be signs that you’re developing a complication or an implant-related health condition.

What are the specific symptoms of breast implant-associated anaplastic large cell lymphoma (BIA-ALCL)?
BIA-ALCL is a rare type of T-cell lymphoma (cancer of the immune system) that can develop in and around the scar tissue capsule surrounding a breast implant. BIA-ALCL appears to occur either mainly or exclusively in people who have textured implants or had them in the past. The most common symptoms of BIA-ALCL are persistent swelling, pain, or a lump in the area of the breast implant. The symptoms typically develop 7-10 years after the initial implant surgery but can develop much earlier. It’s important to see your doctor promptly if you have symptoms of BIA-ALCL because finding the disease early can make it easier to treat.

What are the specific symptoms of breast implant illness (BII)?
BII can involve a wide range of symptoms that develop soon after the initial breast implant surgery or years later. BII impacts each individual in a unique way. Some of the potential symptoms are joint and muscle pain, chronic fatigue, memory and concentration problems, breathing problems, sleep disturbance, rashes and skin problems, anxiety, depression, headaches, and gastrointestinal problems.

Should I consider getting my breast implant(s) or tissue expander(s) removed even if I don’t have any concerning symptoms?
The FDA and other health authorities are not recommending the removal of Allergan Biocell textured implants or tissue expanders (the ones that were taken off the global market in July 2019 because they were found to increase the risk of developing BIA-ALCL) or any other types of implants in women who are not having symptoms. However, if you’re concerned about the risk of developing BIA-ALCL or other problems associated with breast implants, it’s worth talking about your individual situation and options with a board-certified plastic surgeon.

Some of the plastic surgeons we spoke with said that in general, they agree with the FDA’s advice about not removing implants that aren’t causing problems. Others said that in some cases they advise patients who are concerned to remove implants even if they have no symptoms.

For example, Sophie Bartsich, M.D., FACS, a plastic surgeon and assistant clinical professor of surgery at New York-Presbyterian/Weill Cornell Medical Center, says she often recommends removing silicone gel-filled implants that a patient has had for 12 years or more (because older implants are more likely to develop ruptures or other problems) and textured implants (because they are linked to a very small increased risk of developing BIA-ALCL). Since any surgery has some risks, you and your doctor need to weigh the risks and benefits of an operation to remove your implants. Some women choose to a switch to a different type of implant when the opportunity comes up because they are undergoing breast surgery for a separate reason.

If you have your implants removed for any reason, ask your doctors if they recommend sending samples from the scar tissue capsule and/or any fluid around the implant (if present) for pathological examination.

How can I find out which kind of breast implant(s) I have?
When you had breast implant surgery, your plastic surgeon may have given you a patient device identification card with information such as the manufacturer of the implant, the style, and the serial number (here’s an example). Check to see if you have this card. If not, you can contact the plastic surgeon who performed your surgery or the facility where your surgery took place to try to find this information.

Keep in mind that plastic surgeons say that it’s not uncommon to have difficulty determining which implant you have. The surgeon’s office or facility where you had the surgery may not have kept the records if the procedure occurred more than 7 years ago and they didn’t have electronic medical records at the time. Sometimes it’s not possible to find out which implants you have until your plastic surgeon removes them during a surgery.

If I have symptoms of breast implant illness (BII) and opt to get my implants removed, can I then get new implants? What might my other options be?
Breast implant illness (BII) isn’t well understood, and individual plastic surgeons take different approaches to treating it.

The plastic surgeons we spoke with who have treated a lot of patients with BII say they usually don’t recommend replacing your existing implants with new ones if you have BII symptoms (because of the risk that you’ll have an immune reaction to the new implants and develop symptoms again over time). They said that typically the best approach — and the one most likely to improve symptoms over the long-term — is to remove the implants and the surrounding scar tissue capsules and not get new implants. Some surgeons recommend an “en bloc capsulectomy” — removing the implant and capsule in one piece. In theory, this can help prevent materials like silicone or biofilm that are contained within the capsule from escaping into the body. Fully removing the scar tissue capsules may also lower the risk that fluid will collect in that area after the surgery (this is known as a seroma). Others may recommend a “total” (or “complete”) capsulectomy, which involves removing both the implant and the capsule, just not in one piece.

After that, depending on your individual situation and preferences, you might:

  • Decide against getting additional reconstructive procedures.
  • Opt for autologous (or “flap”) reconstruction, which involves transplanting flaps of tissue from another place on your body — such as your belly, buttocks, or thighs — to rebuild your breasts. With autologous reconstruction, you won’t have any of the risks associated with implants, such as rupture, capsular contracture, or breast implant illness. However, not everyone is a candidate for autologous reconstruction. And the surgery itself is more complex and takes longer to recover from than implant surgery.
  • Opt for fat grafting, which involves removing fat tissue from another part of your body, such as your thighs or belly, by liposuction. The tissue is then processed into liquid and injected into the breast area. Fat grafting can help even out indented areas and improve the contours of the breast area. If you might be wearing breast prosthetics, this can help them fit better. Fat grafting cannot be used to fully reconstruct a breast. It may be used as a treatment on its own sometime after you’ve had your implants removed, or it may be used sometime after autologous reconstruction. However, not everyone is a candidate for fat grafting.

I’m considering having my breast implants removed and “going flat” (not getting additional reconstruction). What do I need to know about getting the best results from that surgery?
Both for cosmetic reasons and for comfort, you’ll probably want your plastic surgeon to make your chest as smooth and flat as possible after removing your implants. Talk with your plastic surgeon before your implant removal surgery about what he or she can do to achieve the best results. This might involve, for instance, trimming excess skin (since the skin has probably stretched to accommodate the implants) and/or moving around tissue to fill in sunken areas. You may want to show your surgeon pictures of women who’ve had a mastectomy with no reconstruction with results you like. Also, you might choose to look for a plastic surgeon who has produced good results for other patients who chose to go flat.

If I’m trying to decide if I want to get breast implants for the first time or replace my current implants with new ones. Are there any risk factors for developing breast implant illness that I should know about?
Doctors who have treated many patients with breast implant illness say that they’ve seen that it is more likely to occur in people who have a personal or family history of autoimmune conditions, allergies, and conditions such as irritable bowel syndrome, migraines, chronic fatigue, or fibromyalgia. But some women who develop BII don’t have any of these risk factors.

Which factors might put me at a higher risk for developing BIA-ALCL?
If you’ve ever had saline-filled or silicone gel-filled breast implants with a textured surface, you have a slightly higher risk of developing BIA-ALCL than if you’ve had only smooth-surfaced implants. It is possible that tissue expanders with a textured surface may increase the risk of developing BIA-ALCL, but information on this risk is currently limited.

Out of the cases of BIA-ALCL in which the manufacturer of the implant was known (as of July 2019), 90.5% involved Allergan Biocell textured implants, 7.1% involved Mentor textured implants, and 1% involved Sientra textured implants.1

Currently, there are no confirmed cases of BIA-ALCL in women who only ever had smooth implants.

Researchers have also identified certain genetic mutations that seem to increase the risk of developing BIA-ALCL (in particular, mutations in the JAK1 and STAT3 genes). In the future, it may be possible to use a combination of genetic testing and HLA testing (a blood test that checks for antibodies against human leukocyte antigens, which play important roles in the immune system) to determine whether an individual has an increased risk of developing BIA-ALCL.

How can I find a plastic surgeon who is knowledgeable about treating BII and/or experienced in removing breast implants?
Here are some tips on selecting a surgeon:

  • First, don’t automatically assume that the plastic surgeon who performed your original (or most recent) implant surgery is the one you should choose to remove your implants or consult about breast implant illness. Plastic surgeons vary widely in their level of skill, the types of procedures they can perform, and how much experience they have treating BII or other implant-related conditions.
  • Check to make sure that any surgeon you are considering is board-certified. There are many surgeons out there practicing plastic surgery who are not certified.
  • If you’re looking for a new surgeon, one way to find recommendations and reviews is through the online support groups that are focused on implant-related health problems.
  • When you meet with a plastic surgeon for an initial consultation, make sure he or she takes your concerns seriously and takes the time to talk through the risks and benefits of any procedure or treatment approach you’re considering. The surgeon should also have a plan in place to follow up with you over time and see how you’re doing after a procedure.
  • Some plastic surgeons recommend “en bloc capsulectomy” (removing the breast implant and the capsule of scar tissue surrounding it in one piece) for patients who have BII symptoms because, among other reasons, it might prevent materials like biofilm on the implant or leaked silicone that is contained within the capsule from escaping into the body. Others may recommend a “total” (or “complete”) capsulectomy, which involves removing both the implant and the capsule, just not in one piece. Ask each surgeon you’re considering about the implant removal approach he or she would recommend in your individual situation.
  • Since many parts of the country lack plastic surgeons with expertise in treating BII, you may decide to travel to another city or state to find the right surgeon. Check with your health insurance provider to see if your medical expenses will be covered. Health insurance plans usually don’t cover travel costs.

If I’ve been diagnosed with BIA-ALCL (or suspect I may have it), should I try to seek care from a medical team that has experience with this rare cancer?
Since BIA-ALCL is so rare and was only recognized fairly recently (in 2016) as a unique form of lymphoma by the World Health Organization, not many physicians have experience diagnosing or treating it. Depending on your individual situation and where you live, it may in some cases be worth traveling to seek care from a medical team at a large academic medical center that has experience treating BIA-ALCL — such as at MD Anderson Cancer Center or Memorial Sloan Kettering Cancer Center. Another option might be to get a remote/virtual second opinion from a specialist at a major medical center without making an in-person visit. The specialist would review all of your test results and other information to compile a report of recommendations about your care, which would be sent to you and/or your current doctor. Doctors should be aware of and should follow the National Comprehensive Cancer Network’s diagnosis and treatment guidelines for BIA-ALCL, which were first established in 2016 and are updated annually.

If I’ve been diagnosed with BIA-ALCL and I get my implants removed, can I then get new (smooth) implants or other reconstructive procedures?
This would depend a lot on your individual situation. Treatment for BIA-ALCL involves an “en bloc capsulectomy” (surgery in which the implant and surrounding tissue capsule is removed in one piece). Some patients have also required radiation therapy, chemotherapy, and/or stem cell transplant therapy. If you’re being treated for BIA-ALCL, your doctors may recommend that you wait for a certain period of time after the removal of your implants or until you’ve completed other therapies before getting another reconstructive procedure. Some of the women who have been treated for BIA-ALCL have undergone additional reconstruction with smooth implants, autologous flaps, and/or fat grafting. Many chose not to undergo additional reconstruction.

I’m having trouble getting my health insurance to cover the removal of my implants, diagnostic testing, or treatment for BIA-ALCL, or other care related to problems with my implants. Where can I turn for help?
It may help to know what insurance companies are legally required to cover. There’s a federal law — the Women’s Health and Cancer Rights Act of 1998 — that requires health insurance companies to pay for breast reconstruction surgeries if they pay for mastectomies. This includes covering all stages of reconstruction and treatment of any complications that result from a mastectomy or reconstruction. Some states also have their own laws requiring health plans that cover mastectomies to cover breast reconstruction. This means that if you’ve had a mastectomy in the past and you have private health insurance, in most cases follow-up surgeries related to your breast implants (including implant removal) should be covered. Medicare covers surgeries related to breast reconstruction, while Medicaid coverage varies from state to state.

Whichever type of insurance you have, you and your surgeon will have to make the case to the insurance company that the surgery is medically necessary for it to be covered.

If you want to get your implants removed because of BII symptoms, keep in mind that currently there is no diagnosis code for BII. Plastic surgeons typically list problems such as pain, implant rupture, tightening of the scar tissue capsule, and shortness of breath to make the case to the insurance company that surgery to remove the implants is medically necessary. They can’t just list BII as the reason.

Here are some resources to look into related to insurance and financial help:

  • The U.S. Department of Labor has a PDF with detailed information about the Women’s Health and Cancer Rights Act.
  • The National Center for Health Research has a program offering free assistance to women who are trying to get their insurance to cover breast implant removal or who lack insurance and need to find an affordable policy that may cover breast implant removal.

    Fill out the Help With Insurance Coverage for Breast Implant Removal form to request their help. Also, the Private Insurance page on the Center’s site has a step-by-step guide to filing an insurance claim for breast implant removal surgery.
  • The BIA-ALCL Patient Assistance Fund offers grants to help pay for the costs of treating BIA-ALCL in patients who are uninsured or underinsured. The patient’s plastic surgeon should complete the online application and must be a member of the American Society for Aesthetic Plastic Surgery, The American Society of Plastic Surgeons, the Aesthetic Surgery Education and Research Foundation, or the Plastic Surgery Foundation to be considered for a grant.
  • Also, whichever type of implant(s) you have or potential complications you’re concerned about, check to find out what might be covered under the manufacturer’s warranty that was in effect for your implant(s) at the time of your surgery. Some warranties cover, for example, out-of-pocket costs for implant removal surgery if you are diagnosed with BIA-ALCL and out-of-pocket fees toward diagnostic testing for BIA-ALCL. But keep in mind that to take advantage of the warranty, your surgeon may have to return your explanted implant(s) to the manufacturer and you may have to sign a form called a liability waiver, which says you agree to give up your right to sue the manufacturer in the future. These forms are also called by other names that usually include some combination of the words “liability,” “waiver,” or “release.”

How can I report problems I’m having with my breast implants to the FDA?
Consumers and health professionals can report problems with medical devices to the FDA using the online MedWatch Voluntary Reporting Form or by calling 1-800-FDA-1088.

Where can I connect with other people who are interested in health conditions linked to breast implants and find support?
There are a number of very active online communities devoted to helping people with implant-related health problems, such as:

Read more of this Breastcancer.org Special Report on breast implant illness and BIA-ALCL, and please take our brief survey to share your feedback.

Reference

  1. Clemens M. BIA-ALCL Resources. American Society of Plastic Surgeons. August 2019. Available at: https://www.plasticsurgery.org/for-medical-professionals/health-policy/bia-alcl-physician-resources/by-the-numbers

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