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Although implant-associated ALCL is extremely rare, the FDA believes that women with breast implants may have a very small but increased risk of developing this disease in the tissue capsule the body forms around an implant over time. ALCL may also be found in the lymph nodes and the skin.
At this time, data appears to indicate that the incidence of ALCL is very low, even in breast implant patients and is estimated to be between 1 in 70,000 to 1 in 500,000. Currently, it is not possible to identify a type of breast implant (silicone, saline or polyurethane) or a reason for the implant (reconstruction versus aesthetic augmentation) that is associated with a smaller or greater risk.
Overall, lymphomas of any type that occur in the breast are rare, accounting for only 1% to 2% of all non-Hodgkin's lymphomas. Most breast lymphomas have a B-cell phenotype. However, implant-associated ALCL has a T-cell phenotype.
Implant-associated ALCL tends to remain confined around the breast implant. Most patients have a good prognosis when they receive the appropriate treatment.
Because other diseases and cancers of the breast can cause similar symptoms, implant-associated ALCL is often a difficult diagnosis. Symptoms can vary from person to person.
More common symptoms include:
- A spontaneous fluid collection in the breast, developing many months or years after receiving a breast implant
- Redness and swelling of the breast around an implant that is not from an infection
Less common symptoms:
- Contraction of the scar tissue capsule surrounding the breast implant
If you have one or more of these symptoms, it does not mean you have implant-associated ALCL. However, it is important to discuss any symptoms with your doctor since they may indicate other health problems.
The symptoms of implant-associated ALCL often are the same as more common diseases of the breast. which can make ALCL hard to diagnose. Early and precise diagnosis is important to successful ALCL treatment. However, doctors often are unsure if a person has ALCL, even after capsule fluid has been removed and tested.
If you have a fluid collection or unexplained swelling many months or years after receiving a breast implant, try to see a doctor who has experience in ALCL. If you have been diagnosed with implant-associated ALCL, it is important that a doctor experienced in ALCL reviews your tests.
Because doctors at MD Anderson focus on ALCL and have experience with the disease, they are among the most skilled and experienced in the nation.
Implant-Associated ALCL Diagnostic Tests
If you have symptoms that may signal implant-associated ALCL, your doctor will examine you and ask you questions about your health, lifestyle, and your history and type of breast implants and breast surgeries. One or more of the following tests may be used to find out if you have implant-associated ALCL and if you have lymph node involvement. These tests also may be used to find out if treatment is working.
- Needle biopsy or drainage of capsule fluid
- Imaging tests, which may include:
- PET-CT (positron emission tomography) or CAT (computed axial tomography) scans
- MRI (magnetic resonance imaging) scans
MD Anderson offers pioneering treatments for implant-associated ALCL, some of which are available at only a few cancer centers in the nation. When we treat ALCL, we also focus on breast reconstruction, restoration, and quality of life. To do this, we draw upon ALCL treatments that may include specialized and less-invasive surgical methods.
Doctors often suggest a clinical trial (research study), some of which are available only at MD Anderson. This usually is performed with surgery alone but may include radiation therapy, chemotherapy and targeted agents.
MD Anderson offers more targeted therapies than many cancer centers. In fact, we are among the leading research sites discovering treatments for implant-associated ALCL.
If you have ALCL around a breast implant, your doctor will discuss the best treatment options with you. The type of treatment depends on several things, including:
- Type of ALCL
- Stage of the disease
- Location of the cancer
- Your age and general health
Your treatment for implant-associated ALCL will be tailored to your needs. Your doctor may suggest one or more of the therapies below to treat the cancer or help relieve symptoms.
The main goals of surgery for implant-associated ALCL are to remove the cancer and any inciting antigen that may be present stimulating the cancer to increase the chance for successful treatment.
In many patients, surgical treatment alone is sufficient to treat implant-associated ALCL. Additional therapy, such as radiation and chemotherapy or targeted agents, may be used in cancers that are more difficult to treat.
Types of surgery for implant-associated ALCL used at MD Anderson:
Implant removal with total capsulectomy (IRTC) is considered the best chance of complete tumor removal. IRTC includes removal of the tissue capsule that surrounds the breast implant, where lymphoma cells may be found.
Lymph node dissection (LND) involves removing involved lymph nodes that are suspicious, or are found to have ALCL cells.
In rare cases, radiation therapy may be combined with surgery, if surgery alone is not expected to fully treat the disease. When given after surgery, radiation may reduce the chance of the cancer coming back in patients with advanced disease.
In rare cases, some patients may receive chemotherapy in addition to surgical treatment to treat advanced or aggressive disease.
MD Anderson offers the most up-to-date and advanced chemotherapy options for ALCL. Our dedicated lymphoma medical oncologists have significant expertise in the management of chemotherapy. A team of nurses, physician assistants, pharmacists, social workers and physicians who specialize in lymphoma provide comprehensive care for patients who receive chemotherapy.
Why choose MD Anderson for your implant-associated anaplastic large cell lymphoma treatment?
You can be sure you are being cared for by renowned physicians with the highest levels of experience and skill.
A team of more than 30 medical oncologists, plastic and oncologic surgeons, radiation oncologists and pathologists – all experts in their fields and ALCL – work together closely to customize the best treatment for you. A specially trained support team is part of each group.
MD Anderson researchers are pioneering remarkable advances to give you the best treatment for implant-associated ALCL. Areas of study include:
- More-precise ways to diagnose implant-associated ALCL
- Radiation and chemotherapy clinical trials for advanced disease
- Novel targeted agents that help your body fight the disease
We constantly test new boundaries with research. Because of this, we can offer many clinical trials (research studies) of new treatments that are not available at other centers. In fact, the dedicated implant-associated ALCL research program at MD Anderson is one of few in the world.
And, at MD Anderson you're surrounded by the strength of one of the nation's foremost comprehensive cancer centers. We have all the support and wellness services needed to treat the whole person – not just the disease.
Being diagnosed with breast cancer at 33 is unusual enough, but Raylene Hollrah was also diagnosed with an extremely rare type of lymphoma just a few years after her first cancer diagnosis and before her 40th birthday.
Raylene, an outgoing insurance advisor who prefers to be called Ray,
is only the 25th person in the U.S. -- and the 61st in the world -- to
be diagnosed with breast implant-associated anaplastic large cell
lymphoma (ALCL). It's a diagnosis that has changed her life in many
"I always say cancer is like breaking a window," she says. "You've got shattered glass everywhere; you've got to clean up the mess and try to figure out how to fix it."
A breast cancer diagnosis -- and cause for breast implants
The discovery of a lump in her breast during an annual physical in 2007 launched Ray on a roller coaster ride that has tested her strength and spirit. After a negative mammogram and ultrasound, a needle biopsy came back positive for breast cancer.
Even though she had a single lump in just one breast, Ray underwent a double mastectomy in April 2007, followed by a round of chemotherapy.
"It was my choice," she says. "I was 33 with no
cancer history whatsoever."
Ray still remembers how she felt when removing the bandages for the first time after the mastectomy.
"I was in the shower and burst into tears," she says. "My husband Jayson told me 'Don't cry. The only thing missing is cancer.'"
Ray underwent genetic testing four months after her mastectomy, only to discover that she carries the BRCA2 gene, which increases her risk for breast cancer and ovarian cancer. In April 2008, she was back in surgery, getting a hysterectomy as a cautionary measure.
After two surgeries, Ray was not emotionally ready for breast reconstruction.
"When cancer enters your life, it's hard to think forward, because all of a sudden, cancer is right in your face," she says. "Death and mortality are right there."
However, life without breasts was hard. Ray couldn't look at herself in the mirror, and she detested the heavy prosthetic breasts that kept her from wearing flattering clothing. She decided to get cohesive silicone breast implants in 2008.
Afterwards, Ray finally felt normal again. She focused on her family and -- together with her daughter, Alyson, and her husband, Jay -- welcomed into her home an adopted son, Ryan, a 14-year-old who was forced into foster care after his mother died of cancer and his stepfather received his own cancer diagnosis.
"I had my little family, my house and picket fence," Ray says. "Life was good."
Ray's breast implant-associated anaplastic large cell lymphoma diagnosis
But in 2013, Ray started experiencing more problems. Her right breast swelled up and quickly doubled in size.
Her plastic surgeon, an expert on ALCL, decided to test Ray for both breast cancer and ALCL -- a decision that may have saved her life.
"If I had a doctor who didn't know about implant associated ALCL, I most likely would have been treated for breast cancer and wouldn't have gotten better," Ray says. "How many other women had gone through the same ordeal?'
With the guidance of her plastic surgeon, Ray began researching ALCL, but it wasn't easy given how rare the disease is. She found that many women with the disease had been misdiagnosed with and treated for breast cancer.
But when she learned that MD Anderson had seen a majority of the
ALCL cases in the U.S., she says, "It was a no-brainer. I was
going to MD Anderson." Not only had MD Anderson seen the majority
of U.S. ALCL patients; MD Anderson's Roberto Miranda, M.D., had authored a study
following the long-term treatment and care of 60 ALCL patients
At MD Anderson, Ray received ALCL treatment from Mark Clemens, M.D., and Michelle Fanale, M.D., associate professor of Cancer Medicine. Dr. Clemens removed Ray's breast implants, and fortunately, no follow-up chemotherapy was needed.
"I had the best team of doctors. Dr. Clemens and Dr. Fanale and the rest of my team are incredible," Ray says. "I am Raylene Hollrah to them, not a statistic, they truly care about my survival and not only that, they care about future women that might have to go through this."
Raising awareness about breast implant-associated ALCL
Ray is again without breasts, and still struggles with her self-image.
"It still pisses me off when I take my clothes off," she says. "I don't look like a woman anymore. But is it important for me to rise up and help people? Yes! It's my badge of courage."
In January 2011, the Food and Drug Administration issued an official warning about the risk of ALCL associated with breast implants. Since then, Ray has begun a passionate crusade to raise awareness for other women with breast implants.
She started a blog, warning women about the risk of ALCL, rare though it is. She has told her story on television shows and in magazines and held a fun run that raised $11,000 for research.
Ray is quick to say that she's not telling women to get their breast implants removed or trying to change others' minds about getting implants.
"I just want to make sure that women who have late-onset breast
swelling get tested for this," she says. "Knowledge is