I was born with a congenital defect of small, tuberous breasts.  In 2004, when I was 32 years old, I made a decision to get saline breast implants.  I  had always been self-conscious of the way I looked, especially in swimwear, since I was a teen.

The breast implants did wonders for my self-esteem and made me feel that my breasts were more normal.  I was told that it was advisable to get them removed in 8-10 years, if I was experiencing any problems, but that some women are able to keep them for a life-time.

Fast forward 3 years and I am pregnant with my third child  (only pregnancy with implants) and I had so many issues with my pregnancy….morning
sickness all day long for 4 months straight, issues with urinary retention that my doctors could not explain.  After having my child and feeling like I just couldn’t bounce back with my energy level, I had a physical.  I was told I had an enlarged thyroid and might have rheumatoid arthritis.  I was sent to an endocrinologist and a rheumatologist.  They told me I had Hashimoto’s and possibly the beginnings of arthritis.  After several years of being on thyroid meds with no improvement, I took myself off.  By that time, my hair was falling out, I was low in iron, I had no energy, I had strange rashes on my scalp and neck, I was gaining weight, I was freezing cold all the time, my vision got worse, and I had trouble concentrating (brain fog).

In 2013, I began having severe cramp-like sharp pains under my left breast that would literally take my breath away.  Two different doctors told me it was probably just scar tissue from my surgery.  I really just gave up trying to figure out what was wrong with me.
In 2016, one week after a mammogram, I began having severe pain in my right jaw and right side of neck.  I went to the chiropractor for 3 months, who could not help me but suggested I might have TMJ (jaw joint) disorder.  I also went to an orthodontist, who confirmed that I did not have TMJ.  I saw an article on Facebook about Hugh Hefner’s wife having implants removed because they were causing health issues and she referenced a Facebook group she had joined about Breast Implant Illness.  I wondered if the mammogram had caused a leak in my implants.  I immediately checked out the Facebook page and had a light bulb moment — literally thousands of women were experiencing the same exact symptoms as myself!  I spent the next 3 months having consultations and getting my insurance to approve this surgery, which was pretty easy once I was diagnosed with Grade III capsular contracture and severe pain which was documented on my medical record by 2 doctors.  Insurance did deny covering implant removal the first time, but with the encouragement of the National Center for Health Research, I tried again– my surgeon appealed for me and coverage was approved the second time.

I am pleased to report that 3 weeks post-surgery, 90% of neck and jaw pain is gone, my hair has stopped falling out, I’ve lost 10 lbs without trying, and the brain fog is almost gone.  The surgeon told me that the pain I was having was where the capsule had become adhered to my chest wall.  I am still having a lot of soreness/pain in the area he had to cut and scrape more.  But getting my implants removed was the best decision I ever made.  My worst decision was getting them in the first place.  My body apparently has been fighting these foreign objects for at least 10 of the 12 years that I had them, causing a major autoimmune response.

   In 1998, I made a decision that changed my life forever: to get breast implants. It wasn’t anyone’s decision but mine. I was a confident young woman, but I guess felt like my femininity was lacking due to my AA breasts. Hindsight sure changes our perspectives, though.

    My Dallas plastic surgeon chose textured, saline implants above the muscle. The surgery went great and it was definitely a confidence booster for me. I liked the way that they looked.

    My husband and I had our first son in 2000. I had some difficulty breastfeeding. Shortly after birth, I noticed that my breasts looked weird. After some research, I realized that I had developed symmastia. This is sometimes referred to as “breadloafing” or “uniboob”. So, I went back to my original surgeon. He wasn’t concerned, saying that my breasts look similar to his wife’s. This wasn’t reassuring. I consulted with another Dallas plastic surgeon. He said that surgery to fix the problem would cost $7500.  I knew that would have to wait.

    In early 2002, I was diagnosed with hypothyroidism and given medication. I then became pregnant with our second son. I again had difficulty breastfeeding. He was healthy when he was born, but two weeks later he was hospitalized, endured a spinal tap, developed hypoxia (lack of oxygen), and failure to thrive. He was hospitalized several times during his first few years and diagnosed with immune dysfunction. If weird things could develop, it would happen to him.

    Over the next few years, my health declined. I began to develop fatigue, swollen lymph nodes, and a low grade fever. I was employed as a paramedic in an emergency room so I attributed my symptoms to job exposure. I knew that I didn’t feel good but I didn’t really know what was going on. Most lab tests were normal. I was treated for chronic sinus infections. My anxiety worsened and brain fog began. My home life suffered because I couldn’t keep things organized. It was a big mess. I was eventually diagnosed with ADD and treated for that and depression.

    I left my ER job to work at a pediatric clinic.  I was still sick. I had surgery in 2009 surgery to try and correct my sinus problems, but they continued.  In 2010, I began to have very painful nodules in my neck and chest. I was diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease. I also was diagnosed with CMV (Cytomegalovirus) and Chronic EBV (Epstein-Barr). They are both very common but my body just didn’t seem to fight them off. The combination of chronic viruses and autoimmune illness resulted in a diagnosis of Chronic Fatigue Syndrome.

    I quit my job.  At some point we could no longer afford insurance so I couldn’t even try to solve my medical problems.  My fatigue was ridiculous. I was way too young to feel the way that I did.

Over time, the implants decreased in size. In March of 2012, I woke up to find that my left implant had ruptured. I was completely distraught and embarrassed, but we weren’t in any financial shape to have them replaced.  For three years I made my breasts look even by inserting a silicone insert into my bra. The implant slowly leaked more and more. My husband said it didn’t bother him but it was very awkward for me. I couldn’t act appealing when I didn’t feel that way. Intimacy suffered. It was horrible to know that I was causing that much distress to my husband and marriage but didn’t have an answer to fix it.

        As a former paramedic, I looked for answers in medical journals and scientific publications and realized that my implants could be making me sick. I found a Dallas Explant surgeon, Dr. Edward Melmed, who no longer performs breast augmentation surgeries because he has seen too many sick women. He has now performed approximately 5,000 breast implant removal surgeries. He would eventually be the surgeon to remove my toxic bags.

    While saving money for explant, my life was chaotic. I couldn’t think straight or keep organized. My patience was very thin. My family life suffered. It took everything in my power just to get up and perform basic duties. My body felt like it was in a constant battle with itself. I needed to see specialists but didn’t have insurance and I couldn’t afford it. I felt like a complete failure. I had failed myself and my family.

    In August of 2015, Dr. Melmed removed my 17-year-old PIP implants and my capsules. It was a new beginning.

    I never tell any woman that all of their symptoms are from their implants. They most likely aren’t. I never tell any woman that explant is the answer to all of their problems. It isn’t. But, many of my unexplained symptoms went away immediately. The migraines, the low grade fever, the swollen lymph nodes, the arm and hand numbness, the brain fog – GONE. The burning sensation in my left breast after rupture – GONE. I still have viral illness I battle. I still have autoimmune Hashimoto’s. My health overall has greatly improved, though. My patience is better. My libido is better. The fatigue is still a battle but it is improved. I am able to interact with my children more. I was able to care for my papaw in the last year of his life.

And, I became an advocate.

• I started a public Facebook group called Pursuing Explantation. This is where I first shared my journey and where I now share all of the publications I come across. It has videos and photos that the public can view.
• I’ve joined forces with two fantastic women who have been diagnosed with breast implant-associated lymphoma (ALCL), and created a Facebook group for women to learn more about it. We work closely with Dr. Suzanne Turner, pathologist at the University of Cambridge, and with Dr. Mark Clemens, at MD Anderson in Houston. They have both been extremely helpful in helping us to advocate and to educate ourselves and the public on this rare disease.
• I’ve joined with several other women to create an informal group called Breast Implant Victim Advocacy. We have joined forces with device victims, such as women harmed by Essure, to raise awareness about the larger picture. People are being harmed by medical devices because they aren’t help to the same safety standards as other medical products.
• I’m a member of the new USA Patient Network and working with Consumer Union’s Safe Patient Project, to help raise awareness and to be a stronger advocate for safer medical products.

The same stories have been told by women with breast implants for more than two decades and their voices are not being heard. Many women have led the way for us. Social media helps today’s women combine their efforts to raise awareness. We need to be heard. Laws need to change. Surgeons and physicians need more awareness and more accountability. Patients need to be taken more seriously. The media needs to publicize these issues more. Momentum is building. Please help share our stories. If you are a victim and haven’t told your story, please do. Every story makes an impact.

I am Raylene Hollrah, a 2-time cancer survivor by the age of 40. Here is my story.

In March 2013, I was living a wonderful life.  I was the mother of a beautiful three- year-old little girl named Allyson.  I was a loving wife, a successful business owner, and I was heavily involved in my community.   I had no idea my life as I knew it was about to drastically change.

I was at an appointment to start the fertility process again for another child, when my OB/GYN suggested doing a clinical breast exam.  My doctor felt a lump during the exam and ordered a mammogram immediately, followed by ultrasound. Then a breast surgeon did a biopsy.   When I saw the look in my surgeon’s eye and her demeanor changed, I knew that I had been dealt the card of breast cancer.

I was 33-years-old and no family history of cancer. On April 20, 2007 I chose to undergo a bilateral mastectomy without reconstruction, followed by a summer full of chemo. I lost all my hair, I lost my chest, but I never lost faith. My oncology group was incredible and my medical team was amazing. They were there to take care of me physically and mentally. My 3-year old daughter used to tell me, “Mommy, please take off your hair and show everybody your beautiful bald head.”  My amazing husband knew just what to tell me and has been an inspiration ever since. He took one look at my chest and said, “The only thing I see missing … is cancer.”

Reconstruction was constantly on my mind — I was 34- years-old and I had lost my female identity.  I went to 3 plastic surgeons trying to find answers, trying to find out if I wanted to move forward and what my options were. All 3 doctors agreed that implants would be the way to go.  I chose Allergan cohesive silicone implants, I was also part of a study to follow patients that received those implants for 3 years.  In 2008 I started my reconstruction journey.

I had been doing everything to keep cancer away, I didn’t realize my next decision would lead to my next diagnosis.

The next several years went smoothly. Jayson and I welcomed Ryan, our next child, into our lives. Ryan had lost his mother to cancer when he was 5 and around age 12 was informed that his step-father had cancer as well. He had been moved into foster care, but we officially became guardians in 2012.

Life stayed normal for a while, but one day I noticed that one of my implants was slightly swollen. As the days went by, it became exponentially worse.  My chest tripled in size in 4 days.  After a CT scan at my local hospital I was advised to go to my plastic surgeon’s office immediately. After testing and draining, he assured me that I did not have cancer but suggested that my right implant needed to be removed and replaced.

On my 40th birthday I underwent an implant exchange. My plastic surgeon told me while in surgery he have a pathologist check for breast cancer and a very rare lymphoma.  I wasn’t worried since the previous test had said I was fine.

On June 21st, 2013 my plastic surgeon told me I had Anaplastic Large Cell Lymphoma, ALCL. I was the 25th documented case in the US and 61st in the world.

The days following were a blur, an immediate trip to Houston, TX to MD Anderson Cancer Center. Because of the rarity at the time of this diagnosis they were one of the leading hospitals with knowledge of this rare cancer.

The next 5 months of my life were mainly spent in Houston.  The first line of treatment was the complete removal of the implants and second bi-lateral mastectomy. It was to be followed by CHOP chemotherapy and then radiation, but when they realized that the cancer was contained in the scar tissue and capsule, they said there was no need for additional treatment.

For the past 3 years I have been traveling to Houston for cancer scans. My health has been good.

When I was diagnosed with breast implant associated ALCL, I was told the condition happened to 1 in 3,000,000 women, but it soon became clear from talking to my medical team at MD Anderson that this disease was being under diagnosed. Just three years later, they are saying the odds are 1 in 30,000.

I have started a non-for profit organization, Just Call Me Ray, to educate women about the importance of the early detection of breast cancer, the dangers of implants, and rising up when cancer happens. I have also traveled around the U.S. and spoken to different groups about the need for informed consent with breast reconstruction or augmentation. Our social media has exploded in the past year, with thousands of women that have been struggling with illness because of their implants. And my biggest concern is the growing number of women that have been diagnosed with BIA-ALCL.

I might have lost my chest, but I have not lost my voice. I will continue to share my story and educate women and the public. IMPLANTS DO CAUSE CANCER!

Follow me on
Twitter:  @biaalcl_Raylene
Facebook:  Just Call Me Ray
Email:  justcallmerayinfo@gmail.com

My name is Chandra DeAlessandro. My 27-year struggle with “Last a Lifetime” implants has been a long journey. It started in 1989, when I was pressured into implants because of my profession. I believed that I would work more as an actress, stuntwoman and fitness clinician if I got implants. (I am a member of the Stuntwomen’s Association of Motion Pictures, Screen Actors Guild, and a 2nd degree black belt. I have numerous film, TV and commercial credits as well as fitness videos.)

My first breast augmentation involved a polyurethane textured implant called the Meme (made by Surgitek/Bristol-Myers Squibb) which was banned within months of my surgery. Shortly after surgery, my lymph nodes were swollen and tender all the time. I had to have a tonsillectomy, and antibiotics for reoccurring infections in my breast and lymph nodes. I was diagnosed with an autoimmune disease and later developed a very painful Baker IV capsular contracture. Without social media and internet, I really could not get the information I needed – and my plastic surgeon did not notify me when the Meme implants were banned because research showed that the polyurethane used had not been designed to be in the human body, and broke down in the body to a chemical called 2-toluene (TDA), which is known to cause cancer.

In 2000, due to the capsular contracture, I had a capsuletomy (the implants and capsule removed) and replaced the implants. To ease my worries, I was told by my California surgeon that I could get silicone breast implants again if I agreed to participate in a 10-year “Core Study.” He told me that he and the implant company McGhan would closely monitor my health. Again, he did not inform me of any risks. As soon as the surgery was over, I was never contacted to be part of the study. If I had, the following 16 years of pain and suffering could have been avoided.

Instead, my health declined. I had 6 surgeries because of the implants, including a hysterectomy. My mind and body was screaming “IMPLANTS” as Doctors would tell me “NO WAY” – assuring me they are safe and FDA approved. The list of my symptoms was long and complicated: hormonal imbalances, depression, Hashimoto’s, Sjogren’s, adrenal fatigue, mystery rashes, brain fog, chronic fatigue, fibromyalgia, connective tissue disorder, digestive issues, kidney & liver dysfunction, reoccurring sinus infections, bronchitis, scarring on my lungs, breast pain/infections, lymph node swelling and discomfort, peripheral neuropathy, food allergies and more.
As my health declined, my career was also harmed. I had to be more selective in the stunt/acting jobs I accepted.

In October 2015, a routine mammogram ruptured my right implant, sending all the unidentified chemicals in my implants to wreak havoc on my already weakened body. I was finally explanted in March 2016, removing ALL the capsules (including those from previous implants, as well as a mass and 5 lymph nodes). Silicone had migrated all through my chest and clavicle area.

I have been diagnosed with two autoimmune disorders, Sjogren’s and Hashimoto’s, and was tested for implant related lymphoma (BIA-ALCL), a cancer of the immune system, in September 2016. In October 2016 another ultrasound was performed and another mass was detected. The mass was removed, and I am now waiting for additional test results.

I share my story as a mom of two beautiful girls. I never want them to go through the nightmare I have. I want them to love and accept their natural body. My oldest daughter is being tested for autoimmune disorders and has a very weakened immune system.

I advocate so other women can be informed of the risks of breast implants, including autoimmune diseases, capsular contracture, and BIA-ALCL. I want them to be warned that implants can interfere with breastfeeding, and can make mammograms dangerous since the pressure can cause rupture and leakage. The FDA, manufacturers, doctors, and Insurance providers need to be held accountable for the pain and suffering of millions of women. More studies need to be done to prove the safety and efficacy. Women need to be told the truth, so that they can provide informed consent for all the risks, including the financial and emotional costs. The FDA allowed the companies’ “studies” to drop most of their patients – in other words, they were not real studies. The FDA needs to require studies of all the women with implants and require accurate reporting by physicians who know their implant patients are harmed but aren’t notifying the FDA. Insurance companies need to pay for implant removal when it is medically necessary. Although my surgery certainly was medically necessary, I had to pay over $20,000.00. The illness has left a debilitating scar on my health but also my family, marriage, finances and career. No wonder so many women with implants suffer from depression and even turn to suicide.

I co-founded The Breast Implant Victim’s Advocacy. It is a group of women with a VOICE, working hard to change the flawed regulation of implants. We at BIVA stand up for those harmed by silicone and saline breast implants. We are currently lobbying in Washington, D.C. for Ariel Grace’s Law (HR5403) with women from the EssureProblems Facebook page, and others harmed by inadequately tested medical devices.
Although the damage is done on my body, I do feel better since the explant surgery. I have hope that we are making a strong impact and so thankful for Diana Zuckerman and NCHR for all you have done.
Be your own health advocate, fight to be heard and never give up!

Chandra DeAlessandro
Breast Implant Victim Advocacy