A Journey from Bilateral Mastectomy to Breast Reconstruction to Going Flat
on May 11, 2021
Mastectomy and reconstruction surgeries are not completed without risk to the patient. Approximately 33% of women who opt for breast reconstruction after a mastectomy have surgical complications and 20% require more surgery.
Jamie Lee is one of these statistics. Diagnosed with breast cancer at the age of 33 as a wife and mother of two young children, Jamie decided she had a lot of life to live post-mastectomy. However, little did she know that a decision to try surgical breast reconstruction would nearly cost her life.
After a mastectomy, women should know that they have options: go flat, reconstruction, off-the-shelf breast prothesis, or custom breast prothesis. Custom breast prosthesis should be an option that is talked about with women because not everyone is a candidate for surgical breast reconstruction or want to put their bodies through the additional stress of surgery. Jamie had this first-hand experience.
“It’s amazing that if you don’t decide to have the surgical process that custom breast prosthesis isn’t suggested as a viable option,” said Jamie.
Jamie had stopped breastfeeding her youngest son and had felt something in her chest that was just not right. She had gone to the doctor before because she had felt something but was told that it was nothing at that time. Shortly after she weaned her son off of breastfeeding, she felt something again.
“I was in the shower and it was like God's divine intervention. I felt like a shock, almost like a shocky pain when I went to pick up my shampoo. And as soon as I felt my chest again, and I could feel the lump.”
Jamie went to her OB-GYN to get it checked out. The doctor said that it felt like a cyst, but to Jamie, it was incredibly painful, so the doctor did a biopsy. Three days later, Jamie was diagnosed with invasive ductal carcinoma; the tumor was only 1.4 centimeters, which is tiny.
“I did the bilateral before Angelina Jolie did hers,” said Jamie. “Everybody thought I was insane…I didn’t think it was a radical decision at the time. My aunt had lobular breast cancer 20 to 25 years prior…She had a lumpectomy because at that time, that was what they did. Several years later, it came back and was stage four. I had told my boyfriend, who is now my husband, that if that ever happened to me, I’d get a bilateral mastectomy hands down.”
Jamie confidently went into her surgeon and let him know that she had decided to do a bilateral mastectomy.
After going through chemo and an oophorectomy (removal of her ovaries), she decided she was going to attempt to do breast reconstruction, but the reconstruction almost killed her.
“I ended up getting a really bad infection…and I never even ended up getting to the swap where they [replace the expanders and] put in the implant because my infection was so bad. When I finally got to the hospital, my pulse was 260…and they ended up taking me by ambulance to Chicago. I was there for 6 to 7 days [to control the infection]. I got released on my son’s sixth birthday. I still had the expanders in and I went back 3 days later for another surgery to get them removed. And my plastic surgeon said that I’ll heal up in 3 months and we’ll do this again. And I was like, oh no, I am literally never going to do this again because it almost killed me.”
The infection was so severe, doctors prescribed antibiotics that were $500 to $600 a pill. After the expanders were out, Jamie was done trying to make reconstruction work. It took a toll on her mental health and physical health and she just wanted to get back to the person she was before cancer.
“That was it for me. [I was done with surgery]. My kids were babies. My youngest son was in diapers. I was like, I'm not doing this. I want to go to the beach with my kids and pick my baby up. I wanted to survive and be with my kids.”
When Jamie decided to not pursue reconstruction, she knew that she wanted quality prosthetics. Most women who undergo a mastectomy are never introduced to custom breast prosthetics. However, Jamie had seen a prosthetics display including customs in the mastectomy boutique attached to her cancer center, so she knew that there were different kinds of prosthetics available.
Jamie first started with off-the-shelf prosthetics when her expanders were put in, but they weren’t the long-term breast replacement that would allow her to get back to her normal daily activities or provide the mental health benefits that custom prosthetics could provide.
“They’re like chicken cutlets. They don’t look natural at all…If you had a single mastectomy and you were trying to match it up to your other side, you would have a very difficult time…I wanted to try to feel as much of my old self as I could…So for me that is totally flat, I want to be able to match the skin tone to the skin. Even if you’d have an off-the-shelf that’s bright pink color, it still isn’t even going to match…And they are heavy.”
Custom breast prosthetics are made to fit your unique chest wall like a puzzle piece and match your skin tone. They are lightweight, which alleviates back problems for women, can fit well in bras and offer an option that allows women to feel more like themselves again and get back to normal, everyday activities. Off-the-shelf prosthetics offer two color options, tend to be heavy, require a special pocketed mastectomy bra and are not custom fit to a person’s unique shape.
“I wanted to try to feel as much of my old self as I could…When I had my initial bilateral, I wasn't devastated by my chest. Maybe that was because I had this image in my mind that I would [return to normal with surgical] reconstruction and it was going to be fine. And, when that option was gone, I had made my mind up. I wasn't going to put myself through anymore [surgeries]. [I then questioned,] now what, you know what I mean? Because you still you're young and you still have a lot of life to live. You want to be able to somewhat have your old self.”
Custom breast prosthetics are a less costly and less invasive alternative to surgical reconstruction for women who choose not to undergo the multiple surgeries that reconstruction requires. However, not all insurance providers offer coverage for this option.
“I didn’t realize that not everyone was able to have access to customs…It’s an option everybody should be able to have…[When women realize that customs are an option], their insurance may not cover it or your deductible is $15,000 and who can afford that? These are problems that women are running into.”
Custom breast prosthetics require a fitting but are a less invasive breast replacement option than surgical reconstruction. Women aren’t always aware that custom prosthetics are an option because it’s not talked about as an option by surgeons or an oncology team.
“Lawmakers need to understand that a huge amount of money goes into [surgical] breast reconstruction and that not everyone is a good candidate for it. No woman should be discriminated against because they can’t financially pay for another option…If you don’t have a really good insurance plan, you just have two choices. You either go under the knife and hope for the best or you get the off-the-shelf prosthetics that are really horrible.”
Breast cancer isn’t going away and doesn’t discriminate. Women of all ages, races, and walks of life get breast cancer. After a woman experiences breast cancer, she just wants to get back to normal activity, feel confident in her skin, and have that mental health boost of surviving a traumatic experience. Custom breast prosthetics are made to look and weigh the same as a real breast, providing both mental and physical benefits during the recovery process.
Essentially Women is working to reintroduce the Breast Cancer Patient Equity Act, which is federal legislation that would require Medicare to recognize custom breast prosthesis as an eligible benefit after mastectomy surgery. We are also working with members in many different states to introduce state legislation to require Medicaid or third-party insurances to recognize custom breast prosthesis as an eligible benefit. For more information, contact Essentially Women at or call 800-988-4484.
Follow Jamie Lee on Instagram at @Spero_Hope_llc_ for more on Jamie’s journey. Jamie Lee and Essentially Women Member, Lori Miller from Studio I, were featured on our Industry Matter’s podcast episode “Celebrating Strong Women during Breast Cancer Awareness Month.” Make sure to listen to more of their story here or on your favorite podcast app.
Thank you to Jamie Lee for sharing her story. If you know of women in your community who would like to share their story to help promote the advocacy efforts to pass legislation for custom breast prosthesis, please contact us at firstname.lastname@example.org.
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