Dee’s Story: I Wish I Opted Not to Reconstruct

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After her breast cancer diagnosis, Dee reconstructed with textured implants and had them for twelve years before one ruptured, resulting in multiple complications. She learned about BIA-ALCL and breast implant illness after the fact, and explanted only to have her surgeon intentionally deny her the agreed upon flat closure. Dee suffered greatly because of her surgical outcome and was able to have a revision surgery to fix it the following year. She now advocates for breast implant safety and aesthetic flat closure.

When I was diagnosed with a very aggressive and rare breast cancer back in 2006, I was relieved to learn that breast reconstruction would be covered by my health insurance because when my mother was diagnosed in the early 80’s it was not an option for her. She had two separate radical mastectomies, 5 years apart from each other and by two different surgeons and I remember feeling very sorry for her because to me, it appeared that her doctors didn’t even try to make her look aesthetically appealing. I know she was very self-conscious about how she ended up looking and the saddest part is her marriage did not survive the turmoil that she had to endure, nor did she. My parents ended up divorcing after 32 years of marriage and the disease took her from us at the very young age of 50. I was 30 years old when she died. She ended up moving in with us during her last 2 years so that I could take care of her. I witnessed the worst of the disease and prayed it wouldn’t happen to me, but unfortunately it got me too. 

So, in 2006 when Dr. G gave me the option for a double mastectomy with immediate reconstruction, I was very thankful that I would not look as hideous as my mother did. Dr. G was the plastic surgeon that my general surgeon highly recommended. In her words, Dr. G was an “artiste” because she was known for her specialty in breast construction. At my first consultation with her, she gave me the typical different reconstruction options but since I was not overweight at the time she said having the DIEP Flap reconstruction surgery, where they remove a portion on the belly fat and move it to the chest area would not be a good option for me, but she he told me I was very lucky because I qualified to have silicone breast implants put in instead since only breast cancer patients at that time were the only ones allowed to have them put in. They had been taken off the market in 1992 due to safety concerns. She reassured me that they were now safe and that she would closely monitor me because I would be in a 5 year case study, so I had nothing to worry about.

Side note: During the 5 year case study, I was told I would be monitored which I was not, after we discovered that one of the implants had ruptured, I asked Dr. G about it. She said that I did in fact finish the study but after reviewing my medical notes, the last time I had seen her was in April of 2011 and the implants were put in 4 years before that so the study did not monitor me for a full 5 years.

Had anyone looked at my medical history they should have questioned the implants because according to the FDA’s website, “the FDA recommends that people with silicone implants get regular screenings to detect silent ruptures”, but it was never recommended to me. Maybe if it had, I wouldn’t have silicone laden lymph nodes with silicone migrating throughout my whole body now!

During my breast cancer treatment, I was trying to be the best patient, I never questioned anything like I should have, I just wanted to get it all over with as soon as possible. I had a double mastectomy on March 15, 2006 and at the same time, I had tissue expanders also put in, so after each of my chemotherapy sessions I would go in to see Dr. G to have the expanders filled with saline to make my skin stretch to make room for the implants. I finally finished my aggressive chemotherapy treatment in August of that same year. Dr. Mattson Gates implanted me with the Mentor textured silicone implants in September so that I was able to go back to work late that September. Later she also recreated areolas and nipples and she tattooed them to look as natural as possible. I was very happy with the outcome but I was not warned of any side effects the implants may have on me in the near future.

It wasn’t long after they were implanted that I started experiencing allergies, weakness in my legs, muscle spasms, neuropathy, memory loss, vertigo, heart and breathing issues to name a few. I never associated any of these problems with my implants and none of my doctors thought to connect the dots either. I had many diagnostic tests performed but my doctors were never able to determine the causes, so I just lived with all of the issues. 

Early spring of 2018, I discovered a large lump under my left armpit and of course thought that my breast cancer had returned but instead it was determined through ultrasound and MRI that my left implant had silently ruptured and I had silicone laden lymph nodes EVERYWHERE! I was happy to find out that both of my original surgeons were still working at Kaiser so I scheduled both Dr. N, my general surgeon and Dr. G, my plastic surgeon to tag team again and perform the surgery to remove the 13 year old implants and remove as much silicone from my body. I had that surgery on April 19, 2018. 

At my pre-op appointment with Dr. G, I told her I was considering not replacing the implants, that I didn’t feel like I needed them but she told me in a very matter of fact way that, yes, I did want them and that I would be very unhappy without them so I agreed to have them replaced. I wish at that time that I opted not to reconstruct and just live my life flat with no regrets but I thought it was just too daring to go there so I just went along with her advice again. 

That surgery was very hard on me, harder than my original mastectomies. My body did not recover as easily this time. Not only was I having trouble physically, my emotional state was shaken to the core! My husband told me that Dr. G came out to speak to him right after my surgery, she said it took longer than expected because the implant had disintegrated, she had to scrape the “goo” from my rib cage and that the implants I had were the kind that had been known to cause Breast Implant Associated Anaplastic Large Cell Lymphoma or BIA-ALCL. She told him that it looked very suspicious to her so she was going to have my tissue tested for it. 

I had never heard of BIA-ALCL before so when I researched it I learned that I had every symptom. (Side note: in my medical notes, Dr. G wrote that she informed me of the risk, and that is not true! She never mentioned it to me until after my surgery.) Even though my test results were negative I could not stop thinking they missed something, especially when I was able to finally lift my left arm up, I discovered the same large lump I originally found was still there! I ended up seeing 3 different surgeons and they all said they didn’t feel that the risk to remove the silicone in my lymph node would outweigh the risk of possibly losing the ability to use my arm, but I couldn’t let go of the fear that that lymph node was not sent in for a biopsy. Once that thought was there, I couldn’t let it go. I must have had PTSD because it was very worrisome to me to say the least! 

About a week later after my implant exchange surgery, a friend called me to tell me she heard about what happened and she asked if I heard about breast implant illness, I told her no, I had never heard about it, and after researching it I honestly thought it was a bunch of women that were making exaggerating claims that their implants were making them sick. Since I had just 

had the new ones placed I just wanted to feel better to get my life back on track again so really didn’t want to open any can of worms on this. But not long after my recovery I started noticing I was feeling better than I had in years! There was a time when I was very scared because I was having severe memory loss and feared it was Alzheimer’s. I was forgetting important things at work and my co-worker’s were getting very frustrated with me, not to mention my family always making comments about how forgetful I was. All my medical tests came back normal but once my ruptured implants were replaced, I noticed how clear headed I was, I no longer felt like I was in a fog! That’s when I remembered about breast implant illness and thought maybe it really was true after all. 

After that surgery, my left breast drooped drastically lower than my right breast. When I asked Dr. G about it she said it was because she had to scrape out everything and the pocket was much larger so she replaced the implant with a 700cc implant, a larger size than my original was without consulting me on the size difference. I also found out that she left my right capsule intact, even though she knew of my high risk of BIA-ALCL. The right breast implant was lifted high and tight but the left just hung there. She said I could have it repaired once I healed because she knew I was not happy with the outcome, plus the implant would occasionally flip over and I would have to manually move it back in place. 

About 4 months later I asked her if I could have the revision surgery because I was about to start a new job and didn’t want to take any time off after I started it. She agreed to do it on September 14, 2018. She was only able to correct the drooping a little bit, it was still lower than the right but not as drastic. Unfortunately, there wasn’t anything else she said she could do for me, she said she tacked the implant so that it should not flip over any more. 

On Christmas morning 2018, my great dane jumped on me while I was sleeping. He somehow managed to flip the left implant over but this time it pulled something internally. I thought he broke my rib, that’s how much pain I was in. I was able to get in to see Dr. G on December 27, she had X-rays performed and thankfully I did not fracture any ribs. She said the pain was from internal bruising, said it was not from the implants even though I could feel that it was, I remembered her telling me that she tacked it down and it felt like it ripped away. She told me to take 800mg ibuprofen twice a day but the pain did not go away. I emailed her many times asking her to please remove the implants because I was not able to get comfortable, I wasn’t sleeping well and I just wanted them out. With my persistence I finally got her to agree to remove them but I was put on an elective surgical list. I emailed her again, begging her to please help me, this was not an elective, this was urgent. She finally wrote back and said they would schedule me soon. I could tell she was not happy to help me but at that point I was in too much pain to care. 

I reached out to a private Facebook group of women that had their implants removed after having a mastectomy because I was very worried about how I would look. The memories of how my Mom looked still haunted me but I knew I needed them out. Many ladies reassured me there were surgical options to make it look smooth, one lady sent me a picture of her after her revision with a description of what her surgeon did using a technique where she used her 

excess skin flaps and made a cushion underneath so she did not look concave. I emailed Dr. G the picture and the description of what her surgeon did for her, I asked her if she was comfortable doing the same for me and if I was a good candidate for the same outcome, her answer was “We can certainly leave skin flaps, how thick they are depends on how thick your mastectomy skin flaps are now.” 

I felt very confident that I communicated as clearly as possible to her on what I wanted. My explant surgery was on Valentine’s Day 2019, almost 2 months from when my dog hurt me. I felt like having my implants removed on Valentine’s Day was an appropriate day to have it done because I knew it was the best self-care I could do for myself. I was looking forward to getting my life and my health back. After I woke up from that surgery, she did not come in to check on me to let me know how it went, she didn’t even come out to talk to my husband to let him know either. My post op appointment was scheduled to only see her nurse. I was running a low grade fever that day and had yellow discharge coming from my incisions. The nurse asked me if I was taking any antibiotics but I told her on the morning of my surgery Dr. G instructed me not to take them when she came in to draw on me, so I hadn’t taken them yet. The nurse said she wanted another surgeon to see me because she knew it looked terrible.

I knew it looked very bad but I was hoping it was just excess swelling. My incisions looked like Frankenstein! I couldn’t believe someone that specialized in breast reconstruction would be proud of this outcome and I’m convinced that is why Dr. G would not see me for any of my post-op rechecks. On February 27, 2019 I brought my aunt to come with me to see the physician assistant and because I needed someone to advocate for me. At this point, my husband Tom was not very supportive, but looking back I understand why he didn’t want to see my hideous incisions because I looked so repulsive, I would hide from him when I got undressed!

At this appointment, we asked the PA if he felt this was an acceptable outcome, what would he do if his wife looked like this. I asked him if Dr. G was in the office and she was, so I insisted she come in to finally see me, this was the first time I saw her since my surgery 2 weeks prior. She was not very empathetic, when I asked her what the excess skin was, she said it was fat and if I lost some weight it would look better. She even had the nerve to ask me if I wanted the implants back in! I firmly told her NO! 

During all my other surgeries and breast cancer treatments, my husband Tom was always there for me and he was very supportive. Before this surgery, I emailed Dr. G, telling her my main concern was for Tom and how I wanted to be sure the outcome would be presentable for my husband because I knew going flat would be an extreme adjustment for us. I had hoped she would want to help Tom just as much as she would be helping me. I can honestly say in the 42 years of our relationship this was by far the hardest for us to go through! I looked mauled 

and disfigured, I was a complete turn off! Even though I couldn’t blame him, I questioned whether Tom still loved me, and as much as I hate to admit it, divorce was even discussed. I know he’s ashamed to admit his true feelings, there are things you just can’t fake and not being attracted to someone that now repulses you isn’t hard to hide, his lack of affection was very apparent. 

I’m normally a very optimistic person, I can find the positive in almost every situation… except this one. Even Dr. G told me I was depressed and that I needed to talk to my primary physician about it. I’ve never been diagnosed as depressed before but I know I was not enjoying life as I should, I had to rely on my close friends and family to get me through this. I was shocked to find out there are other women just like me, that their surgeons denied them of a clean, flat closure after their mastectomy and left them grossly disfigured too. The surgeons took it upon themselves to save the excess skin just in case their patients changed their minds and wanted implants again, how dare they! 

I recently began to advocate for these women and to inform others about breast implant safety. Having breasts or lack of them should not be the defining factor of who we are to ourselves or to others. Helping others has taken the focus off of my hardship and has really helped me heal. Thankfully I fought for what I knew I deserved, I found a very skilled Plastic Surgeon, Dr. Sendia Kim (Ed.: Dr. Kim is on the Flat Friendly Directory) from Kaiser in Woodland Hills, CA. I drove 2 ½ hours to each visit to see her and had my last revision surgery on August 14, 2019. 

Tom and I are still working through this, my physical scars may be fading but our marital scars are still healing. The deep emotional pain I still endure has been traumatic for me so I know it will take some time but I refuse to allow it to ruin me. I also don’t want my story to end the same way my parents did because of her surgeon’s lack of care and concern. If anything, it makes me want to fight even harder for my marriage.

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Disclaimer: Any and all information published by Not Putting on a Shirt (NPOAS) on behalf of a third party is for informational purposes only and should not be taken as a substitute for medical or legal advice from a licensed professional. Views expressed and claims made by third parties do not necessarily represent the views of NPOAS.

Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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