We would like to conclude our breast cancer stories with this story from AA. It is a great story of how one can be proactive about their breast health and no longer live in fear of breast cancer having the chance to so rudely intrude into her life.
“Under Re-Construction”
One Woman’s Prophylactic Bilateral Mastectomy Journey
“Abnormal right breast. Suspicious microcalcifications in a cluster.” What? How can this be? This is my very first mammogram. I have zero family history of breast cancer, so this should be normal.
Because of this finding in October 2014, I needed to get magnification views which I got the following month. “You will need a biopsy.” The stereotactic biopsy was painful. I feel like I’ve just been shot in the boob! Thankfully, the radiologist managed to get some of the microcalcifications within the first four core samples in early January 2015.
“Atypical lobular hyperplasia with apocrine metaplasia. Even with no family history, this places your risk for developing breast cancer at over 40%.” Atypia is bad news; it has the potential to lead to cancer. I had a coin’s toss chance of getting breast cancer. What should I do? I had some options: enhanced observation, lumpectomy, or prophylactic mastectomy. When I was a medical student, the answer was obvious to me: You lop them off and get new ones. But this was real, and it was happening to me. The decision wasn’t going to be as simple as I once naively believed it should be.
With enhanced observation, I have to live with the fear of what if the next biopsy is cancer? With a lumpectomy, my breast surgeon Sharon Lum, MD of LLUMC advised me that even with the small metal marker left behind from the needle biopsy she would be scooping out breast tissue almost blindly until all those suspicious microcalcifications were removed. With each scoop, she would decrease the volume of my breast on only one side. What if I needed biopsies of abnormal findings in my scans every six months? That still leaves the rest of my breast tissue, which could potentially become cancerous. And I would be responsible for the cost all of my reconstruction once I couldn’t stand the shrinkage and asymmetry in my breasts anymore.
A prophylactic mastectomy seems extreme to many because it entails cutting out breast tissue that has not yet become cancerous. I’ll get you before you get me, cancer! With her announcement, Angelina Jolie immediately became an advocate for women who wanted to be proactive and cut their breast cancer risk dramatically. There were risks and benefits to all these options, so it was a decision that I couldn’t make lightly.
I need more data to make sure I’m making the right decision for me. At the end of January 2015, I opted to get a genetic test as I have colon cancer and melanoma in my family history, and many types of cancers have been shown to be linked. While I waited for the genetic test results, I began my search for the best plastic surgeon in the area to do my breast reconstruction in the event that I decided to undergo a prophylactic bilateral mastectomy (PBM).
In early February 2015, I met Dr. Miles and his nurse Vicki for the first time. While I was in the waiting room, I was impressed by how aesthetically pleasing my surroundings were—a good sign that much care was paid to how things are put together at this office. Because I was thinking I’d kill two birds with one stone, I went in with the not uncommon idea of having a butt lift the same time I had reconstruction done. Dr. Miles explained that a simpler procedure would carry less risk for complications and provided me with referrals to other plastic surgeons so I could compare my options.
In late February 2015, I received my genetic test results. “MRE11A is a variant of unknown significance, but it is linked to the BRCA1 mutation which is known to significantly increase risk for developing breast cancer.” Clearly, my body cannot fix itself as I have deranged cells in my breast already. I guess this means the best choice for me is a PBM with reconstruction. Like many women who choose this route, I so badly wanted peace of mind because this would decrease my personal risk for developing breast cancer to 5%, less than half the risk of the general population. As Dr. Lum told me an oncology psychologist once said, “How much does peace of mind cost?” I am willing to pay whatever price for my own peace of mind. The pain will be very real and last awhile, but it too shall pass.
I looked at many southern California plastic surgeons’ portfolios and ultimately decided that I wanted Dr. Miles to do my reconstruction. I’m going to keep it simple and have the two-step reconstruction with tissue expanders and implants. No point in having more cuts on my body than I need, right? If I’m still not happy with my butt, I could always do more squats.
Not only were Vicki and Dr. Miles very personable and willing to answer all my questions, it was apparent to me that they genuinely care for all their patients. Additionally, I have other physician friends who had only positive things to say about Dr. Miles. Because people within an industry know who the best are within their own industry, we physicians know who the best physicians are to see for a particular medical need. Recommendations about surgeons from other doctors are the best recommendations I could possibly get. Dr. Miles’ reputation was excellent. I liked his office staff who, along with Dr. Miles, made me feel I belong. That is a very important factor because the nature of breast reconstruction necessitates a long relationship with your surgeon and his office.
As a fourth-year medical student during my elective plastics rotation, I had the opportunity to be the first assistant to a locally well-known plastic surgeon who once was the residency director for the plastic surgery residency program at LLUMC. The patient was a breast cancer patient who had her right breast removed ten years prior, so she was flat and fabulous on that side. Ten years later, she was diagnosed with breast cancer in her remaining breast. This time, she decided to undergo reconstructive surgery using her abdominal rectus muscles, what is called a bilateral TRAM flap procedure. Being on the operating side, the whole reconstruction seemed pretty easy (standing in the OR for about six hours) and magical. Wow! I can’t believe that he created new breasts out of abdominal muscles. This is amazing. Despite seeing the patient in her hospital bed the next day, I could not imagine how her body felt. All I had to gauge how she felt was her beaming smile and looking so happy that she had breasts again.
Now I’m a physician, who understands the different types of breast cancer at the cellular, anatomical, and physiological level, as well as the potential ramifications of each treatment option. One would think that having that understanding would make this decision easy. The accompanying emotional rollercoaster, however, was a ride I wasn’t expecting. There were the good times. My boobs will look like they’re 20 when I’m 80! They’ll be perky forever! And there were the not-so-good times. What if my nipples die? What if I have complications and this takes longer than expected? What if I lose sensation for the rest of my life? What if I developed breast cancer if I don’t choose to get rid of almost all my breast tissue now? The what-ifs tormented me, as well as my husband who is also a physician.
For weeks I alternated between these emotions. At the advice of a friend, I joined a closed support group on Facebook, Prophylactic Mastectomy, which is a community of women who have gone or are going through the same journey; they provide a wealth of information and support which helped give me a realistic expectation for how my PBM with reconstruction could turn out. Some of the pictures of complicated cases were frightening but as a doctor, I know these were not the norm. The love and warmth of these women from all over the US, the UK, Canada, Australia, and New Zealand was matched by their strength and humor. I learned a new word: foob, slang for fake boob. LOL!
As the time drew near, I focused on strengthening my core through yoga with Lisa Vest at Vasa the Studio and preparing my home for the weeks I would spend recovering. By Easter weekend, I was feeling comfortable with my decision. Maybe I could do this. I understand the risks and the benefits. And for me, the benefits outweigh the risks. I know I have excellent surgeons. I expect I’ll have a good outcome.
I had my reconstruction pre-op appointment at the end of April 2015. Dr. Miles took multiple pictures to document how I looked before my PBM and asked me detailed questions to make sure he understood what my desired result would be. The one thing he told me that made me a little sad was that because this is reconstruction—and not augmentation—I may not ever look as good as I looked at that point; however, he promised that he would do his best. I really appreciated his candor and was able to develop realistic expectations for my reconstruction. Further, I had both his and Vicki’s mobile phone numbers in case of any questions or concerns. Equipped with contact info and prescriptions for post-op meds, I now felt ready mentally, emotionally, and physically. I can do this! In a couple weeks, I’ll be on the other side!
On a bright sunny morning in May 2015 at LLUMC, Dr. Lum performed the skin- and nipple-sparing bilateral mastectomy; Dr. Miles then inserted tissue expanders under my pectoralis muscles, attached acellular dermal matrix (Alloderm) to my chest muscles, and placed four drains. I stayed one night at the hospital. I suffered through a lot of nausea and pain, which was mostly controlled with the medications ordered for me. The nausea was so bad that my plans for getting up a few hours post-op were shot. Early the next morning, I was determined to go home so I fought through the nausea and walked around the unit, as well as demonstrated that I could void on my own. I grinned a very large drugged up grin. I did it! I’m on the brighter side!!
Within minutes of my accomplishment, Dr. Miles came in to see how I was doing. He made sure that the drains were in place and there were no signs of infection. He explained what he did and asked if I had any questions. He told me that he would see me in his office in a couple days. I felt happy and at peace, and I looked forward to getting well. But oh, the pain! I’ve been flayed and had hard plastic objects with sharp edges shoved under my pecs. Thank goodness for modern medicine. Nurse, is it time for my next dose of Dilaudid…?
Two days later, Dr. Lum called me with my surgical pathology results. “I’m so happy you made the choice you did. They found just about every type of atypia and hyperplastic process in the book in both breasts. If we did enhanced observation, we would have biopsied you almost every year.” I’m so glad I made the decision I did. I dodged some serious bullets by getting rid of my ticking time bombs.
I had my first two drains pulled seven days post-PBM; my last two were pulled two days later. I blame the drugs I was on because I stretched a yoga stretch and popped one of the sutures that anchored my left tissue expander. The tab of this partially-filled expander began to rub rather painfully on the inner aspect of my left breast skin. Dr. Miles educated me on the mechanics of the expanders, gave me an additional fill to help flatten out the expander, and called in a prescription for some lidocaine patches to help alleviate the pain. I can feel pain and that means…I have retained sensation! He smiled and said he has the “odd patient” every so often. Are you calling me ‘odd’? If so, I’ll take it—I still have feeling in my breast skin! Two days later, Dr. Lum looked at me with surprise when I thanked her for doing such an excellent job with my mastectomy because I still had sensation. “No, it wasn’t me! That’s all you, your body.”
I kept a close eye out for any redness or warmth that might indicate infection, my number one fear. I began to telecommute for work two weeks after my PBM. My next few fills were uneventful other than my chest gradually grew at 50cc increments. This is so weird and fascinating. My foobs are going through puberty in a matter of weeks! When I hit the 350cc mark, my chest felt so heavy. I’m bending over and straightening myself out like the Dippy Bird. This is kind of crazy. I’m nowhere near my original breast tissue weight, so why does my chest feel so heavy?
Two weeks later on a Monday, I was brought up to 450cc in both expanders. While doing post-mastectomy exercises, I did something that gave me sudden pain. Oh, no! I popped some sutures! These “popped sutures” poked mercilessly at my tender breast skin from the inside. I could see the little bumps under my skin. I was in so much pain that I was in tears from morning to night. I made sure that I used lidocaine patches during the day and heavily drugged myself with Percocet and Valium in order to get some sleep at night. I thought I could hold out until the following Monday, but I couldn’t. I can’t take this much longer. I’m going to take my Wustof knife and cut them out myself!
That Friday morning, I left a pain-filled voicemail message for Vicki. Even though their office was closed on Fridays, she returned my call and said she would let the surgeon know immediately. Within minutes, Dr. Miles called me to ascertain what the problem was and what could be done about it. He met with me at his office later that day, examined me, and determined that I didn’t “pop any sutures” but rather exposed some suture knots that anchored my pectoralis muscle to the Alloderm he had sewn in to create a supportive sling for the final implants.
Because the Alloderm did not have enough time to mesh with my muscle, Dr. Miles couldn’t cut the torturous knots out. Instead he asked if I would be amenable to having some of the fluid drained to ease the pressure of the knots on the inside of my skin. Yes, anything! I’d do anything not to feel this pain anymore! He drained 60cc from my left expander, and I felt instant relief. He recommended letting my tissues rest for a week and a half before we start to bring the left expander back up to meet the right. You know, I named them, these suture knots. Dr. Miles looked at me with one raised eyebrow and a slight smile. I call this one Excalibur—after the Sword in the Stone—and this one is Sir Lance-My-Poor-Skin-a-lot. He laughed. Well, what was I supposed to do? I could cry, or I could laugh. I did both—I laughed through my tears.
Over the next two weeks, my left expander was very slowly brought up to match the other without further incident. By July 1st, my expanders were both at 450cc where Excalibur and Sir Lance-My-Poor-Skin-a-lot first made their appearance. Although those points on my skin were much better than before, they were still tender. Unlike many women who lose some or all of their sensation and feel muted pain, my breast skin still retained sensation. Miraculously, my nipples were still responsive to temperature and touch…the trade-off to the constant pain I suffered throughout the expansion phase. This gave me a whole new meaning to the phrase ‘no pain, no gain’….
I looked at myself in the mirror. Oh my word, I’m standing and walking like a Neanderthal. I need help to get back into some semblance of physical shape in order to move around like a normal person when I physically return to my offices so random people looking at me can’t tell that there are these large foreign bodies inside me. During the expansion phase, one has limited range of motion and strength so there are many muscles that become weakened during this long process. My back muscles became weaker as time went on. I began oncological physical therapy at Outback Physiotherapy. My physical therapist Lisa Olson Hunt, RPT did wonders for me during this phase of reconstruction when time seemed to move like molasses. In a couple weeks, I was able to drive short distances by myself again. Freedom! I returned to work at both my offices with lifting restrictions, but I was functioning again.
As some of my bosom buddies from my support group went through their second step in reconstruction (removal of expanders and replacement with implants), I longed for my day to come. My friends and family told me that I looked great. Yes, and that because I’m wearing clothes that hide what my Sponge Bob Square Foobs really look like. LOL! But thanks for saying that I look good with my Frankenfoobs. It helps me appreciate what surgical magic Dr. Miles can perform because no one could tell, at least outwardly, just how many changes my body had undergone.
I also call them my Iron Maidens, legalized torture devices that are sewn directly onto my rib cage. As my skin and underlying tissues slowly heal to create a suitable pocket for my implants, I must endure these boulders (as so many of my pink sisters liked to call them) for anywhere from four to six weeks. When I invite my girlfriends to touch them, their initial reaction is the same: Shock. “Oh, they’re so hard! You poor thing.” “Oh, my! They’re like 2-liter soda bottles that have been shaken up. OMG, they’re so hard! Now I understand why you want them out.” I honestly don’t think that anyone who has never had expanders could fully understand how un-fun these are, but I really appreciate the sympathy. They’re hard as rocks and uncomfortable as all get out. One day when I have time, I need to invent a device that could achieve the same goals and yet be less unpleasant….
The immediate relief that my bosom buddies report right after the remove and replace surgery is universal. I waited impatiently for the weeks to pass. How much longer do I have to have these spare foobs in? Right, four more weeks to go. I want my soft squishies…and soon!
Two more weeks to go. Ow! These foobs are starting to yank on my ribs. Just fourteen more days. I’m almost there. My scar tissue was shrinking the pockets, and the expanders had no choice but to move toward the path of least resistance. Remember how I popped the suture tab on my left expander early on? Well my left expander began to move laterally as the left pocket developed a little more scar tissue and began to shrink. Yay. I now have a foob making its way into my left armpit. Hmm, not the look I’m going for.
I had my step-two pre-op appointment with Dr. Miles a few weeks before my remove and replace surgery. We discussed my expansion course, specifically how I had to stop fills prematurely because of my Medieval friends crashing my foob party. Based on the width of the pockets, Dr. Miles selected four sizes of implants for me to “try on” in the OR; that was a total of twelve—three of each size in case there was one of any particular size that was defective. He discussed the possibility of drains in the event he needed to correct my outwardly mobile left pocket and more Alloderm for the upper poles of my breast because I had visible horizontal grooves across each breast area, the telltale lower margin of my pectoralis muscles. Oh, no…not the drains again! But you know, I’ll take drains for up to a week any day rather than wear these Iron Maidens any longer than I need to.
Alternatively, he could use fat grafts or a combination of both. Dr. Miles said he wouldn’t know for sure until he went back in to see what the situation when he was inside. Vicki took several pictures from various angles to document my final stages of expansion. She was so sweet and supportive, and was nearly as excited as I was to cross that finish line: “We just want you to be happy.”
T minus 7 days. I’m pretty sick of these spare foobs. I call them spare foobs because they’re a lot like spare tires. They’re hard, and they don’t quite fit right, but they do the job ok. I take the time to get my house ready again as I will have limited strength and range of motion.
T minus 2 hours before check-in. I’m almost there! Dr. Miles will take off my spare foobs and give me my high-performance smooth, high profile Mentor silicone rounds. What’s this? Oh, it’s Vicki just texting me to say she’ll be thinking about me today! I feel really good about today.
For Thursday September 3rd, I made a sign to wear as a surprise under my gown when Dr. Miles comes to visit me in pre-op. The nurse there laughed and thought it was a fun idea; she helped me fasten it to my chest under my gown. When he arrived, Dr. Miles greeted me by name with a big smile. With graffiti marker in hand he asked me to stand, brought my gown down from my shoulders, and stared in confusion for a few seconds. When the words “Under Re-Construction” registered, he laughed and said that made his day. I told him I made it just for him. He loved it so much that he wanted to put it on the OR.
T minus a few minutes! Time to go to the OR. Look! The sign I made for Dr. Miles is taped to the door of my OR. The anesthesiologist and nurse who were wheeling me to the OR got a good laugh and said that is such a great idea. Just before I was given my anesthetic, Dr. Miles leaned over one last time and said, “It won’t be perfect, but I promise I’m going to do the best I can.” I trust you. I never was perfect to begin with.
_____________________________
I’m so sleepy…. Oh, I have my squishies now—yay! But where’s Dr. Miles? Can I talk to him before I go home? Apparently, Dr. Miles had spoken to me twice already in the recovery room. I just couldn’t remember. Nevertheless, he came by again and told me that he put in the implants that fit in my pockets best (550cc) and did fat grafting on me. I was still very sleepy but he smiled and said, “I think you’ll be very happy.”
Saturday morning of Labor Day weekend, my iPhone rings. Wow, it’s Dr. Miles! He wanted to know how I was doing. I’m doing extremely well. I’m sore from the fat grafting, but I’m doing really well. I told him that I was waiting for the 48hrs to be up before I could take off the dressings and have a look at myself. He said that it was fine to do so now. He reminded me of my post-op instructions and told me to call him or Vicki if I need anything. He again told me that he thinks I’ll be very happy with the results.
Time for the reveal! Whoa, I look like a mixed martial artist who got boxed in the foobs and abs. But I am victorious. I made it through this journey…and most importantly, they’re squishy and feel like my own breasts!
Writing this, I am four days post-op and have several more weeks of healing to go. But I can see beyond the already fading bruises and Dermabond-covered incisions. As a physician, I see the skill and expertise with which Dr. Miles reconstructed my new breasts. I’m astounded and impressed by his meticulously detailed handiwork and sense of artistry. I am so thankful and blessed that Dr. Miles was the one who helped me with my post-mastectomy reconstruction.
As a woman, I feel whole, confident, and beautiful.
~ AA
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