My Previvor Journey
Road to the Decision
Surgery or Not?
As previously mentioned, I had known for 14 years that I carried the BRCA 2 gene mutation prior to my mastectomy. Living with this information for so long is both a blessing and a curse. It was troubling to know I was essentially 'doomed' (or that's how I looked at it); women with a BRCA mutation have up to an 55% lifetime risk of getting breast cancer. However, knowing for this length of time also allowed some of the emotion to fade. I became more comfortable with the notion, was able to research and begin the acceptance. This ultimately allowed me to apply more practicality to my decision-making. Of course emotions still played a role, becoming a mother in the last 4 years made it even more important to speed the preventative measures along; I wanted to remove as many risks as possible to feel more confident that I could be there for my children. I felt blessed, actually, that I had known as long as I did. I know not all people are that fortunate and the news is sprung on them quickly. It's harder to feel confident in your decision-making when it is rushed.
I began the arduous process of monitoring my breast health at the age of 23. It was recommended to begin this 10 years prior to the youngest family member's first diagnosis; that was my aunt Cindy, who was only 33 when she got her first breast cancer diagnosis.
The monitoring eventually played a key role in thinking more seriously about prophylactic surgery. Every 6 months I alternated having an MRI and mammogram/ultrasound. It gets quite exhausting (and expensive) and especially at that age, with denser breast tissue, there are a lot of false positives. I had to chase down a few biopsies, which take an emotional and physical toll. I believe recommendations have evolved now and mammograms aren't recommended until after age 30 due to radiation exposure.
About 7 years prior to my surgery (and before kids), I did some thorough research on a prophylactic mastectomy. At that time, I was now a young adult, living independently, but also not yet a mother. I figured it was time to start taking some things seriously and getting a handle. I live in the Dallas/Fort Worth area so I also had the benefit of being in a larger metro area with plenty of healthcare choices. I went through several different breast oncologists who referred me to plastic surgeons to get an understanding of the ultimate results. I met with a lot of doctors and I must admit, what I saw then did scare me off a bit. I had to take a break. It was interesting the amount of opinions I received from various doctors; some encouraged me to push forward right then with the surgery, others encouraged that I waited until I had a family (if that was in my plan) and then pursue. I didn't like what I had seen, I wasn't ready to make the choice and I still hadn't had a family yet - and that was my husband's and my plan. I'm glad I waited. There were so many factors that showed me I truly wasn't ready. I'm grateful I had the opportunity to wait (again from finding out so early/young). When I picked it up again, it was absolutely amazing the advancements that have been made in that 7 years; so much so, that I had the benefit of a robotic procedure!
Calendar Tip for Timing:
My plastic surgeon suggested having the procedure towards the beginning of a calendar year, as that would allow me the most time to take advantage of meeting my insurance deductible. I thought that was great advice, and knowing what I know now (3 surgeries later) that proves true. It's also a good time of year to recover (for the first surgery, anyway); it's typically more cold and dreary out so it just mentally and emotionally feels better to be cooped up then.
From a BRCA perspective, unfortunately the monitoring on other areas of the anatomy continues. I had originally planned to have my Fallopian tubes removed during this initial surgery (to fend off ovarian risks prior to planned hysterectomy at 40), but given the robotic element, opted to delay this. So, tackled that surgery along with additional fat grafting later in the year (again, because I've met my deductible). I will begin monitoring my pancreas, due to an increased risk there as well. All good things to knock out while I'm covered, and because its 2020 (ha, didn't know that yet going into all of this).
I can't stress enough the importance of selecting the right team of doctors. I did go through quite a few in just the monitoring phase. Being a previvor can be difficult to navigate with a medical team to get the attention you need and deserve. You don't yet have cancer, and breast cancer is a breast surgeon/oncologist's primary focus. Finding a doctor that is well informed with heredity breast cancer can make all the difference. I found many of my breast oncologists didn't seem very familiar with the BRCA mutation. They were aware of it of course, but seemed very uneducated when it came to providing recommendations. I wanted a doctor that could recommend the right resources given my specific scenario. Someone that was on the cutting edge of research and advancements in the breast cancer arena and that of hereditary breast cancer, and so on. That led me to my ultimate destination, the UT Southwestern medical team.
I could immediately feel the difference in care and I finally felt like I was being truly monitored by a cohesive team. The breast surgeon/oncologist, in my particular case, is the lead and primary doctor that provides the comprehensive view. He or she orders and advises the monitoring of your breasts (and supplements to other organs). The breast oncologist maintains a regular regimen of mammograms, ultrasounds and MRIs (mine alternated every 6 months). These images are collected by a breast imaging team/facility (i.e. radiologist, but specialist doctors within each of these fields, sometimes. I also had similar monitoring done in my pelvic area (pelvic ultrasound), which also required coordination with an obstetrician. As you can see, it can turn into quite a few doctors. But, you need a lead. In my case, all of this funneled up to my breast surgeon/oncologist. Again, this is the doctor that can provide a more long-term, comprehensive view of your health. Having this single, yet overarching viewpoint can help to identify changes in your breast and/or other areas. In the past, this chain of command didn't seem well coordinated, but now it was more smooth.
My original breast surgeon at UT Southwestern (Dr. Rao) was actually not who ultimately did my surgery! I had seen her for a few years and together we had come up with a plan that I would have my surgery around age 35, when I had the 2 children I had planned and was finished breast feeding. Unfortunately, she was recruited to another hospital. That was a bit unnerving, but everything happens for a reason. She referred me to Dr. Farr, who completed my surgery and is now my breast surgeon (more on that, later). Thankfully our timing aligned perfectly, as I hadn't been monitored regularly in almost 4 years due to having my 2 girls. So when I returned, it was game time. I immediately clicked with Dr. Farr. I felt this sense of comfort and passion from her. She quickly got caught up to speed.
After a few visits and getting closer to my plan and the recommended time frame for my surgery (35), she introduced the robotic mastectomy option to me. I was curious (what the heck is that?!) and she was definitely jazzed. She told me I would be a perfect candidate (someone with a predisposition to cancer and some other factors I'll detail shortly). She was so excited that she offered to share with me her presentation to the Surgeon Board that detailed her research and it was incredible. Now, I was really interested... but then I asked, well, has this been done before, here in the US? Well, not so much. Eek, now that's a little scary. But, I believed in her. So, I didn't let that scare me off.
What is a robotic mastectomy?!
Brief history about robotic mastectomies
Robotic mastectomies originated in France and have been conducted for several years using the da Vinci robot with multi-ports (or multiple arms). This robot is not necessarily new and has been used in several other types of surgery, however using this robot for breast mastectomies is relatively new. A robot is used to remove breast tissue vs a surgeon manually removing it. There have been a few operations here in the US. However, these were not yet authorized by the FDA. In fact, the FDA issued a statement about robotic mastectomies in February 2019 (just one year prior to my surgery) as they deemed the multi-port robot not yet vetted enough and with several risks that needed to be further explored. That's where my hospital comes in, UT Southwestern, located in Dallas, TX. They are leading the national charge in continuing the efforts behind robotic breast mastectomies. My two surgeons in particular, Dr. Deborah Farr, breast surgeon/oncologist, and Dr. Nicholas Haddock, plastic surgeon, had been training over the past 2 years as well as working with the FDA to receive official approval to launch a new clinical trial with the single port da Vinci robot for robotic mastectomies. The difference here is this robot has a single arm (vs multiple) which makes it much easier to control and thus reduces risks. It is through the single port robot they feel they can advance the medical field towards using robotic mastectomies with more prevalence in the future.
Benefits of a Robotic Mastectomy
I had learned this would be far less invasive which leads to several benefits:
Smaller incision/less invasive:
Typical mastectomies require a 5-9 inch incision; with a robotic mastectomy the incision is far more aesthetically pleasing, with an incision of only ~1.5 inches.
Faster recovery time: Due to the less invasive approach, the bruising is minimal and smaller incision means faster to heal.
Immediate reconstruction capability (i.e. direct to breast implant). This is possible with the traditional method as well, but with a robotic mastectomy the opportunity to do so is higher.
Increased likelihood of sensation in the breasts.
Other benefits include more doctor accountability as the entire procedure is filmed and this camera view also allows more insight into the actual surgery.
Candidates for Robotic Mastectomies (or clinical trial):
To my somewhat limited knowledge, the clinical trial is limited to a specific audience (there may be more but I fit the below requirements):
Patients without cancer and having the surgery for preventative measures.
Small breast size (A/B cup).
Why I chose a robotic mastectomy
Well first, I'm very proud to say that I was the first patient in the world (and Dr. Farr/Dr. Haddock the first surgeons) to have/conduct a robotic double mastectomy, using the Surgical da Vinci Single Port Robotic System.
The ultimate goal of this website was to also share more about robotic mastectomies and shed more light on this potentially growing option for women.
My prophylactic mastectomy was essentially the launch of the clinical trial they had approved by the FDA; I was patient number 1. Now, circle back to my time in Dr. Farr's office being introduced to this concept. I was aware the chances were high that I'd be their first patient and she told me as such. And boy, is that a scary thought! She eased my nerves talking about their years and hours of training, numbers of cadavers and so on. But, always acted like it was no big deal (that helped :)).
I kept coming back to the images I had seen 7 years ago, and how much had advanced since then. This procedure seemed like the start to a whole new beginning on types of mastectomies. I knew I'd much rather be on the cutting edge and the future of where mastectomies could be headed, than not. I was confident in my doctors, I trusted them and I felt that connection with Dr. Farr. I had met with my plastic surgeon, Dr. Haddock, well before the robotic option was even introduced. Meeting with him prior was part of my regular research to gear up for my surgery. I met with him once again, to get his take on the robotic procedure. He also made me feel confident in their training. He took a less enthusiastic, yet more pragmatic approach in explaining their training, history and reasons why. This was actually a perfect balance for me. I liked how excited Dr. Farr was but I also wanted to make sure this was the correct dose of reality and emotions. His particular surgical portion wouldn't be conducted with the robot (placing the tissue expanders), however he would serve as the in-room, on-hands guide for Dr. Farr - who would actually be conducting the mastectomy from a different room via the robot!
As mentioned, one of the benefits of robotic mastectomies is going direct to implant and potentially less surgeries. However, I was a small breast size (A?) and with all this, my goodness, I wanted to get larger breasts out of this! So, he actually encouraged me to get the tissue expanders. This would allow me to customize my breast size and have more control of the aesthetics after the initial surgery. So, that's what I did.
As mentioned, I had known for quite some time about my gene mutation, had come to terms that I wanted to have a mastectomy after having and breastfeeding both of my children and lastly, I had come around on leaping into the robotic mastectomy option. Now, it was nearly go time. So as the months drew near and the time was upon me, it was time to face the music.
My friends were gracious and the weekend prior we went to lunch together and celebrated with a 'Bye-Bye Boobies cake' (and some flights of tequila).
I really picked up my researching again and found all kinds of forums and blogs. This was helpful to put my mind at ease. I've included these links in the Quick Tips section.
But, life has a funny way of moving on and not letting you sulk for too long. I had some interesting events happen in the days leading up to my surgery. It was my sign to buck up and be a Strong Momma. Some of it feels so ridiculous, I thought I'd share.
My 4 year old daughter, Cora, still had an ear tube remaining in one ear. Apparently, it had been in there too long and was posing a risk at this point; her doctor recommended having it surgically removed. Once removed, she would not be allowed to get her ear wet for 2 months. Not even in the bathtub. So, doing this surgery anytime in the spring, would lead into summer and would be a pretty big inconvenience for a kid that wants to swim. So it had to be soon (January) to accommodate for that. Well, wouldn't you know, the only DARN DAY the doctor had available for this surgery was THE DAY BEFORE MINE! I mean, really!? Who wants to deal with those nerves right before having your own major surgery. Thankfully, it went well. But my boobs and I certainly didn't get to relax that last day before surgery. Not that I even know what I would have done, ha.
That night before my surgery, I was looking forward to taking a nice, hot shower. I had read on the FORCE forum many ladies saying how important that shower was to them, as it's the last time they could feel their chest; pretty heavy stuff, I know. Well, guess what, the hot water tank went out THAT NIGHT. No hot shower for me. It was God's way of telling me... oh shut it and just get on with this already. Time to put your big girl pants on. So, I took that nod and moved on.
As I packed my hospital bag that evening, I did listen to a powerful song. It really did help me relax and get past all the noise. It turns out to be a good anthem for all of this... Kacey Musgraves, Rainbow:
Everything is all right now...because the sky is finally open, the rain and wind stopped blowing. But you're stuck out in the same old storm again . Let go of your umbrella because, darling, I'm just trying to tell you.. there's always been a rainbow hanging over your head.
It will all be alright.
Summary of Experience
I had my surgery February 1, 2020 (thankfully before COVID-19 hit the US hard). I think the results are astounding! My incision is approximately 1.5 inches vertically under each of my armpit areas. My 'scar' has emerged and is quite minimal. As I mentioned, I opted to get tissue expanders with a goal size of being a small C (420-450 cc's). The initial surgery went well and was just under 6 hours. I was happy with the results that very same day - even with just expanders! I had minimal bruising, it was really quite incredible. I was in the hospital for one night (which is still typical). My overall recovery went quite well. I had my drains removed and completed filling my expanders to the desired size within the first month. The downside is that sensation never returned to my breasts, as hoped.
I had my second surgery in mid May to swap out the expanders for breast implants. At that time, I also had fat grafting done to add around the implant area to make this look more natural and minimize the rippling appearance that you can see from the implants. (Second Surgery details also below).
All in all, I'm incredibly happy I took the risk. The anticipation for the surgery (not even the robotic part, just the idea itself) was honestly the worst part for me. I read many others saying the same thing. I'm so glad its behind me and now I can just look forward! There are of course some downsides but I'm working through accepting these. As I've said, I have 2 little girls (ages 4 and 2), parts of the recovery were tough as I wasn't able to hold them for a total of 2 months (weight restrictions). I was so grateful to have a super supportive family that helped me get through all of this both physically, emotionally and mentally.
I hope this helps someone, and I hope to continue to spread awareness of the robotics advancements and clinical trial in Dallas. My doctors were incredible! Below is a more detailed journal of experience post surgery with pictures.
My surgery was scheduled for 7:00 am, we had to arrive at the hospital 2 hours early for check-in. My husband, Michael, and my mom were there to help get me admitted and offer moral support. My dad was at home watching our two daughters. The hospital staff were quite minimal - it actually looked like a ghost town in there! Typically, surgeries are not scheduled on a Saturday; they had purposely scheduled mine for a Saturday to minimize the number of people around, being that this would be the first robotic procedure. The nurse who checked me in was named Carol and she was exactly what I needed that morning. She was bubbly, light, happy and made me feel comfortable. She got me all set up in the pre-op room where I changed and was asked several more questions. I anxiously watched the clock. It kept getting closer and closer to 7 am (my surgery time) and I couldn't believe how time is flying. I got my IV and made a joke how scared I am of IVs even though I know they are about to completely cut open my chest… but alas, the lady screws up my IV and it doesn’t go correctly in my hand, so she has to do it a second time in my forearm… see, I do have a reason to be scared of those!! So far, I’d been relatively putting on a brave face, smiling, joking, but the anticipation and anxiety were becoming pretty overwhelming, I just tried to remember to stay calm and breath and not think about it too much. I even managed to smile for a picture.
My doctor, Dr. Farr, finally came in to greet me. I'll never forget she had goggle marks on her face. I'll find out later that she got minimal sleep and was already up practicing for hours, hence the goggle marks. She reviews the procedure again and gives me more paperwork to sign specifically regarding the clinical trial. I had been asking about this for a week or so, trying to avoid reading it the DAY OF SURGERY. Sure, there are risks in being part of a clinical trial and of course being ‘the first’ but I was confident in my doctors and the process. Dr. Farr goes on to read what you’d expect… that you’re a part of a trial and there are risks, blah blah blah… but then she uttered something I had not heard yet. “You will actually be the first patient in the world to have this procedure”... excuse me, come again?!
So, the ‘world’ comment obviously threw me, scared me and it made me cry a little. I was aware I was their first patient, but not the first one in the world. I don’t know who I was trying to be brave for. Michael, my mom, Dr. Farr or even myself, but I just kept telling myself not to cry! So, a few chin quivers (after the 'first in the world' comment) then I said, "excuse me, I’m just a little nervous"... I also asked her what she meant by that, but a lot of it I wasn’t able to even retain because I knew it was go-time and I wasn’t backing out anyway. She did tell me that my robot was slightly different than those previously used in the sense that it was a single port (arm) vs multi port (arms) …. OK, not computing right now, lets just do this… I eventually learned more later on what all that exactly meant (covered in the why I chose robotic mastectomy section). I realize the irony that I apparently didn't realize that key factor going into all of this. However, I was was already confident in the robotic option. So, so be it.
Dr Haddock, my plastic surgeon, then had his turn. He also had me sign a consent form. Then it was time to mark me up! Whew, things were just getting more and more real. He had me stand up and drew with dark marker around my breasts to create a map for both him and Dr. Farr.
After this, the anesthesiologist team came in and introduced themselves. They were two quite young people. They gave me the anti-anxiety medicine I guess at that time - it was needed! I think I was about to spiral! I looked up and it was just about 7:00 am on the dot when they rolled me back.
I only briefly remember the actual operating room. The nurse told me she would take good care of me and they told me I had pretty eyelashes (aww, thanks!) and that was it! I would be asleep for the next 6 hours.
1st in the World
In the Hospital
Yay, I did it! The first thing you always do is check the time. It was about 2:00 pm when I awoke, so I was relieved because that timing made sense (about 7 hours after I was rolled back). Unfortunately, I was in quite a bit of pain and could feel it in my chest. A nurse struggled for 20+ minutes to get a pain pump secured, so that part wasn't great (same lady that did my IV, not a fan). After everything was finally settled my family was allowed to join me. Michael, my mom and dad came into the recovery room. I was very happy and relieved to see them! It was about 2:45 by this point. They said they were anxiously waiting to come back because my surgery had been done since around 1:00 pm. I was coming out of the anesthesia so of course some things were a little cloudy for me.
I was moved to my more permanent hospital room around 4:00 pm. We visited for awhile and then I finally wanted to take a peak at the girls to see what I was working with! I was nervous to take a look at first. They were quite bandaged up, and under that they were wrapped in some clear saran-wrap type thing. To my surprise, they looked nearly normal! Like my regular old boobs without much change at all! I was absolutely shocked! I finally felt a surge of ease. Everything was going to be OK. The incisions were on my sides just under my armpits. I couldn't see these just yet as these were more serious bandages, of course. I also had 4 drains. 2 on each side, coming out from my sides, below my breasts.
I was surprised at how good my appetite was; I ate everything! I still hadn't gotten up yet and it was nearly 9:00 pm and they said I had to try to go to the bathroom. I could not pee to save my life! This apparently was related to the anesthesia and narcotics, but it was a very frustrating moment for me. It was then that I finally had a breaking point. I had been strong and positive for so long. I never allowed myself nor did I simply have the time, opportunity or moment to sulk or be sad or hardly to be scared. Mostly that was a good thing. But this moment of weakness played a bigger role and had more meaning. It made me reflect that things may not be easy, this could actually be a hard road to recovery. Again, I never allowed myself (nor actually had the time) to really digest all of this to its extreme. I’d always known I was going to have this surgery. But, I never mentally dove into what it could mean. And, I also didn’t let myself think about how difficult it could be afterwards. So again, this moment of weakness was my first taste of reality. And, of course, I didn’t like it! I definitely didn’t like not being in control (of situations, myself and my body!) I had to sit there for a very long time. Crying a little, too. Quite the visual, I know. My most vulnerable and humble self. Michael could sense all this and was so very comforting. He supported me mentally and physically as long as it took to gather myself (and to pee). I needed that breakdown and to know that he was there and that everything was going to be OK. After that, I was ready to move forward and be strong… I mean, I successfully peed after all :)!
I was released the next day around 11:00 am, but as it usually goes, it takes hours after that, we didn't end up leaving until 2:00 pm. I hate to say, but my nursing team was really sub-par. That part was a real struggle; atleast for the important stuff I was confident I had two rockstar surgeons.
I was so excited to hug my two little girls Cora, 4 and Monroe, 2, and tell them mommy did it! We put a pillow in between my chest and the seatbelt and off we went. I left the hospital with 4 drains a prescription for Hydrocodone-Acetaminophen, muscle relaxers and antibiotics.
What I attribute to my easy and successful recovery was the support of my family and friends. This truly is what gives you the emotional strength that you need. My parents and in-laws stayed with us for a collective month to help with everything, taking care of me, watching over the kids and just the overall running of the house. A mom group I’m a part of, Fit4Mom, set up a meal-train for me. We had meals delivered for nearly the ENTIRE month. Others dropped by with muffins, cookies or breakfast, it was absolutely amazing. Of course, Michael was an outstanding support system, which you'll read throughout. I am so blessed to have had this love and support, truly.
I had so many family and friends checking in on me through phone and text. They sent flowers, care packages and cards. You don’t realize how much that means to you until you’re in a place of need. And to know people care and are thinking of you, really means a lot. I was so touched during all of this.
Michael was also so very sweet in helping me prepare before the surgery for anything he could anticipate that I’d need as part of my recovery. He got a big wedge pillow (see the Quick Tips section) that I could use to sit up further in bed. We got special mastectomy tops (has pockets for your drains), more pj's and robes, things to wear in the shower for your drains, etc. (some of this we found we didn’t need, but hey - you never know!) My parents and Michael’s were also so thoughtful to prepare me with pj's, magazines and other feel-good things prior to surgery. I definitely felt the love and all of it helped so much in my recovery.
I had quite a bit of energy that first day home. I was surprised how well I could get around. I was able to go upstairs; I was game to watch the Super Bowl (came home Super Bowl Sunday!) but I didn't have much of an appetite for all of the snacks. Things were looking up though!
Michael continued to be a fantastic nurse and supporter. There were several medicines we had to balance and time, especially for the first several days. We also had to come up with a schedule to empty my drains. He was so helpful in creating a schedule for me and ensuring I was getting all my medicine on time and drains emptied properly. That is something you underestimate at first, too. You are just not in the mental state to care about what to take, when and how and he really helped me with that. We determined we could empty my drains every morning and every night and it ended up being about the same time every day, which was also good for consistency. I had him empty my drains for the first week atleast, eventually I got the hang of it and had the mobility to empty them myself.
On Monday, my second day after surgery, was the roughest day. I think more of the aches set in at that point… but the biggest factor wasn’t necessarily the pain, but the by-product/side effects of taking the pain medicine. I was very mentally cloudy, nauseous, confused, and TIRED. I ended up getting ginger chews to help with the nausea. This somewhat helped, but not really. I felt like I slept the whole day. It was then that I realized, I’m going to see what it's like WITHOUT the pain medicine, going forward. I think all hospitals/doctors can do a better job of this… advising to see how you can handle pain after the first few days without hardcore pain medication. From both an addiction risk standpoint and overall healing standpoint. Its easy underestimate what your body is actually capable of handling. In the hospital/doctor’s defense, the medication does say take ‘as needed.’
This was also the first day I took a shower, which did feel very nice (hot water heater fixed, by the way :)). Michael did have to help me as I couldn’t move my arms too much. I was shocked I could take one so early, and was anticipating a much longer time (I’d read a lot worse from other blogs, like weeks!?). I was told I could take a shower 48 hrs after surgery. The hospital had attached my drains to a velcro belt, with 4 velcro loops that the bulbs attached to. I just showered with the belt on (vs a lanyard they also provide and suggest for showers). I found that it was more trouble to remove everything and I was given an extra belt, which I transferred to after the shower, to the dry belt. Both of my actual incisions were quite small. I hadn’t seen them directly yet as they were covered by a thin white bandage, about the length of the incision. This was considered waterproof. There was also waterproof tape all around where the drains entered my sides, so that too was essentially protected from the shower water. I found that I did live in button down pajamas for the majority of the first week.
By day 4/5 I just took ibuprofen. Things seemed so much better after this. I wasn’t as groggy or nauseous. Honestly, the pain was quite fine and at first I took ibuprofen on a similar regimen to ‘stay ahead of the pain’ but eventually tapered this off as well. I didn’t want to just be taking medicine to take it. And sure enough it was OK. From a mobility standpoint I could do quite well. I got around the house fine and didn’t want or need to stay in bed. Matter of fact, from here on out I was not in bed most of the time. I would still take naps but participated in mostly what everyone was doing (I also don’t like to feel left out). I did need a lot more help to get in/out of bed the first few days. It was hard to reach and hard to use my abdomen to get up because I guess it also requires a lot of chest muscles too? Another bummer thing that happened is I figured out a few days in that I was allergic to the antibiotic medicine that was prescribed. I had a horrible itch on my back and at first we just thought it was by chance. But, then Michael noticed bumps and something just didn’t seem right. I did some research and found it was quite common to have this side effect to the medication, so my doctor switched me to a different antibiotic. Great, dealing with all the regular discomfort and now an itchy rash on top of it! At least I could drink wine now, ha!
I did enjoy the relaxation elements over the first few days though. Michael would sit with me and comfort me and the girls would sometimes come in and cuddle and watch movies. I actually really enjoyed it! I even had my mom come in and watch Mary Poppins for a little bit with Cora and I in bed and it was sweet. So there were some good bonding moments. I was so worried that the girls would be ‘afraid’ of me… sometimes kids get scared of big boo-boos. But I always did my best to hide my drains and they never saw my incision band-aids (I did show them later). So thankfully that was never an issue and they were always very loving and supportive. I had a strategic plan about how to talk to the kids about all of this, which I outline in Quick Tips.
Day 6 was my first official day out of the house. Again, I’d been moving quite well within the house but it was time to feel some sunshine! Michael and I went on a little day outing to Torchy’s Tacos (one of our favs) and enjoyed some tacos, queso and a margarita (hey I wasn’t on pain meds anymore :)) It was lovely. We still used a pillow to protect my chest but everything seemed fine and went well. I had to find quite a bulky sweater to wear to hide my drains. Michael still had to help me get in and out of the car and buckle but I could nearly reach and do most myself.
For the most part I had good energy but did take my time doing things.
1st day out
10 days post surgery:
I was looking forward to this day as I had follow-up appointments scheduled with the plastic surgeon’s nurse, Tina (hoping to get drains out) and with Dr. Farr, the breast oncologist/surgeon. By this point, I had decent mobility in my arms, and could pretty much reach my arms all the way up. I was not regularly taking ibuprofen throughout the day anymore. Sleep was still iffy. I used the angled pillow and pillows under each arm and slept on my back. I’m usually a side/stomach sleeper so that was quite a change, as well as not being able to move all night did cause me to wake up at least once a night and would feel pain at this point. Because of this, I would take a stronger pain pill each night just prior to bed (acetaphetamine - codeine.) Other somewhat disappointing news was that I still didn't have most of the sensation in my chest. I could feel some areas around the perimeter and in between my breasts (which I’m not certain if that’s still the case for a regular mastectomy) but the hope with the robotic procedure was that nearly all feeling would remain. That was not the case. And let me tell you, that is one of the oddest things about this whole process.
Plastic Surgeon appointment:
I was able to take 2 of the 4 drains out on this day. Good news, but not exactly what I was hoping for. Nurse Tina confirmed that Dr. Haddock had said all went well and that she’d been told/seen a picture of the incision prior and were all shocked at the results. (my official appointment with Haddock was on Thursday, in a few days). Having the drains pulled out was not painful, but an odd feeling. And just like with everything else, the anticipation is worse than the actual act. So, they tell you to take a deep breath and then, boom, pulls them out. They are stitched into a small hole on the side of your stomach, so the stitching also has to be removed (which doesn’t hurt). What’s left is just a small hole… which she covered with a bandage, but believe it or not - it just heals on its own in a few days. Weird really, and not much maintenance there. They finally took the main incision's white bandage tape off (so I could finally see it!) it was stitched up with clear stitches as well as glue, but looked really quite well! She also removed the waterproof tape around all the drain holes (even the ones that were still in) which was helpful as these were really starting to become bothersome and itchy. I still had to keep up my drain recordings and emptying twice a day for the remaining two drains for almost 2 weeks before I get these out.
Dr. Farr appointment/Breast Surgeon/Oncologist:
This was a great appointment. Again, I had been looking forward to speaking with her all day, to get her perspective on the procedure. From the first time I’d met Dr. Farr I did feel a connection. I did really like her. And I think all of that led us to the path we were on.
So, as soon as she walked in the room she said, “Oh my gosh, I have been so excited to see you ALL day.” It was a refreshing thing to hear, actually. You automatically expect surgeons to sometimes act like robots or to be fairly non emotional (which also isn't fair), well that was not Dr. Farr. But in a good way, I found her honestly to be so refreshing.
So, I asked her how she felt about everything and how the surgery went from her perspective. She said it really did go great but that she’s glad this first one’s behind her! That’s again a little shockingly honest to hear! “I said, yea me too but gee, thanks!?” And she told me she really was quite nervous. Sometimes you forget to think of it from your doctor’s perspective (or atleast I somewhat did). She is the first doctor in the world to conduct the procedure, that is some major pressure! She told me she was unable to sleep the night before (ugh, that makes one nervous, glad I didn’t hear that, that morning!) Again, I flashed back to seeing her right before the surgery that morning and her distinct goggle marks on her face, so she had already been up practicing before 7:00 am, I suppose. She gave me a bit more context to the clinical trial and how she’d been working on this. Like I previously mentioned, I knew I was her first patient, but I wanted clarity on the whole first in the world bit that she shared minutes before rolling me back for surgery! She gave me more context to the robot type and FDA approval. The goal of the clinical trial is to have approximately 70 total patients which she estimated would take about 3-5 years. Once that’s completed, the trial will be reviewed by FDA for wider-spread use.
About 2 weeks prior to the surgery I was obsessively trying to research more about robotic mastectomies. I found a few previous US occurrences, these however were never approved by the FDA. I also found the statement by the FDA about not sanctioning these at all (released in Feb. 2019). This was a little scary, two weeks out from my own surgery BUT I knew the difference was that the FDA was on board this time, and that's what had me convinced to move forward. I had not known the nuanced part about the multi port vs single port, so that's why some of the information was a bit shocking! Again it was amazing to hear added context of the trial and the fact that I truly was the first in a way I hadn’t imagined. I’m glad in a sense I didn’t know all of this because it wouldn’t have changed my decision, but just made me WAY more nervous.
I did mention I would have lightening like, shooting pains within my breasts over the past week. She said this was normal and they were phantom breast pains.
She took a look at my breasts and seemed very happy with the results (as was I). I had overall good movement and minimal bruising. She did ask about sensation, and unfortunately, once again, I don’t have as much as I think she’d hoped either. So, that about summed up the appointment. We both hugged, she and Michael too. We agreed we were all a team (Haddock also!) It was a good closed loop for me (and hopefully her) and I look forward to following up with her more. I hope there’s more in our future. I hope I can somehow share more with others about this trial and get the word out. This site is a start!
Dr Haddock Appointment (13 days):
I had my first post-op appointment with Dr Haddock. I was anxious to hopefully get the last 2 drains out on this visit… but unfortunately, even though I tried to sell it, it was a no-go. They still weren’t ready. Have I mentioned enough yet what a DRAG these are?! Two atleast are a lot easier to hide under clothing (with that belt) than 4, though.
I also asked for his perspective on the surgery, hoping to get some lovely detailed story like Dr. Farr’s… well not so much. And, let me be clear, there’s nothing wrong with that. I too, felt a connection with Dr. Haddock and knew he was the right plastic surgeon for me as well. But, he is far more direct, straightforward and serious. I suppose it's a nice balance. He did confirm the surgery went smoothly and was roughly 5 hours. They thought it would take longer and also anticipated more hiccups (just by the pure fact that it was the first surgery) and there really weren’t any!
I did have a sharp pain deeper in my chest behind my tissue expander. I did ask about that and they said it was likely a suture attaching the tissue expander to my chest wall and that it was normal. So it was comforting in the sense that I knew what it was. I still would have this pain from time to time over the next week or so. They suggested using the muscle relaxers to help with that, which I hadn’t really been using up to that point.
The final step of this appointment was to do my first tissue expansion. At surgery, I was filled to 300 cc’s. I told him I wanted to be a small C, which would put me in the range of 420 cc’s. Expanders do look a bit different than actual implants as they push out more, so the actual implant size may even be different (like 450 ccs) to achieve the same look I would be getting from the expanders. They typically add 60 cc’s to each breast with each expansion, meaning I would need a total of 2 expansions. There are a few logistics around expansion; it has to be a few weeks after surgery (which I was) and no less than a week apart. I also needed to complete all my expansion 6 weeks prior to the implant surgery.
With this first expansion (of 60 cc’s) would put me at 360 cc’s each (a large B). I would just need one final expansion to get me to the 420 cc’s. I assumed with these expanders there was going to be some big crazy or ugly port somewhere. But there is not! The ‘port’ is located under the skin and they use a magnet to find it and bring it to the surface. They simply use a big needle to inject the 60 cc’s of saline right into each breast/tissue expander. The one benefit of no feeling in your chest is that you don’t feel the huge looking needle and liquid that’s about to go into your body! There is a sensation of pressure, especially towards the end as all of the liquid fills into the expander. They mentioned I would probably have some tenderness and pain over the next few days (which I did). I made my next expander appointment (also hopefully when I’d have my last 2 drains removed), pre-op appointment and official surgery appointment for my second actual breast implants. One expansion down, one to go!
2 week post op
We had a changing of the guard at two weeks out. My parents headed back home (to Kentucky). I was sad to see them go; I was getting pretty spoiled with all the help! By this point, I really felt fairly independent to do most things. However, I still had some limitations, mainly I wasn't supposed to lift anything for 4 weeks - that's pretty limiting when you have 2 kids that are 4 and 2! So, my inlaws arrived soon after to continue to support us through the end of the month.
I had my second nurse appointment with Dr Haddock’s office. At this point, I knew my numbers were solid for the last 2 drains to be removed (less than 20 ml total over 24 hours per drain)! I also wanted to maximize my time and get my final tissue expansion (the drive is an hour away, so may as well knock it out if I could). They’d told me previously it would be OK (this would be a week apart) but up to my comfort level. I was now up to 360 cc’s and this last expansion would put me at 420 cc’s - the small C. Yay, drains out and expansion in! It was definitely tight this time!! I felt the pain a little longer on this one and it lasted a few days. Towards the end of the week I developed a similar deep, sharp pain between my armpit and breast on my right side. I assume it's similar to the other deep chest pain (center/under right breast, which has now subsided) and related to sutures from the expanders and caused by the expansion and things shifting around a bit. It still comes and goes over the next week or so.
I was quite active within this week and resumed some smaller chores, started taking the kids to school with help (still no lifting) and again, was nearly my normal self! At 3 weeks out, I went to the gym for the first time and did the elliptical and stair climber. Both felt fine and it was nice to get some cardio going again! I had asked my doctors in advance if this was acceptable and they agreed. I also did light weights.
2020 was a special year for Michael, too (again this is pre COVID)! It’s a Leap Year and his birthday is February 29th! So, we got to celebrate his actual birthday this year. We received a very special treat from his parents and the opportunity to stay in Dallas for a night at the fancy Statler hotel. It was a much needed retreat for both of us! We enjoyed the rooftop patio, a nice dinner and dancing!
My incision nearly 2 months after the procedure. That's it, only 1.5 inches on each side. The marks below (at the 3.5 inch mark) are the scars from the drains. These have since substantially faded. These same incisions were used again a few months later for my second breast implant surgery in May.
I'm happy to share more detailed photos of my progress to those that are researching for their own mastectomies. These are available, as are other mastectomy photos on the FORCE website as gated content. See more about FORCE in Quick Tips.
4-6 weeks / In Summary
Things moved along quite well. I was done with my expansions, I had my second surgery scheduled for the implant exchange, I was able to lift my children again and exercise. All was well and life pretty much resumed to normal (well except for COVID-19). Holy cow, I'm so grateful all of this happened prior to that!
Overall, the tissue expanders are quite an odd feeling. I told the doctor it sometimes feels like I’m not in my own body. They are very hard to the touch and just feel tight. When you push on them, I can feel the pressure from the inside but do not have sensation on my skin/outside of breast/chest area. It feels odd to hug people and sadly to hold my children. I feel like there is this big block or barrier in front of me. I'll sum up the second surgery later, but it does feel a bit more 'normal' with implants. it will never be the same, but it will always be better than any alternative and something I’ll just have to get used to.
I am very pleased with my breast size and look. From an expanders standpoint, they are more outright and less settled into the body so it looks a lot more ‘fake’ and quite risque (to put it nicely)! My doctor also assured me that the implants will have a slightly more natural look, which is what I’d prefer (spoiler alert again - they do look much better!). The incision has healed nicely by this point; it took some time for the glue to come off. The stitches are/were clear and dissolve on their own. I’d also asked at that time about using over the counter scar cream; he told me to wait as he’d be using this same incision to insert the implants, so I will use that after the second surgery is complete (also detailed later).
I’m happy its behind me. The recovery was honestly easier than I expected both physically and emotionally. There were of course some difficult moments here and there. There still are some sad moments when I actually have time to reflect (it's tough with these kids and with company - a good distraction), when I realize that it won’t exactly be the same. The loss of sensation is very odd. But that sacrifice was absolutely worth it... for me. I’m so glad that I don’t have to worry anymore, I’m so grateful I was given the opportunity to have this advanced surgical technique. I think my breasts look fantastic and I know they will only improve from here - that has also probably helped with the recovery as well. Honestly, the anticipation of it all was harder than the actual surgery and the past month had been. Like I said earlier, I will actually look back at this time with positivity. I enjoyed spending time with and being surrounded by family and love.
This process does require patience. It will be the better half of the year, if not the whole year until I’m ‘done’ with it all. But once again, I’m only looking forward and not back.
My goal is to be a resource and a voice. I want to help others by sharing my story because I read other people’s stories and it helped me so much. Even the smallest of details. Once again, the anticipation is the hardest, so the more you can learn from others hopefully the more ease you will feel.
Surgery 2 - Implant Exchange/Fat Grafting
COVID-19 sure did shake things up a bit. I was originally scheduled to have my exchange surgery 3 months after the initial surgery (June 1). I could have had it slightly earlier, but had had a trip planned. Well due to COVID, that changed and the trip got cancelled. So, fortunately, I was able to move up my surgery to mid-May. Thankfully the hospital was still able to conduct this surgery! I was relieved, as it's not fun to have tissue expanders, so the sooner I could get those babies out, the better!
This surgery involved 2 elements:
Removing my tissue expanders, that had stretched my skin to the appropriate size, and inserting an approximate 450 CC size C silicone breast implant.
Fat grafting - liposuction of my abdomen area and using this fat to supplement tissue on top of the implant. Because there is no longer breast tissue, it is easy to see the actual implant (and its rippling) through the skin. This added fat helps to minimize this.
Unfortunately, the limitations are similar and I was not supposed to lift anything for another 4 weeks. I had to ask my parents to come back once again to help. They were so gracious to support once again, especially given the deteriorating environment of the nation due to COVID.
This is an outpatient surgery and takes roughly 2 hours. Such a stark contrast to the previous that I felt like this was going in for a check-up. So, the big positive is that I wasn't nervous at all... after what I had already been through, this was nothing. Well, kind of :).
Post Surgery 2
Surgery 2 Details
Immediately After Surgery:
The hospital didn't keep me long at all! My surgery was scheduled for 9:00 am; I believe I was on my way home by 1:00 pm! I was quite groggy waking up this time and remember saying that I wanted to just sleep longer. Apparently they were trying to get Michael and get me the heck out of there but I wasn't into it! As soon as I woke up though, I could immediately tell my breasts were more comfortable. That was a good feeling. They had provided me with 2 compression bras and had secured 3 sections of foam to my abdomen and a wide ace-bandage-type compression wrap around that. I was to wear this until atleast my 2 week follow-up appointment. The doctor had warned me the worst part of my recovery would be the lipo not the breast implants, and that proved to be true.
The doctor had also mentioned the fat grafting would have some lumps at first (I think), but apparently that did not register. When I got home and started to look at my chest, I was a little freaked out. I did message the doctor and they assured me all was normal (see picture). The fat would start to dissolve into my body over the next month or so. These lumps actually seemed to subside within the first couple of days.
I was still recovering from the anesthesia the better part of the day, and slept quite a bit when I got home as well. I tried not to use the pain medication as much initially this time knowing my experience last time and just saved it for going to bed.
I seemed to feel pretty fine regarding pain and just used ibuprofen. However, that was not enough to get good sleep so I would take a stronger dose before bed. I was also able to shower the 2nd day.
I had lots of areas of no sensation on my stomach/abdomen area from the liposuction. I kept the compression garments on religiously, so I did not even see it that much, however I had some pretty severe bruising. Most notably on my sides and in my belly button. The lipo incisions are below my bikini line, one on each side, very small dots.
My original breast incisions are bandaged but appear to be about the same size. I was really disappointed with an additional incision I wasn't aware I'd be getting from the fat grafting. On one breast (top, just off-centered toward arm) there is a minimal dot where the fat was added. The other breast, however, had about an 1 cm incision in the same area (off centered above breast). I wasn't expecting anything additional and this seemed oddly large. I did ask about this in later appointments but didn't really get a solid answer. My breast surgeon also noticed and was disappointed with this incision too!
I ordered additional compression garments to ease with washing and overall management (see Quick Tips). I had minimal bruising but felt like the overall healing was at a good pace.
Nearly all of my bruising is gone. I started to get a stinging pain in lower abdomen especially in the early morning just waking up from sleep. The incisions are all continuing to heal nicely and I am no longer taking any medicine. I walk everyday. My sides still have some hard lumps (to the touch) but not really visible and there is a small ridge/bump right below belly button.
2 Week Post-op Appointment:
My appointment was with the nurse, not Dr. Haddock. The lower abdomen pain I was experiencing was considered normal and nerves just “waking up”. I was shocked to hear that the ultimate healing time for liposuction is up to one year (to retain sensation) and the swelling remains for 3-6 months. Liposuction is far more invasive than I had realized. I asked about some of the lumps/bumps and she instructed me to begin massaging these to help minimize but this is also part of the recovery process. She also said I should wear the compression garments for total of 6 weeks (a month more total).These things are a killer to wear in the Texas summer.
She also said that the fat grafting looked good but could still see some potential “hollowing” in some areas (right breast chest/center and left breast on left side by armpit). Another round could be considered in 3 months (I had an 8 week follow up appointment with Dr Haddock to review further). The incisions do look nearly healed but there was still a lot of glue. She also confirmed I could still not exercise or lift until the one month mark (oops, I have had to lift Monroe several times).
At 2.5 Weeks my bruising is nearly all gone.
My incision wounds are essentially closed. I also worked out for the first time, on the day! I had walked frequently to date, but was ready for some cardio (had advised not getting heart rate over 100, prior). The workout went well but I was still reserved to not do push-ups or any crunches. Overall, things look very good. The swelling has reduced significantly, the bruising is gone and I was starting to get a sense of the new me. It's hard to get a sense as you're wearing the compression garment all day/night! I also started using the scar cream now that my wounds had healed. The office had also suggested scar patches (New Gel) so I wear these every evening and use the gel throughout the day (also included in Quick Tips).
All restrictions are now technically lifted. I can work out (4 weeks) and no longer have to wear compression garments. However, I decided to continue wearing these until my official follow-up with Dr. Haddock (at 8 weeks). I have felt able to do everything for about 2 weeks (4 week mark). I did crunches without a problem. The scar cream and scar bandages appear to be helping. My stomach is looking better in terms of less ridges. There were knots on my sides that have now gone down. Sensation is better but still odd in some places.
I finally meet with Dr. Haddock. Overall, we're both happy with the results. I can stop wearing the compression garments. However, still wearing them from time to time won't have an impact on overall results but could help with any other minimal swelling that might remain. He also said I could probably use another round of fat-grafting, if I was game. I mentioned I was planning to do the Fallopian tube surgery. During this period I had met with Dr. Farr for a regular follow-up as well, and she had urged me to do this. So, again, based on having met my insurance deductible and the fact that I could use another round of fat grafting both the Fallopian tube surgery and fat grafting surgeries seem to justify themselves.
Fat Grafting - same day as procedure. This eventually disolved and looked much better, soon. Roughly only 50% of the fat that is placed, lives and is useful.
Cora and I enjoying some lake time this summer (August 2020). Things have nearly all recovered now. However, I plan to have another round of fat grafting later this year.
Surgery 3 - Fat Grafting/Fallopian Tube Removal
Well, now I feel like an old pro at this. My 3rd (and hopefully final surgery) was scheduled for October.
This surgery involved 2 elements:
Fat grafting - liposuction of my thighs area and using this fat to supplement tissue on top of the implant. After the first round there were a couple of areas of hollowing and ripples.
Fallopian tube removal - my previous two bikini-area incisions from abdominal liposuction were used in addition to my belly button to have this removed. Fallopian tubes were also sent to pathology to ensure no signs of cancer.
This would be conducted by two different surgeons. My plastic surgeon, Dr. Haddock, as well as my obstetrician surgeon, Dr. Carlson. The decision to remove my Fallopian tubes was another step towards minimizing risks where possible. My doctors didn't quite agree on the necessity, however I felt that while I was on this journey I may as well do what I can. My breast oncologist firmly recommended it, she had sited some emerging research and basically posed the question as what's the harm in doing it vs not? I tended to agree. My obstetrician oncologist said there was not yet firm research to solidify that removal helped, but he was happy to oblige if that's what I wanted.
This was yet another outpatient surgery and took roughly 2 hours.
Post Surgery 3
Surgery 3 Details
Immediately After Surgery:
Similar to the last surgery, I was kept in a post-recovery room for a few hours, and due to COVID, had to do this alone. That's a bummer. I was given another compression bra and 2 compression pants for my leg area.
I had less lumps this time from the fat grafting, they seemed to blend better. Similar to past experiences, I watched the prescribed meds more closely. I've come to a conclusion that Tylenol 3 is just not a good pain relief option for me. It just puts me out and makes me nauseous. So, I kept on a ibuprofen regimen and took stronger meds before bed.
It's amazing how it takes a few days for the bruising to show up! I was impressed that the same incisions (bikini area) could be used for the Fallopian tube removal, in addition to my belly button. Most of the pain was in my legs from this lipo. In order to minimize yet more incisions in my chest, Dr. Haddock inserted the fat in the tops of my nipples, so you essentially can't even see this incision. They look great!
Similar to the last surgery, I had lots of areas of no sensation in my legs from the liposuction. I kept the compression garments on religiously. Unfortunately, I developed a crazy itch on all of my incisions and came to realize we think I was allergic to the skin glue this time (not sure why it didn't affect me last time.) However, that is the only thing the doctors and I could come up with. It turned quite red all around each incision and it was insanely itchy! I could put some cream just around but otherwise couldn't really touch it and took Benadryl. The bellybutton 'incision' was the worst. It was covered by the compression garment and also an unnatural place for a wound so it was quite gross for a bit, getting through the reaction.
The leg bruising really showed up after a few days. Wearing the compression garments are a lot easier in the fall!
I had minimal bruising but again the overall healing was at a good pace. However, I started to develop itching everywhere, what the heck!? I developed hives all over my body!? Again, both surgeons teams really couldn't determine the factor. It took a few days to finally subside. They were everywhere and very itchy! I started wearing my own version of a compression garment and just wore yoga pants. The hives subsided after 3 days.
Nearly all of my bruising is gone. I had my follow-up appointment with Dr. Haddock. This version of liposuction seemed much easier this time (despite the odd allergic reactions). My legs really never seemed to swell. I was told I should wear the compression garment as long as there was swelling and/or it just felt comfortable for me... I essentially was just sore, but still overall 'comfortable' and didn't notice much swelling. So I stopped wearing 'yoga pants' religiously at this point. A stark contrast from the last surgery (8 weeks!) I will have a 3 month follow-up appointment with Dr. Haddock and after that, our time has essentially come to a close. Bitter sweet, I suppose.
The fat grafting looks good and seems to have helped with the areas of concern. The bruising was all gone at 2.5 weeks. My incisions healed at 4 weeks but one bikini incision still has clear stitching that has yet to dissolve.
I worked out (possibly a littler earlier this time) but felt great to do so. There was not as much trauma to my chest and my legs were not sore after about 2 weeks. From time to time, I can feel some subtle pains in my abdomen from the Fallopian tube surgery, but nothing too drastic. The post-op recommendations from that surgery advise not to lift anything over 10 pounds for 6 weeks. Well, I've been through worse and quite honestly just couldn't manage that with my 2 year old. So I only limited that for the first week, while my parents were in town to help yet again (God bless them :))
So, that's it! If you made it this far, I'm impressed! Thank goodness this long journey is over!
But, again, hopefully if anyone is going through this the slightest of details will help ease your mind by providing you with some expectations. This blog/website has also been a very cathartic experience.
I have connected with FORCE, they plan to publish a blog/abridged version of this website. So stay tuned!
I'm very happy with the results. Sure, there are things to pick at here and there, but in all honesty, I think my body looks better than it did before! I am forever grateful to my surgeons who took such great care of me.
There are definitely some sacrifices to this, but if I put it into perspective about what I gained in terms of no longer worrying about my risk of breast cancer, that is priceless.