My Experience With a Double Mastectomy With Immediate DIEP Flap Reconstruction and Revision Surgery 3 Months Later
I want to put this out there for girls or women that are in my position. I had found a lot of very helpful resources online when I was doing my research and I wanted to put this out there to help others. If documenting my experience can help those of you who are going through what I went through, or even worse, that makes me feel just a little bit happier.
My story began in early 2015, when I had a double mastectomy with diep flap reconstruction in a single operation. I decided to have this procedure due to reoccurring large fibroadenomas. I did not have breast cancer, wasn't BRCA positive and breast cancer is not common amongst my family. For those of you that are not familiar with fibroadenomas, they are noncancerous breast tumors and are most common in women between age 13-30. Doctors are not exactly sure what causes them, but they are believe to be influenced by hormones and puberty. Most women will have a least one fibroadenoma in their lifetime, but won't know it until they have their first mammogram. It also not recommended to do anything about these tumors unless they grow to be at least 3 cm. For tumors 3 cm and above, it's advised that you have them surgically removed.
Prior to considering a double mastectomy, I had 2 fibroadenomas removed. 1 was removed during my sophomore year of high school and another was removed during my freshman year of college. When it was discovered that I had 5 more fibroadenomas, ranging in size from 2-5 cm, I started looking into more drastic surgical options. It wasn't that my tumors hurt, although I was able to feel them if I was tender one day, but they were uncomfortable and even though you're not at a higher risk of cancer if you have them, they do make it harder for cancer screening equipment to detect breast tumors behind them. I should also mention that my breasts were not fibrocystic.
This is where my story went on a little bit of a tangent. My original surgeon, whose name I've decided to leave out because I was not completely happy with her, told me that at 21 I was too young to even think about getting a double mastectomy. She urged me to continue having my fibroadenomas surgically removed. But, I was only 21 and did not want to keep coming back to have surgical procedures to remove them. I also did not want to continue having all sorts of scars on my breasts. I did not want to look deformed from having bits and pieces of my breast tissue removed. I wanted to be able to wear a bikini again and feel good about my body. For that reason, I sought out another surgeon -- Dr. Jennifer Manders. Dr. Manders is a surgeon at Christ Hospital in Cincinnati (Where I had my surgery).
When I went to Dr. Manders office, diagnostic tests showed that I actually had 6 fibroadenomas. The technician was able to find an additional tumor that my previous doctor was unable to locate. Dr. Manders carefully laid out the options of what I could do and told me about the different types of mastectomies. Here were the options:
Modified Radical Mastectomy: This is not a skin-sparing procedure. You might, depending on your size, have a lot of skin removed. All of your breast tissue, including your skin, areolas, nipples and lymph nodes are removed all the way up to your armpit. This is the most common method of treating breast cancer or patients with a super high risk of getting cancer (otherwise you wouldn't need your lymph nodes removed).
Simple Mastectomy: All of your breast tissue is removed, including your nipple, areola and skin, but not all of your lymph nodes are removed. Only certain ones are taken out.
Skin-Sparing Mastectomy: This type of mastectomy preserves all of your breast skin except for your nipple and areola. This procedure leaves you with a scar that comes from your armpit to your areola. It's supposed to limit the number of scars you have on your breast, leading to better outcomes after your breast reconstruction.
Subcutaneous Mastectomy: This type of mastectomy is skin-sparing and your breast tissue is removed through an incision placed underneath your breast (a location commonly used for breast augmentation). This procedure allows you to keep your nipple and offers a good a cosmetic result.
Nipple Sparing Mastectomy: This is a mastectomy that allows you to keep your nipples. You have to be very small for this procedure to work for you. This is because your nipple needs to retain it's blood supply and if you have larger breasts, your nipple is too far from that supply to keep it alive during surgery. I was a DD breast size, so that was not an option for me.
You don't need to have a double mastectomy either. You can have a single mastectomy too. If you're doing a prophylactic mastectomy, you're probably going to go with a double mastectomy. This is what I needed to do for my surgeries to be a success.
There are two primary breast reconstruction surgery options: implants or a flap (your own tissue). A lot of women choose implants because the initial surgery (4-5 hours) and recovery is shorter than a flap procedure (8-9 hours). The problem with implants, is that you come out of surgery flat. You're given temporary implants with tissue expanders and have to return to your doctor to have them expanded until you get your permanent implants. I didn't choose this option for several reasons:
1) I'm overweight - I weigh 195 pounds and I had fat that I wanted to put to use.
2) Implants have to be replaced every 10 years because they get hard (calcified) and can potentially leak. I didn't want to keep having surgeries.
3) Implants don't feel as natural as your own tissue. Women who have them also complain of their implants feeling cold during the winter.
4) The initial procedure time is shorter, but getting implants is a longer process than having reconstruction immediately with a flap.
5) Flaps + fat transfer gain and lose weight with the rest of your body. Implants do not change size.
There are further options when it comes to the type of flap you want too. You can do an attached flap transfer (example: TRAM flap), where your blood supply remains attached when tissue is transferred, or you can do a free flap, where your blood supply is completely disconnected when the tissue is transplanted from the donor area to the recipient site.
I chose to have a double mastectomy with immediate DIEP flap reconstruction. My DIEP flap used stomach skin and fat freely (not attached to blood supply). I chose to have a DIEP flap because it's a perforator flap, which doesn't compromise your abdominal muscles. I’m only 21. If I ever have kids, I don't want to worry about carrying my kids because of damage to my abdominal muscles. Not compromising my muscles also allowed me to exercise normally, which was important to me given my weight. Besides, my surgery looks like I had a tummy tuck, which I can't complain about! My incision was from hip-to-hip and very low. This allows me to wear shorts or a bathing suit.I got the lollipop incisions, not the nipple sparing.
My surgery was scheduled for 9:30 am Wednesday and I had to be at the hospital by 7:30 am. When I got to the hospital, I had to pee in a cup to make sure I wasn't pregnant. Fortunately, I was not.
Then I got changed into a gown, my surgeon came in and marked my breasts with a sharpie. He didn’t mark my stomach. He said they would mark my abdomen once I was in the operating room. After that, my anesthesiologist came in to see how I was doing. Like most patients undergoing surgery, he prescribed me a calming and anti-nausea medication. The nurses then came in to give me a few injections to calm my nerves.
I went into surgery a little early. I went in at 9 am and don’t remember waking up until 6:30 at night. My mother and boyfriend had met with all of the surgeons who had operated on me by the time I got up. I woke up in a post-op acute care room, where they make sure you’re coming out of anesthesia ok. Then you go to ICU.
I was really nauseous after my procedure. You can’t eat or drink anything after surgery for 24 hours. I couldn’t talk because the anesthesia tube had irritated my throat. My throat was so dry. Thankfully, I didn’t throw up even though I was nauseas. This was great, because the nurses check to see that you're not vomiting before they let you eat.
At around 7:30 pm they took me up to my room, where my boyfriend and mother were waiting for me. I remember being mentally there, but my family said I didn't speak.
The first 24 hours after surgery was very difficult. I assure you that you’ll have the same issue I had too. I was so sleepy that night. I didn’t want to speak with anyone. For every hour you're under general anesthesia, it takes up to a day for your body to bounce back. I was also very thirsty and they couldn't give me water. They had these swabs that they dip in water and wet your tongue with. You have a pain pump, where you can press the button whenever you need it. It only lets you push it once every 20 minutes or so. I never really needed to push it because I was asleep. When I did wake up, I would push it and go back to sleep. The nurses also gave me a Q Ball pain management system (through two IV needles in each side of my stomach) that constantly provided local anesthetic to my stomach to prevent me from much pain.
For the first night , every hour on the hour, they wake you up and do a doppler test. Where your areolas were, they have these little egg tabs attached to wires, which connect to a monitor. Then they had an ultrasound device and would check my blood flow. They say the period where you have the highest risk of failure is within the first 24 hours. Thankfully, my breasts were fine the whole way through.
I didn’t get out of bed until the following morning. That was my goal for the next day. I was nervous about it because I knew it was going to be hard. My nurse came in at 10:30 am, not even 24 hours after my procedure. Make sure your nurse puts your bed up as far up as you can handle it. Everything is going to be very tight and you won’t be able to take deep breaths. Shallow breaths and you need to take things very slow. You don’t want your heart rate to go through the roof. Your nurse should put a pillow under your legs to keeps your hips flexed and not stretch your stomach. I was only 21
My skin was so tight after surgery because I never had kids. For that reason, I needed to stay bent over. I didn't want to stretch my skin. Your back and tailbone will hurt from being bent over so much, but you have to. You need to scooch on the bed. No pulling or pushing with your arms. You don’t want to damage your incision areas or the tissues and vessels underneath. It’s really hard to do that too, because you're so used to using your hands and feet to push or pull yourself. What I found very helpful, is that when I wanted to sit up, I would scooch to the edge of the bed and then I would have someone hold my back and push me up a little. Your back is fine, you just can’t use your arms or ab muscles. I would turn on to my side as I sat up. Sitting up is one of the worst things when you’re recovering. You can’t move well by yourself.
I had my first surgery post-op visit around noon the day after surgery. I wasn’t hungry, but knew I had to eat a little bit. I knew the medicine I was on would constipate me. I worried I wouldn't be able to have a bowel movement. I made sure to eat a lot of healthy food in the hospital. I drank Sierra Mist for nausea and ate fruit cups. I drank a lot of water too. Every time the nurse asked me if I wanted water, I said yes. Friday night into Saturday and Sunday I walked. It was really painful. I used my IV pole to walk a bit. They say the more you get up and move around, the quicker your digestive system will get back to normal and your body will recover. It’s so hard because you have to go slowly and you can’t catch your breath very well. Just walking around the nurses station was very hard.
I had my catheter taken out on Friday morning because I was able to get out of bed and use the bathroom. This is also very hard. Squatting onto the toilet is very hard because you can’t use your abs much. It hurts. My pain pump was also removed and I was switched to Percocet.
My Q ball was removed on Sunday morning before I was discharged. I didn’t notice much of a difference when I got rid of it. The nurse had warned me before my Q ball was removed that people feel a significant amount of pain without it. I did not have that issue.
Going home was pretty ok. I used microbead pillows, which I highly recommend buying. They’re cushy, moldable and squishy. I put one on my chest to protect me from my seatbelt. We have a lot of pot holes on the road where I live. If we hit a bump or if my boyfriend had to hit the brakes, the microbead pillows protected me.
When I got home, I slept on my couch, which is tough. I slept with my back on the side of the couch and I placed pillows behind my back and under my legs. I was in a position where my hips were flexed and my stomach was flat.
The first week home was very difficult. I didn’t want to move and I was very cranky. I was also out of it. I was sleeping for 12 hours straight and taking pain medication during the time I was up. I watched all 9 season of How I Met Your Mother. I was going out of my mind not being able to do anything. My doctors had given me a 10 pound weight lifting limit for 4 weeks post-op. My boyfriend needed to do everything for me and someone’s going to have to do everything for you too. You can’t do dishes. You can’t do laundry. You can’t lift anything. The heaviest thing I lifted was a 32 oz mug I have. I used it to drink a lot of water. Make sure some one is home to take care of you.
I also had a spirometer (breathing machine) while I was home. When you’re very immobile, they want you to use it once an hour, ever hour and you do 10 breaths on it. The goal during the first few weeks was to move at least 3 times a day - to go to the bathroom to walk around your house, etc.
I didn’t start feeling better until 7 days after surgery. Mentally, I started feeling happy. 9 days after surgery, I had my first set of drains taken out. One under each arm pit and one on each hip. I had both breasts and one stomach drain removed. The drains that were removed were putting out very little fluid.
Two weeks later, I had my one remaining drain removed. My next appointment after that was 3 months later. I was allowed to go back to work 5 weeks after surgery. When you decide to go back to work is really up to you.
For part of your recovery, you’ll need to wear a compression garment. You need to wear it as much as you can. I had a tummy tuck compression garment and it was really comfortable to wear. It felt good to have everything stuffed in. Your stomach feels very hard, stiff and swollen and this garment helps with that. I also needed to keep my chest compressed. I wore a surgical bra for longer than I should have because it acts as a compressor and when I went to Dick’s Sports Goods, I couldn’t find a sports bra that fits comfortably. I also got some blisters around my incision site.
I drove around the 6 week mark and I did a little bit of exercise after 4 weeks and returned the gym full-time after 8 weeks. Around the 2 month mark is where I felt completely normal.
My doctors would not do my revision surgery until 3 months after my initial procedure. They wanted to give my tissues the full amount of time to heal.
After my first surgery, my breasts weren't symmetrical. My right breast had a divot in it from my flap shelving out. I also needed nipple reconstruction surgery because my lollipop incision had left me with a flat areola and no nipple.
My revision surgery was much easier than my first surgery. It was done as an out patient procedure. Just like all surgeries, I had to do a urine test (unless you’re over 55) to make sure I wasn't pregnant. I put on the fancy gown and fancy socks. The anesthesiologist came in and measured the space from my reconstructed areola to my chest. On my stomach, I had a spot. That’s called a corn deformation. It’s super thick scar tissue that was caused when my skin split while it was healing. They fixed that too. They also did some fat grafting to my divot. Fat from my love handles was transferred to my chest with liposuction. I went into surgery around noon and woke up around 3:15. It was not nearly as hard to come out of anesthesia as last time. I was so groggy the first time.
When I woke u, I was in a soft bra. I wore that until a few days after surgery. I was able to get out of bed by myself too. I was allowed to have crackers and Sprite shortly after surgery, unlike my first procedure, where I waited a full day before I ate or drank anything
For pain, I had a Vicodin script. I only used 3 out of the 10 pain pills that were prescribed to me. My dosage was once every 4 hours, so I only took 12 hours worth of pain medication.
Recovering from my revision surgery wasn’t painful. I felt the most pain in the morning, likely because I slept a bit different than usual. Bruising from the liposuction on my love handles was the worst part of reovering from this procedure. My chest was already numb, so I didn't feel pain there, but I did experience some itching from the steri strips becoming. Stuck to my bra and upper chest.
Conclusion of My Double Mastectomy With Immediate Reconstruction and Revision Surgery
Before my surgery, I was a DD breast size. At the time I'm writing this, it's been 6 weeks since my revision surgery and 4.5 months since my initial surgery. I still need to have my areolas tattooed, but I am happy with my breasts and nipple reconstruction. My reconstructed breasts don't move exactly the same way my natural breasts did because they're much harder, but they feel warm like real breasts do (not cold like implanted breasts).
It feels weird to be near the end of this journey, but I'm glad it's over. I wish all of you who are going through a similar journey all the best.
Breast Surgeon: Dr. Jennifer Manders
Plastic Surgeons: Dr. Ergun Tiwari and Pankaj Kocak of Midwest Breast