Bilateral Mastectomy and TRAM Flap Reconstruction: 11-Month Update
My Video Update
It's Now Been 11 Months...
It's been nearly 11 months since I had my prophylactic bilateral mastectomy and TRAM flap reconstruction, and I'm happy to say that I'm doing pretty well. Gosh, that actually sounded uncharacteristically optimistic. But really, health-wise, I’m okay (I'll say "kenahora," which is my grandma’s way of saying “knock on wood,” but I’ll refrain from spitting three times, which is supposed to help chase away the evil eye).
I want to share with you how my recovery has been progressing. I'll go through a list of different issues and let you know what I've been experiencing. In some cases I've found ways to mitigate the issues, and if I have I'll let you know.
At the end of this article I've included a number of comparison photos. There are some "before" photos (pre-surgery), as well as post-surgery photos from a couple of different points. One set of post-op photos was taken just 2 weeks after the procedure, and the other set was taken very recently, close to the 11-month mark.
A final note before we continue about medical terms. The acronym TRAM stands for "transverse rectus abdominis," and it refers to the abdominal muscle that's located between the waist and the pubic bone. In a TRAM flap reconstruction, the surgeon takes some of the skin, fat, and muscle in this area and uses it to reconstruct the breast.
Now that we've covered all of that, let's begin talking about how my recovery has been going.
In months 5 through 7 after my TRAM reconstruction, I noticed a strange development: a phantom effect. People who have amputated limbs sometimes experience phantom limb syndrome, and I feel like something similar has happened to me. I wonder if other women who have had mastectomies have felt this, as well?
My new breasts feel numb, and I no longer have nipples—but sometimes it feels like I still have nipples. In certain conditions (cold, arousal, etc.), it feels like they are responding. Even if I run my hand across the scarred mound, it feels as though the nipple is reacting.
Moreover, even though my breasts were gutted during the surgery, I still sometimes feel the “let down” sensation that occurs when women breastfeed. Even years after I stopped nursing my children, I still sometimes experienced this sensation—and the reconstruction surgery didn't seem to change that.
Itchiness and Stabbing Pains
For a few months, I went through a period of intense, periodic itchiness. Even though my stomach and breasts are numb to the touch, paradoxically, everything felt itchy. Unfortunately, scratching my numb skin didn’t relieve the itchiness. It was extremely frustrating not to be able to relieve a deep, itchy feeling that wouldn't go away.
Those deep itches have mostly disappeared by now, but they return periodically with a vengeance. They are also now sometimes accompanied by sudden, sharp stinging sensations that the plastic surgeon said could mean the nerve endings are trying to heal or reconnect.
My scars are still red/pink, but they are not as dark red and knobby as they were several months ago. The scars have mostly flattened out after massaging a cream into my scars every day after my shower for a couple of months. (I use Neutrogena hand cream, which is more like a serious ointment than a cream.)
As the skin around my scars has relaxed, I've noticed something odd with the appearance of my abdominal scar. One end of this scar, in particular, seems to have bunched out from where the stitches were. If you’ve ever done any sewing, the end looks sort of like a corner seam that doesn’t quite lay flat. It’s not noticeable when I'm wearing clothes, but it does look like a chunk of skin that flows out from the side.
Sitting Up Straight and Stretching My Arms Up
After the surgery, I couldn't sit up straight without pain for several months—but more recently I've been able to do so without trouble. Even so, I still feel a tightness in the muscles that run from my stomach up to my new breasts.
If I try stretching my arms up too high, it feels like a spring that has been stretched a tad too far. Pain strikes sharply in the muscles, and I must quickly hunch over to avoid experiencing more than a few moments of lingering pain.
Lifting is still an issue for me. Once in a while, I’ll try picking up something that might be just a bit too heavy, and the newly-placed muscles will snap. It feels like someone has reached inside my stomach, grabbed hold of the repositioned muscles, and wrenched them—causing me to bend over in pain.
I've learned that when I am preparing to lift something, I need to make sure I am facing the object. If I try to twist my body around to the side to pick something up, it hurts a lot.
Standing Still or Moving Too Much
Somewhat surprisingly, standing still for longer than a few minutes is difficult and tiring. If I’m moving, I feel okay, but standing in one spot for too long can be exhausting. I can feel it in my abdomen and up through my torso.
Conversely, if I’m moving around too much—whether I'm exercising (e.g., hiking up hills) or whether I'm just trying to get a lot done in my regular, everyday life—my stomach muscles will begin hurting and tugging, causing me to hunch forward due to the discomfort.
Going From Sitting to Standing
I've noticed an interesting issue that arises when I go from sitting to standing. I like to sit with my feet up when I watch some television in the evening. I have to be careful, however, not to sit on my side; otherwise, when I get up, I'll feel the stomach muscles pulling painfully. Or if I'm sitting at my computer in the kitchen, when I get up from my chair I have to take a long time in order to avoid pain. I look like those museum cave men who take a while to rise to an upright position.
I've learned that when I go from sitting to standing, or otherwise changing my position, I need to do it slowly. I need to allow my muscles time to adjust in order to avoid pain.
Another strange thing I've noticed happens when I lean over at the waist. Although my belly fat has mostly been removed, I've noticed that when I lean over the muscles start bunching up inside. It feels as though I'm wearing a fanny pack in front and I'm trying to bend over the trapped pack. I feel the muscles repositioning and trying to find a comfortable spot. It's a very strange feeling.
Sleeping is still an odd experience with regard to my stomach scars. I have to be careful about how I turn over from side to side. It takes more care than it did prior to my surgery, which means I tend to wake up more than I used to at night. If I turn the wrong way, I feel my scars tugging. Sometimes it feels as though they will rip open—especially where the scars end, at my hips.
I find that it's best to try to roll over as a single unit instead of rolling, for instance, legs-first with the upper body following. When I turn in stages, the stomach muscles stretch too much, which causes pain.
Coughing and Sneezing
Coughing and sneezing are still painful for me. The swine flu swept through our home last fall, and I learned that coughing is not at all easy. Every cough feels as though someone is punching you in the chest and stomach.
Getting sick with a cough is definitely something to avoid. If you are talking to someone who you realize is sick, don’t feel obligated to remain a polite distance from them. Back up and avoid contact! If you do end up getting sick, you will be in great pain.
And it doesn’t end when your cough subsides. Even when you're not actively coughing, your sore muscles will continue to ache. Holding your chest will seem like the only thing that can help, but it doesn't actually relieve the discomfort.
On the positive side, one benefit of having a numb stomach is that I can bring down a fever without experiencing the usual pain. Let me explain. When we had high fevers as kids, my mom would bring down our fevers by patting our hot skin with a washcloth dampened with water and rubbing alcohol. After wetting the skin, she would blow air on the dampened area to cool down our bodies. We hated this procedure because it would be painful when we had a fever of 102 degrees Fahrenheit or higher, but she would continue until our fever broke. She was always successful at her task.
Now that I have a numb stomach, I can use my mom's procedure without feeling the accompanying pain. I place my hands (chilled by cold water) on my numb belly, and my fever will soon drop.
Gaining Even a Little Weight Feels Uncomfortable
Another thing I’ve noticed since my stomach was stitched up from side to side is that when I gain even a pound or two, I can tell right away. The skin around the long scar becomes stretched tight—as if I've just eaten a massive Thanksgiving meal. And if I let my weight climb a little more, my stomach begins bulging out on either side of the scar. It’s not pretty, and it motivates me to get on my treadmill.
Breast Tightness and Shape
Several months ago, I mentioned how the tightness of the skin creating the new breasts feels like I am never able to remove a bra. Mostly, it still feels that way, but it seems to have relaxed a bit. It's possible that this is related to the reduced swelling, or it's possible that I’m just more used to it.
In terms of the shape of my new breasts, I was surprised when I saw photos of myself at my son’s recent Bar Mitzvah. Actually, the surprising thing wasn’t so much the breasts themselves; rather, it was the area just above them. There’s a strange indentation that wasn’t there before the surgery. I think the difference is that before the surgery, more of my chest was filled out by the natural breast tissue.
Menopause and Hot Flashes
I started going through menopause about a year and a half ago, when my ovaries were removed. I'm still experiencing hot flashes, and I've learned that sleeveless tops are required menopause-wear. My Southern husband tells me, a Southern woman would call a hot flash, “my own personal summer.” Perhaps that’s why First Lady Michelle Obama tends to wear sleeveless dresses and tops—I wonder if she’s going through early menopause? Perhaps these clothes help her cool down quickly after a hot flash sweeps through her body.
Anyway, when I wear my sleeveless tops now, I’ve become a little self-conscious because you can see the indentation in my skin above my breasts.
I think I'm having fewer hot flashes than I was a year and a half ago. Either that, or I'm just more used to them.
They still strike the hardest at night. My husband thinks I’m nuts when it’s winter out, and I keep the windows open and the ceiling fan turned up to its highest setting. All night long, I’m either burning up or frosty cold. It’s amazing that women who are going through this can this get any sleep at all. Oh, and does anyone else experience this: Sometimes, when a doozy of hot flash is about to strike, I’ll suddenly feel sick to my stomach. The sick feeling washes over my body, and it's followed by a wave of heat.
Did I Make the Right Choice?
Once in a while, I still question my choice to have this procedure, but that quickly changes when I think about my children. By now my kids are used to my strange, new body—and my daughter calls my scars a smiley face because of the way they look to her. I wonder if my son will grow up thinking a woman’s natural body is strange after seeing my thrashed skin. I still worry if my children carry this horrible genetic mutation, and I don’t look forward to waiting another decade before my daughter can be tested.
Sorry, some of these photos are gross! But I decided to include them because I think it's helpful for people to know what to expect.
For the sake of comparison, I've included some "before" photos (pre-surgery), as well as post-surgery photos from the 2-week mark and the 11-month mark.
Profile: 2 Weeks Post-Op
Profile: 11 Months Post-Op
Belly: 2 Weeks Post-Op
Belly: 11 Months Post-Op
Belly Button: 2 Weeks Post-Op
Belly Button: 1 Month Post-Op
Belly Button: 2 Months Post-Op
Right Hip: 11 Months Post-Op
Left Hip: 11 Months Post-Op
Left Breast: 2 Weeks Post-Op
Left Breast Scar: 11 Months Post-Op
Right Breast: 2 Weeks Post-Op
Right Breast: 11 Months Post-Op
Thanks to everyone for contacting me with comments, questions, and stories about your own TRAM flap and mastectomy experiences. Please continue to let me know how I can help you through this process and if there's any information you'd like more information about.
A Bit of TRAM Flap Humor
My family knows I'm terrible at telling jokes, but here's a little TRAM flap humor I heard from a friend. When I wince in pain and place my arm across my breasts, my kids ask me what's wrong. "It's okay," I tell them. "I just have a stomachache!"