It will expand your knowledge

Quick note before I begin today: I’ve started some new projects, plus I’m moving and, as I mentioned last week, I have decided to go back to grad school and to return to teaching college full time in a few weeks. So starting this month, I’ll be posting every other week instead of every week. I hope you’ll stick with me and look forward to sharing my new projects soon.

Okay. So, I’ve mentioned in the past that I had expanders, but I want to start with a little 101 on them today because the vast majority of people I meet have never even heard of them. Even many breast cancer survivors haven’t because they didn’t need them and didn’t know anyone who did. But a little over half of folks who choose implant reconstruction have expanders first, so it’s a good thing to know about.

A tissue expander is much like an implant but with a thicker shell and a port near the top. The purpose is to stretch the skin and tissue over time. In the case of mastectomy and reconstruction, the goal is to make room for the size implant a survivor wants. Sometimes, if the patient knows they want a flap reconstruction but wants to delay, an expander may be placed to hold the space open so it doesn’t shrink. Also, people seeking implants purely for enlargement (without mastectomy) might also need them, though this seems to be less common unless the person didn’t have female breasts to begin with. But while breasts are the most common use case, tissue expanders can be used to grow new skin to cover a variety of birth defects and injuries as well.

In breast cancer, expanders are placed either immediately after mastectomy or, if the survivor opts for delayed reconstruction, at some point down the line when they’re ready to begin the reconstruction process. Folks may delay due to treatment interactions or just to give them time and space to heal and think. Mine were placed immediately because, as I’ve said, I was very focused on getting through and putting it behind me, so I never even considered delaying reconstruction. This is one of the main reasons I chose implant reconstruction too; flap reconstructions involve much more recovery time and I didn’t feel like I had that luxury. Plus, everyone I’d ever known had either gone flat (though that was mostly my post-retirement friends and family who just didn’t give a rip) or had implants. I didn’t have a clear idea of how flap surgery worked and I didn’t have any interest in finding out. I wanted the thing over as fast as possible…but I also didn’t want to drop down to what would, for me, be about an A-cup. So the solution was tissue expanders. As I mentioned in an earlier post, most plastic surgeons in the US use implants that top out at 750 ccs, I eventually had mine filled all the way, and he was able to immediately fill the expanders to 350 ccs.

As with implants, expanders are either placed sub-pec (tucked underneath the pectoralis major muscle or pre-pec (in front of the chest muscles). Wherever the implants will eventually be placed is where the expanders go. Sub-pec gives more support to the implant, creates a firmer pocket for it to rest in, and also leaves a smoother final appearance. The downside is that it requires partially detaching the pec major muscle and thinning it out, so it takes a lot longer to strengthen the muscle as a result. Some people will never get back full strength in their pecs. Pre-pec means somewhat less support and the outline shows more clearly through the skin because almost all the soft tissue is removed during mastectomy. So survivors may want some fat transfer afterward to help give a more natural appearance, and that comes with its own potential complications. Even a few years ago, when I went through it, sub-pec was the standard, and that’s what I had. However, I’m hearing more and more about surgeons switching the recommendation to pre-pec because of the muscle issues – or at least giving the patient the option.

Personally, I think this is a good thing. Three years later, despite having the implants gone for two, my pecs remain one of my biggest issues. I have not been able to regain full strength, they still cramp fairly regularly, and they get tight and uncomfortable if I wear a bra too long, go without a bra too long, wear the wrong bra, don’t move enough, move too much, move the wrong way, sit the wrong way for too long, sleep in any position too long at night, roll over wrong, cough a lot, get chilly, get chills, drink something too cold, or have to use too much force in a twisting or pulling motion. Basically, at some point every single day, my pecs are distinctly uncomfortable, if not actually mildly painful. Some days, it’s a lot more than mild. Some days, they just stay mad all day.

Sub-pec placement doesn’t affect everyone this way, though. I know dozens of people who either had expanders then implants or went straight to implants and had no problems at all. Then again, I’ve met a lot of people whose issues are similar to mine. Anecdotally, I’ve come to believe the result may depend on a combination of how much muscle you carry (I carry a lot as do most of those I’ve spoken to who share my discomfort long-term) and how aggressive your body is about responding to wounds and building scar tissue (those of us with long-term pec issues seem to have bodies that react quite aggressively). Again, though, that’s all anecdotal. It’s just my theory based on many conversations with survivors. I have yet to find a study that really explores why it’s a problem for some of us and not others.

But anyhoo, back to the expanders. The first thing that happens post-placement is the initial healing phase. Incisions need a few weeks to heal fully before the pressure of expansion. Average time seems to be three to six weeks, though the exact timing depends on each survivor’s rate of healing, physician preference, how aggressively you intend to fill, etc. Once you’ve reached the point where expansion can begin, you’ll schedule your first “fill.” Mine were done by my plastic surgeon’s nurse and this seems to be pretty standard. In fact, I waited a couple weeks longer than necessary to start, specifically because I adored my nurse and wanted her to do the fills, but she was out for some surgery herself right about the time I normally would have begun. My mastectomy was April 18 and I had three total fills between June 14 and July 1. I came out of mastectomy at 350 cc and finished fills at 695 cc. If I remember correctly, she added 125cc at the first fill, was only able to add 95cc at the second, and finished with the last 125. But those numbers could be a little off. It’s been a long time and I didn’t write the numbers down. I think, at the time, it was so impactful that I thought I’d always remember.

As with so many things breast cancer-related, each person’s fill schedule and timeline can vary quite a bit. It’s dictated not only by how much you started with and where you want to get to, but also how fast you’re comfortable going. Some people prefer to stick with 50 ccs – or even more rarely 25ccs - at a time to make the process more comfortable. Some people pause partway through, either due to life plans like a vacation or just to take a break. Some, like me, prefer to get it done in as few appointments as possible. At each appointment, after the inevitable photo session, my nurse would look and palpate, see how tight my skin was and check out the incision scars, then decide whether it was wise to add fluid and, if so, how much. She always pushed the fluid slowly, stopping to check tightness as she went so she didn’t overfill.

The process itself is kind of neat, I think, and only takes a few minutes. At the top of each expander is a little port with a tiny magnet in it. This allows the nurse to run a little gadget a bit like a stud finder across the area to locate the port. When the magnet lines up, she can insert the needle through a guide, through the skin, and into the port. Then she pushes fluid through a big syringe that looks much like a professional frosting tube – or small caulk gun. Some people experience discomfort or pressure during the procedure, but I didn’t. Most of us no longer have feeling in the spot where the needle goes and I religiously took my OTC pain killers thirty minutes before so the pressure, for me, didn’t kick in till a few hours later. My nurse said she could see the expanders expanding as she filled, but from my angle, I couldn’t. I was kind of disappointed about that because I’d been looking forward to seeing my boobs blow up like beach balls, but such is life. They generally ask you to lie still for a few minutes after the fill is finished, especially the first time, as some folks get a little light-headed. I didn’t have that issue either. She did have to ask me to stop telling funny stories though because she’d start laughing and couldn’t focus. But look, it’s not my fault my mom ran away with the carnival to run the duck pond and that’s how I got here. My life is my life.

Anyhoo, in my experience, once the pressure kicks in, it’s pretty intense. Of course I also did fairly large fills. In my case, the evening after the first fill, I was just hanging on the couch, taking it easy as recommended, and all of a sudden it felt like Alien was trying to explode out of both boobs at once. Since I couldn’t feel the front surfaces, it was the inner pressure that really hit hard. So it was actually more like Alien was trying to burst inward through my chest wall, shatter my ribs, crush my lungs, and feast on my still-beating heart.

Obviously, it was fine. But at the time, it was seriously un-fun. The minute my evening dose of OTCs had cleared my system, I downed a dose of the post-mastectomy prescription holy trinity (pain, nerve pain, muscle relaxer) and knocked myself out early. I ended up taking a half-day the next day so I could do it again. I’d just recently graduated to sleeping in bed on a normal pillow, but I spent the first two nights back in the recliner to ease the pressure. By the 48-hour mark, the pressure eased and, by the time my second fill appointment came around, I was ready, though my boobs were clearly not up for another huge fill like the first. The second two fills seemed a little less intense, though I’m not sure if it’s because they actually were or because I was prepared.

Once the final fill was in, we could schedule my exchange surgery, the one at which the surgeon removes the expanders and places the implants. The general rule is that you need to wait one to three months after the last fill, depending on a variety of variables. Mine ended up being almost two months, mostly because summer is a big season for surgeries, especially in plastics, so the schedule had filled out in advance. So I finished my fills on July 1 and went in for exchange on August 25.

So that’s how expanders work. As to how they are… Well, honestly, they suck. Terrific medical advance. Very important. Very helpful. But, other than my funny story about my shiny boobs blinding my then-partner, I’ve never met a single person who said anything good about the experience. Reviews range from unpleasant to sheer hell, depending on the person. I wish I had better news.

The upside is that it does end and the exchange surgery is easy-peasy compared to mastectomy. And the lesson behind all this is that, as you’ve heard me say multiple times by now, most people really have no idea what breast cancer survivors go through.