It involves more varieties of pain than folks realize

I talked about the initial recovery from the mastectomy and expander placement a few weeks ago. One thing most people don’t realize going in is that that’s really just the first phase of recovery. People think about the initial swelling, getting the drains out, the incisions healing. But there’s a whole phase two to recovering from this particular surgery and it involves three very distinct kinds of what medicos like to call “discomfort,” but is actually just straight-up pain.

The first part, which may or may not actually hit first, is the nerve pain. I’ve heard survivors call these zingers, zaps, shocks, sparklers, and a whole lot of four-letter words. This will happen no matter what kind of reconstruction you do, including aesthetic flat closures. It has to do with the damage done to the nerves when they remove the breast tissue and those nerves trying to heal, and, in cases of autologous tissue reconstruction, wherein they actually redistribute nerves throughout the relocated tissue and connect them up to your existing nerves, those new connections trying to take hold. They can show up just a couple weeks after surgery or not for a couple of months. The active phase, where you get them pretty frequently, can last anywhere from weeks to months. And, fun fact most people don’t know, you can get random bouts or isolated zaps out of the blue after months of nothing…and it can happen for years post-surgery.

As the tendency to call them zingers and zaps might imply, this kind of nerve pain hits suddenly and tends to be very intense, and it presents like a shooting pain somewhere across your chest, into your breasts when you’ve had tissue reconstruction, in your armpits, and even in your upper arms at times. You know how when your foot or hand falls asleep and you get pins and needles? This ain’t that. A survivor who used to be a police officer once told me it’s a lot like the initial shock of being tased. It doesn’t carry the full body effects of a taser, but she said that very first contact is pretty similar. As I perhaps don’t need to say, they are not fun. They do have a tendency to come out of nowhere and you never really know whether you’re going to get one or a cluster of 10 or 15 or a night’s worth of fireworks. You’d think the night would be the worst case scenario but it’s actually the short clusters that last 10 minutes and then are gone. The bouts that last longer tend to be less intense (or at least that seems to be the general experience based on survivors I’ve talked to and my own experience). The shorter bouts are over sooner, but they tend to be far more intense. In addition, with the longer ones you have time for your nerve pain meds to kick in. If you take them at the first zap and it’s a short bout, you’ll get all the pain, but then it will be over by the time the meds kick in and you’ll be groggy and sleepy for nothing so you get the worst of both worlds. In the early days of recovery – like literally the first couple weeks – your pain management regimen will probably include a nerve pain med in addition to a general painkiller and I do recommend you take both because they work together. If you opt not to take both, you’ll probably find yourself in a different kind of pain altogether (ask me how I know) and it’s not one I would recommend anyone try out. So those are zingers and zaps.

The other really common but really weird pain that comes post-mastectomy is almost universally known as “the band” and sometimes “the vice” (and no, not Miami). It's possible, of course, that some survivors don’t experience the band, but if so, I’ve yet to meet them. The band sits right about where the front band of your bra would be and stretches all the way across the front and it is the tightest, most restrictive pressure you can imagine. There were times it felt so tight, it felt hard to breathe. This is a muscle thing as opposed to a nerve thing, and it can also be exacerbated by scar tissue. I will say that it was monumentally more intense for me after the initial expander placement than any other surgery, but I did get it after exchange surgery and then again after my DIEP flap reconstruction. Tylenol didn’t touch it for me, and Advil was only marginally more effective after the mastectomy. When the band was really tight, the only thing that gave me any relief were the kind of muscle relaxers that knock you loopy. It will loosen gradually over time as your body adjusts and the swelling goes down, but it can last for months. I’ve heard people report anywhere from 6 to 10 months with full loosening taking an entire year, but I never managed to go that long between surgeries to find out for myself.

The third weird pain is the pectoral cramps. They seem to be pretty minor for people who go flat and people who do autologous tissue reconstruction, but I’m basing that on hearsay from other survivors. By the time I had my DIEP flap reconstruction, my pecs were already trashed – and mine reacted much more intensely than most people as I’ve mentioned before – so I still deal with this on a regular basis today, three years later. I’ve only met two people who had implants placed in front of their pecs instead of underneath them, but both of those women told me they had very few pectoral cramps and very little pain in their pec muscles. So while this doesn’t seem to be exclusive to sub-pec implants and expanders, it does seem to be far, far more common in those kinds of reconstructions. Whether it happens a couple of times or on an ongoing basis, it’s a super weird sensation, particularly at first. I mean, who the hell ever thinks they’ll have to stop talking to gasp and then explain to your conversation partner that you’re having a boob cramp?

I want to touch on one more thing here that doesn’t really fit, but also didn’t fit anywhere else and doesn’t really warrant an entire post to itself. That’s the issue of sleeping. For the first couple of weeks, you have to sleep with your head and shoulders elevated at an angle to reduce pressure and swelling and to help the excess fluid drain more easily. Also, for most of us, sleeping any other way just hurts at first. Most people use a wedge pillow and/or sleep in a recliner to accomplish this, and how long you have to sleep elevated really varies by your situation. After the mastectomy, I slept in my then-partner‘s recliner for a solid three weeks before moving to a wedge pillow at the higher angle for another couple of weeks, then stepping down to the lower angle before finally going to a pillow. I didn’t sleep on my left side for almost three months and I wasn’t able to sleep comfortably on my right side, where the lymph nodes were removed, till after my DIEP a year later.

After the exchange surgery, I slept in the recliner for about a week and on my wedge pillow for another, and the DIEP was just a little bit shorter than the original mastectomy on all time frames, although that one was a little funky because of my abdominal complication. Mostly, this was all a matter of comfort for me, although the length of time my drains stayed in had something to do with it as well. That said, I’ve known many people who slept on a small wedge pillow for the required two weeks and then laid on their back on a regular pillow for another week or two before they were on their sides, sleeping like normal. They don’t want you sleeping on your stomach for some time for obvious reasons but other than that, your mileage really will vary on this.

People ask me sometimes why I talk about the painful and stressful parts of the experience and the answer is really simple: people need to know. They need to know what they will be getting into if they find themselves with a breast cancer diagnosis so that they can be prepared in advance. They need to know what loved ones and friends who are on the journey might be going through. And really people in general need to be better educated about all the very complex and very strange ongoing effects of dealing with breast cancer. Awareness is all well and good but, as I’ve said before and will say again, what we really need is education and honesty.