Treatment involves a lot of contingency planning

Most people don’t understand the mechanics of how a mastectomy works. And if you’ve never had major surgery, as I had not, you might also wonder (or worry, if you’re the one having surgery) about what it’s like when you wake up. There’s a lot, and I want to be fairly detailed, so today I’ll walk through my experience from pre-surgery to waking up and then next week talk about waking up through going home the next day.

A few days before, I had a day of nearly nonstop tests and appointments. Craptons of bloodwork, an EKG, a chest x-ray, and a urine test. Basically, they were checking my lungs, heart, and other organs to make sure they were functioning well, checking for infections or other issues, and checking how well my blood clots. All pretty important things to know before you spend two hours open on an operating table. I also visited both surgeons and then went to the hospital for registration and to get the bottles of antiseptic goo with which I had to shower the night before and morning of.

Turns out that, when you have a major surgery, you not only answer a motherload of questions at the surgeon’s office in the weeks leading up to, and another motherload a few days before at hospital pre-op, but also a third load when you actually get there the day of surgery. There’s also the business of getting the IV in which, in my case, is never fun, getting hooked up to the various monitors, and the stripping and changing into a gown. Mostly, there’s a lot of waiting.

There’s also a quick little procedure known as a sentinel lymph node injection, in which a tech injects a radioactive or colored dye near the tumor. This “lights up” any lymph nodes or soft tissue areas that indicate the possible presence of cancer cells so they can make sure to remove and biopsy those during surgery. The resident who administered the injection told me that patients often report this as a fairly painful injection, but I hardly felt it, so this seems to be a YMMV situation. My surgeon’s notes indicate that I had three lymph nodes “light up” and one that was palpably swollen (and therefore suspicious). He removed them all, sent them for biopsy, and found no involvement.

If they had found lymph node involvement, meaning presence of cancer in one or more of the nodes they biopsied or any in the general region outside the nodes, my treatment plan would have changed. In fact, my reconstruction plan might have changed. Radiation can compromise implants, so if a patient needs radiation, implant reconstruction is usually delayed until after radiation is finished. The fact is that, when you want to begin reconstruction immediately post-mastectomy as I did, the plan you set with your surgeon will contain a few if-then scenarios. Note that not everyone opts for immediate reconstruction. Some people know they’ll need radiation and therefore need to delay implant reconstruction till after. Some people just want to wait till they’ve healed to deal with reconstruction. And some people opt for an aesthetic flat closure because they don’t want to do reconstruction at all.

If you’re doing autologous tissue reconstruction, in which they form new breasts with tissue taken from another part of your body rather than implants, the picture changes a little. As I understand it, most surgeons are willing to begin autologous tissue reconstruction immediately, but not all. It's also a very long, complicated surgery so, if you struggle with anesthesia or bleeding during the mastectomy, they may opt not to begin and instead do more testing before undertaking it in the future.

But if you’re doing immediate implant reconstruction as I initially did, you’ll go under unsure which of multiple scenarios you’ll wake up to. You may wake up flat because there were issues during surgery or because the extent of lymph node involvement indicated a need for radiation. You may wake up with your final implants in place. Or you may, like me, wake up with partially filled tissue expanders which are like implants but much thicker. They’re filled over time via injections into a little port to stretch the skin to fit over your desired implants. In this case, you’ll have what’s called an “exchange” surgery later, in which they remove the filled expanders and put in the implants. That’s a pretty short surgery, and the expander-exchange scenario is what I woke up to.

For this surgery (and most of the others), they knocked me out soon after arriving in the OR, but I think they’d already given me some chill pills because I have no memory of the trip there or of entering the OR. We saw my oncological surgeon before surgery, but his resident did most of the pre-op stuff. During the surgery, he made transverse incisions (horizontal, across the center). While that’s pretty common, not every surgeon goes this route. I have some friends whose incisions were under their breasts and some whose were under but also on a vertical line from the bottom to the nipple. Kind of an upside-down T. This seems to be particularly common in nipple-sparing surgery and I’ve heard anecdotally that the type of incision may depend on the starting size, placement of the primary tumor, and reconstruction plan, too.

In any event, once he had me open, he removed all the tissue, nipples, ducts, veins, nerves, affected lymph nodes and of course the tumor, while keeping as much skin as possible. This is called a skin-sparing surgery. Then he sent tissue samples off for testing. Since I had a bilateral or double mastectomy, he repeated the procedure on both breasts.

Then he scrubbed out and my plastic surgeon scrubbed in. Most reconstruction implants, including mine, are placed under the pec major muscle, which means some cutting and thinning of other pec muscles to create a pocket. The surgeon then inserts either the implant or an expander, depending on how much viable skin you have, and creates a support sling out of a tissue-like sterile substance. They insert JP drains, which I’ve talked about some and will talk more about in the future, to drain fluid out of the region so you can heal. I’ve heard of the occasional patient only having one drain or, on the flip side, more than two, but most people, including me, have two for a standard bilateral with implants or expanders, one on each side.

Because my tumor was quite near the surface, I lost a lot of skin on my right breast, so I did need expanders. Most people who’ve never looked into implants don’t realize that they are measured by the amount of fluid in them (by cubic centimeter or cc) as opposed to inches or cup sizes. That can make picturing what you want or will have pretty difficult. Some folks who’ve had delayed reconstruction report that they were able to hold implants filled to various volumes against their flat chest to get a better idea, but when you haven’t had the mastectomy yet, that doesn’t really work.

The implants most reconstructive surgeons work with top out at 600 ccs. I eventually had mine filled all the way which, for me at my then-present degree of fluffiness, meant about a full C. When he first placed the expanders, he was able to fill them to 350 ccs each and still have enough skin to close the incisions and allow for post-surgical swelling without strain. I mean, obviously, you don’t want them popping back open, so they can only fill so much. But you can imagine that, if I’d just gone with an implant that would fit from the start, I’d have ended up much smaller. Many people are totally okay with that. I’ve known several women who’d wanted reductions anyway and so going down worked out for them. It just wasn’t what I personally wanted.

All told, the surgery and expander placement took about two hours, the surgeon reported clear margins on the tumor, and everything went off without a hitch. Needless to say, I remembered none of it. But as you can see, there were several spots along the way at which the surgeons might have had to change course. I didn’t actually know going in what I’d wake up to. I ended up with the result my surgeons had identified as the most likely, but I had to prepare myself in advance for a certain amount of ambiguity. That’s not easy for everyone and can cause a lot of stress, both leading up to surgery and in the minutes immediately after. If you’re going through it, have grace with yourself. If you love someone who’s in it, have grace with them. And try to stay open and flexible to what comes.

Actually, I think that’s the whole entire core message of this stage of the journey: have grace and stay flexible. You can’t force an outcome by hoping hard and you won’t change anything with worry. My Christian friends have a saying that’s particularly apt here: let go and let God. For me it’s more like “let go and let the divine” or “the universe is gonna do what the universe is gonna do” but the first isn’t as catchy and the second can sound fatalistic for people whose brains and belief systems don’t work like mine. So in whatever way the sentiment behind “let go and let God” works for you, I recommend you embrace it. At this stage, you can’t control anything except how you handle it.