Increasing numbers of women are having mastectomies these days. Whether it’s women with large and/or scattered tumors, women who want to slash their risk of recurrence in the same breast, or women who have both breasts removed when one is cancerous, mastectomies are on the rise. In addition, about one-third of women with mutant BRCA genes (“previvors”) are having prophylactic mastectomies.
Medical professionals will shower you with written information about the procedure, but inevitably it’s the little things they forget to mention. The following list of “I didn’t know that!” tips will serve you well if you’re about to have a mastectomy.
1) Make sure you have enough button-down-the-front shirts on hand. Yes, this is a good opportunity to grab a girlfriend and go shopping. Believe me, the last thing you want to try to do with incisions, drains, bandages, and sore shoulders is pull a turtleneck over your head!
2) Don’t be surprised if they ask you to sign your breast just before heading into surgery. No kidding! With malpractice laws being what they are today, doctors want to make absolutely sure they’re working on the right breast. When you sign it with a nice black Sharpie, they know they’re on the right side. Or the left side. Or let’s just say the CORRECT side.
3) The surgeon will inevitably cut and/or damage nerves in your chest area. It’s virtually impossible not to. Understand and accept that from now on, there’ll be areas of your chest that are numb or tingly. And, like anything else—you get used to it.
4) You’ll have up to four drains dangling from your chest/midsection after surgery. These drains are implanted in the area where your breast once was, draining fluid and keeping the swelling down. At some point, when the draining stops, they have to be removed. The nurse might tell you, “This won’t hurt, a little tug and it’ll pop right out.” Uh, no. I’d describe the pain of pulling drainage tubes as something between “searing” and “excruciating.” The good news is, it only lasts a second. It’s like that really painful shot you once got: before you had a chance to howl, it was over. Take a deep breath, and hope that the nurse pulling has the experience to do it quickly.
5) A mastectomy can look shocking right after surgery, especially if you’ve had reconstruction—this is not for the faint of heart! When you wake up, you’ll be swathed in bandages, probably bloody ones. You may have quite a bit of swelling. And if you’re having autologous reconstruction (e.g., a tram or lat flap), exposed muscle and fat may be visible. Aside from all that, it’s a shock to look down and NOT see your old, familiar breast(s). But take heart; if you haven’t had reconstruction, the incision should heal very quickly. And even if you’ve had reconstruction, you’ll be looking (and feeling) MUCH better in a couple of weeks. Believe me, it’s all a small price to pay for the benefit: preventing a cancer recurrence.
6) The longer you’re in surgery, the longer the recovery. That’s because the longer you’re under general anesthetic, the longer it takes for your body to get back to normal. I’ve heard that for every hour under anesthetic, it takes your body a full day to recover. So keep that in mind, if you’re still feeling kind of woozy and tired 5 days after your 8-hour reconstruction.
7) If you had a positive sentinel node and you need further lymph-node surgery (a.k.a. axillary dissection), you could be left with a fairly major, looping scar in your armpit. But hey, if you’re going to have a scar anywhere, might as well be there, right? I mean, who ever considers their armpit a key part of the package, cosmetically speaking?
8) When you leave the hospital and they tell you not to drive for 2 weeks, or 6 weeks, or whatever they tell you, it’s not because they feel you’re unable to handle driving. It’s because a sudden stop in the car could cause that seatbelt across your chest to do some serious damage to your incision or, worse, your reconstruction.
9) Get physical therapy to restore your shoulder mobility, no matter what. The surgeon may not refer you to PT. If (s)he doesn’t, ask for a referral. If (s)he says you don’t need it, disagree. You may need to advocate pretty strongly for yourself here. But I’ve never yet met a woman who didn’t say PT was a HUGE help after a mastectomy. Take it from me, someone who DIDN’T have PT and 7 years later has permanent shoulder damage; GET PHYSICAL THERAPY.
10) If your group insurance policy or HMO is covering your mastectomy, they also have to pay for reconstruction, and cosmetic surgery on the other breast to make them match—by law. Don’t let the insurance company tell you they won’t pay. It’s part of the federal Women’s Health and Cancer Rights Act of 1998, as follows: “Under WHCRA, group health plans, insurance companies and health maintenance organizations (HMOs) offering mastectomy coverage must also provide coverage for reconstructive surgery in a manner determined in consultation with the attending physician and the patient. Coverage includes reconstruction of the breast on which the mastectomy was performed, surgery and reconstruction of the other breast to produce a symmetrical appearance, and prostheses and treatment of physical complications at all stages of the mastectomy, including lymphedemas.”
OK, all of you survivors out there who’ve had a mastectomy—what can you add to this list? Please post a comment with your own insider tips. And, read some thoughtful advice from Sue Dyer, "Down Under" in Australia.