Do Patient Empowerment & Squeamishness Mix?

Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.


7 thoughts on “Do Patient Empowerment & Squeamishness Mix?

  1. I appreciate the candor. We all don’t know what we’ll do until it happens to us. I have to admit – I like to see things at least once and then either I’m comfortable or totally frightened.

    • One more comment – I was sent an email today that had an attachment and the contents were ‘don’t forget to wear your sunscreen’. The picture was of my brother’s forehead after a ‘surgery’ to remove basal cell carcinoma. You could see down to the tissues. It was scary and revolting at first, but then I had to keep looking in order to know it was real and what the impact of the cancer really was. It is now burned into my head so far that a brain loufah couldn’t remove it. I showed the kids so they had a reality check.

      So what grosses me out? Watching (or the lack there of) liposuction in action. That’s just not right.

      • Michelle,
        Thank you for your comments! Well, if that photo gets you or the kids to use sunscreen then it worked. But yeah it does sound scary.

        This is kind of random but talking about what grosses us out reminded me of something else I don’t care to see, those ads with the little kids with cleft palates. Do we have to see everything? Does that really make people want to donate? Yeesh. Oh well. Thanks again.

  2. Jackie, Interesting post here about details. I’m going to post next week about details from a slightly different angle. I agree, patient empowerment is a new buzz word of sorts. Everybody is quite different in how much they want to know, but I certainly agree with you, a person needs to know enough in order to make informed decisions. Just curious on the nipples, are you satisfied with the results?

    • Hi Nancy,
      I am very satisfied with the results. I think the mastectomized breast would have looked a bit unfinished and mismatched with the other breast if I hadn’t taken that final step. It obviously doesn’t look like the real thing but I feel like I have more symmetry. I sometimes joke that it’s a “20-footer”–that’s what my dad used to call a car with body work that wasn’t the most professional, meaning it looks good from 20 feet. Like everything else, this is a higly personal choice and I know women who skipped the nipple reconstruction step. My plastic surgeon was very upfront about what to expect from reconstruction. He never led me to believe it would look completely natural but I’m very happy with the results, especially his skills in the “gravity-reversal” department doing the lift and implant to get the other one to match.

      Thank you for commenting! I’ll have to check out your post next week!

    • Yes, it sure has. I keep thinking of how Betty Rollin, who wrote “First, You Cry,” spent a week in the hospital for her mastectomy. I spent the night. That’s not a complaint–I was happy to recover at home. Wonder what we’ll be thinking of all this 30 years from now. Thank you for your comments!

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