The Choice No One Talks About: Part 1

May 28, 2013

I watched the Angelina Jolie breast cancer coverage the same way I watch scary movies — with my eyes covered. As I peeked at the news through fanned fingers, I was pleasantly surprised at how everyone handled themselves. (I’ll save my thoughts on the portrayal of “celebrity madonna figure cuts off breasts for the children of the world” for another day.)

My critique is twofold: One is that the discussion glossed over the pain, complication rates, and loss of sensation across the entire chest (not just the nipples) that reconstructive surgery entails. Two is that there is a far less complicated way to move past a double mastectomy that no one ever talks about: going flat.

Of course, Jolie’s livelihood relies, in part, on her breasts. So I can’t imagine that was an option for her, but it is an option for other women who are considering double mastectomy.

The “save the rack” mentality shared by so many in the breast cancer community can make it difficult for women to see a way forward that doesn’t involve reconstruction. In the weeks following my breast cancer diagnosis in 2009, I saw five surgeons. Each one approached me with the assumption that I wanted a new breast at any cost. (More on that in Part 2.)

As a science writer who specializes in women’s health issues, I’ve written extensively about breast cancer. As a patient, I saw how easy it was to go down the road to reconstruction. But I can also tell you that road is paved with the good intentions of doctors and pockmarked with huge piles of shit, most likely left by all those ponies and unicorns prancing around inside the minds of plastic surgeons and women alike.

As I yearned for balanced coverage, I was excited to see last week’s article in The New York Times “No Easy Choices on Breast Reconstruction.” The paragraph below tiptoes as close to the truth as any I’ve seen in mainstream media:

Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result.

This paragraph echoes what I’ve been told by dozens of breast cancer surgeons and patients alike. I also experienced the imbalance firsthand. None of the plastic surgeons I consulted said anything about complications, pain, and the possibility of muscle weakness. No one asked if I had a history of back pain (I do) or fused vertebrae (I do) both of which may increase odds of complications, like chronic muscle pain and reduced mobility. The public hears a lot about successful reconstructions, like Jolie’s, but we rarely hear the stories of women who are disfigured and debilitated by reconstruction.

Recently, I was assigned a feature about breast reconstruction for the digital magazine VIV. In that piece, I strove to reflect something more akin to reality. The final magazine feature included most of the following facts and figures:

  • The majority of women—55 percent—don’t reconstruct at all; they choose to either to wear a prosthetic or go without.
  • Women who have immediate (versus delayed) reconstruction are 2.7 times more likely to have a major complication, like tissue death, and are less satisfied with the final result.
  • Among women who choose implants, 30 percent will have complications, such as a hardening of the tissue around the implant (called capsular contraction) in the first year. Within four years that number may exceed 50 percent.
  • The Food and Drug Administration advises women with silicone-filled implants to get an MRI every two years to check for leaks. Not all insurance companies pay for the follow-up scans, which can easily cost a thousand dollars or more.
  • Tissue transfers are extensive surgeries with long, arduous recoveries. They require up to 9 hours in the operating room and up to a week in the hospital, including a day or two in intensive care to monitor blood flow to the new breast.
  • Tissue transfer studies are rare, but in one well-designed trial, 36 percent of women who underwent the most common tissue transfer surgery (called a TRAM flap) had a major complication.
  • A study published in 2010 in the journal Annals of Plastic Surgery found that many women who had tissue transfers felt ill-prepared for the loss of muscle strength, numbness, and extent of scarring.

And, call it personal bias, but I found it reassuring that long-term studies show that 5 and 10 years out, women who had a mastectomy without reconstruction were thrilled with their decision.

I’m glad that Jolie is inspiring women to get tested. The public needs to see smart women empower themselves to get information and act on it. I just wish women had a greater variety of role models to choose from in this realm. Women who chose less-invasive options and are living happily without boobs.

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6 Responses to “The Choice No One Talks About: Part 1”

  1. Elyce Says:

    Many thanks for this post. It helps address my rage at limited choices for women with breast cancer so very well.

  2. Kayleigh Says:

    I couldn’t agree with you more on the fact that no one talks about the choice to forgo reconstruction and that is totally wrong—women need to hear about all their choices.

    I personally wanted reconstruction, and wanted a TRAM, fully knowing all that was involved. I was a good candidate, cosmetically speaking. Yet 4 out of 5 plastic surgeons wanted to do implants, AND they wanted to do bilateral (no medical reason to remove the other breast whatsoever). Why? Because it’s easier for them surgically and they think a woman will be so thrilled w/the perky symmetry she won’t even mind losing her other perfectly good working breast & nipple. Worst of all was that several of those plastic surgeons also tried to convince me to get implants by using inaccurate medical information as scare tactic. It was horrible. Plastic surgeons should not EVER give cancer advice.

    I knew about possible muscle weakness, total numbness, necrosis, etc. I have the numbness, of course, and did suffer some skin necrosis unfortunately. Still, I am happy with the result and would do it again. if I had to

    I am curious where some of your stats came from…especially the one about needing to spend time in ICU. I’m the over cautious type and wished I could have been monitored that intensively but not one of the docs I saw felt it was ever necessary (unless something else went wrong medically, of course)…and many of the women I’ve come across have had similar experiences. I wonder if it is regional? I do think there are many differences depending on where you are in the country.

    This was, as usual, a great post offering another view that you seldom hear about and yet is super important. I am so glad you do this. I think the more opinions, the more options we have the better (of course it goes w/o saying I’d especially like the option to NOT have cancer)

    PS: That article you linked to was great, thanks for that

  3. Catherine Guthrie Says:

    Kayleigh, Thanks so much for your thoughtful reply to my post. Your story of standing up for what you wanted is inspiring. I am thrilled to know that you are happy with your reconstruction. I know many women have TRAM flaps and are very pleased with the result.

    To answer your question, I went back through my research and interview notes. The detail about time spent in the ICU came from the plastic surgeons I interviewed for the story. Maybe they were talking best-case-scenario? Or maybe things have changed as these surgeries have become more routine? Or, yes, it could just be a geographical difference in care.

    While revisiting my interviews, I found the following tidbit from Amy Alderman, MD, professor of plastic surgery at the University of Michigan Medical Center in Ann Arbor in which she talks here about the decision to reconstruct. I thought her words might balance some of the more dour facts I included in the post.

    “About 40 percent of my patients choose immediate reconstruction. I see them crying and stressed out in my office and I can assure them that a year from now life is going to be a lot better. Almost all of them cry when they see me again. They cry because they are so thankful for their reconstructive surgery. They aren’t constantly reminded of their diagnosis, they feel good about themselves in clothes, they feel good when they see their reflection in the mirror. They are happy.”

    If you are interested in further reading, here’s a list of some of my citations:

    “Breast reconstruction after surgery for breast cancer,” PG Cordeiro, NEJM Oct 9, 2008, 359;15

    “Breast reconstruction after surgery for breast cancer,” PG Cordeiro, NEJM Oct 9, 2008, 359;15

    “Complications in postmastectomy breast recon…” Alderman, A, et al Plastic and Recon Surgery 2002 vol109(7) p2265

    “A review of the surgical management of breast cancer…” Rosson, G et al Annals of Surgical Oncology published online March 2010

    “Increasing rates of contralateral prophylactic mastectomy…” T Tuttle, Journal of Clinical Oncology, vol 27, no9, 2009, p1362

  4. Carole Says:

    Catherine,
    I’m so intrigued when a “Pink is not my Color” post appears on my phone that I save my reading until evening when I can pull out my iPad and read every word in detail. Thank you for starting to post again. I’m NOT one year out from completion of treatment yet, but after this experience, your words are realistic, your topics interesting, and your information valuable.
    Thank you, thank you for writing and sharing!
    Carole

  5. Catherine Guthrie Says:

    Carole, Thanks so much for reading! I appreciate knowing that my thoughts and ideas resonate with other folks.
    ~C

  6. Catherine Guthrie Says:

    Your rage is justifiable. Just remember to turn it out instead of in. That’s what this blog does for me.

    ~C


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