Vital Organs: Honoring a Patient’s Bodily Autonomy and Decision-Making

Vital Organs: Honoring a Patient’s Bodily Autonomy and Decision-Making

Adetokunbo Oluwasanjo, MD

Aug 03, 2017

It’s breast clinic and we start off with an hour of multidisciplinary rounds. This is one of my favorite clinical sessions.

We have a great team. Nurses, clinical navigators, radiologists, pathologists, general surgeons, plastic and reconstructive surgeons, radiation oncologists, medical oncologists, genetic counselors, research coordinators, and even more professionals and aspiring professionals who are students of all of us. We start off. Every patient is valued, unique, and must be well cared for with an individualized care plan.

We don’t spend a whole lot of time on this particular patient—just the average amount of time we spend on each patient generally. Her case seems mostly straightforward, with a few challenging pieces that I have to look up quickly. What should we do about her hormonal therapy? My attending would certainly ask me about that, so I scramble with my phone checking NCCN guidelines, UpToDate, and my oncology e-books.

The patient is a 70-ish lady, with pretty good functional status and a history of early-stage, hormone receptor-positive, invasive breast cancer diagnosed 4 years ago. She had been treated with a partial mastectomy and radiation and had been on adjuvant endocrine therapy for 4 years now. Her diagnostic mammogram this year, though, had shown multiple, scattered, funky-looking calcifications and the core biopsy showed she had 1.4 cm of ductal carcinoma in situ (DCIS).

We talk about a partial mastectomy with radiation or a mastectomy, switching her to a different class of hormonal therapy since her DCIS is strongly hormone receptor-positive and she had developed these lesions while on this class of therapy. We work through all the potential options. And then I go in to see this patient.

I introduce myself, explain my role as the medical oncology fellow, and we go through the whole works—the diagnosis, the biology, I draw, she nods along, her niece who is present nods along too. We go over her options, potential side effects, risk of recurrence with each potential treatment, all that. Questions are answered. She is thankful.

As I take a history, I find out she is widowed. She tells me her husband died in the water, on vacation. He loved to swim. No, he didn’t drown. He had a heart attack in the water. She had been smiling when she told me, chuckled even. She said it was the way he would have loved to go. It was unexpected, but what will be, will be, she said, like it was her mantra. She was happy he didn’t suffer. They had been very good friends, she said. “We had a very happy marriage. Many good times. I miss him.”

I love these moments. Moments when my patients share their stories and I get to know them a little more personally. I thanked her for sharing.

Now to find my preceptor. We have more or less the same conversation again. Clinic is moving along; we see other patients.

We huddle to discuss the last patient when the radiation oncologist walks over towards us, looking bewildered. Apparently, my first patient does not want a mastectomy. Huh?! Not even a partial? No, thank you. She wanted to discuss her non-surgical options, just radiation. Uh oh… That’s not the conversation my attending and I just had.

I don’t like these moments very much. I am concerned that I may not have presented my patient with the information she needed, in such a way that she understood her health condition enough to make an informed decision. I validate her autonomy and reassure myself that I was thorough and my very meticulous attending had gone over the details again.

There is ongoing research and discussion about overtreating DCIS. One of the concerns that tips the scales in favor of breast-conserving surgery or a mastectomy is that in 15% to 20% of patients the surgical pathology demonstrates invasive cancer when the core biopsy only showed DCIS. If she chose to have surgery, we would have an opportunity to confirm that she does not have invasive cancer.

Plus, individualized care, right? This patient had invasive breast cancer in her contralateral breast and developed hormone receptor-positive DCIS while on hormonal therapy. I am concerned about her risk for recurrent breast cancer.

It’s so easy to think it would be a simple decision for her, since she had had a partial mastectomy before. But she did not want anyone taking any more of her.

I once heard a physician say that breasts are not that sexy, after all, they’re just fat hanging off the chest wall, in a very anatomic breakdown of a woman’s body. I heard another physician say it’s better to have breast cancer than liver cancer. Breasts are dispensable, a liver is not.

Ouch!

I don’t really think about my breasts. They are just another part of my body that I love and care for like my arms, my face, my teeth.

But that day, talking to that patient, I did. I thought, what would I do if my physician told me that I needed a mastectomy?

Would I cry? Would I try on my favorite bras that night? Would I stand in front of the mirror and look at them one last time? Would I say, “Take them right off!” or “What will be, will be?” Would I search the internet for different treatment options? Search on blogs for patients like me? Would I write about it? Talk about it, or be so numb that I can’t? Would I just “get over it” and start looking into reconstruction and mastectomy bras? Would I put off the surgery for as long as I could or schedule it right away? Would I start to think about my breasts more, for the first time?

I couldn’t answer those questions. I don’t know what I would do. Or maybe I can’t know. Can’t, right? Until it’s you on the other side, in that gown, on that examination table, you can’t really know for sure.

This patient’s breasts are part of her. Her breasts have nursed babies, were soft, tender pillows for her little ones to rest on when they cried or were sleepy. They had brought pleasure to a lover, and in some ways defined her sexuality.

So even at 70, the mastectomy was a no-go. She said she just did not want any breast surgery, period. She agreed to think about the partial mastectomy, though, and schedule another appointment with the surgeon.

So no, breasts are not just lumps of fatty tissue hanging off a chest wall. Like our eyes, ears, stomach, and legs, they belong to us. Parts of the human body.  I agree that one may potentially cure the breast cancer in its early stage, if the diseased breast is surgically removed; in that sense, liver cancer is scarier. If you take out the liver, you need to replace it somehow. But the line of thinking that women can do without their breasts only makes it easier for us as physicians, not for our patients.

For the rest of the day, I find myself thinking about my patient and wondering what she would do when her niece dropped her at home after her office visit.

With my mind’s eye, I see a widowed, elderly lady, home alone, looking at a picture of her dear, old friend, now gone, her beloved husband, wishing he was still here so they could talk about it.

Every part, every piece of our bodies is a sacred piece that in many ways we take for granted until we hurt or lose it. If you’ve ever stubbed your little toe, you can appreciate how much you noticed that toe until it healed.

A mastectomy might make sense to me but not to the person whose body it is. And no amount of support or care replaces the fact that it is still her body. I have to remember and honor that, with my actions, and with my words.

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