by Karuna Jaggar, Executive Director

Friday morning, SABCS opened with a debate that was hyped like a sporting event in an effort to spice up a pretty dry conference. The topic was about surgical options, which is a defining decision for a majority of people diagnosed with early stage breast cancer, and was given the unfortunate title: “Mastectomy should not be offered to patients who are breast conservation candidates when modern radiotherapy is available.”

The off-putting paternalistic tone was reinforced when three white men, Drs. Richard Crownover, Lawrence Marks, and Alastair Thompson, took the stage to debate what surgical options should be presented to women with breast cancer. Even though the discussion was downright jovial, the adversarial structure of a debate forced a complex topic into two polarized camps, with each trying to claim a win. Instead of a rich and nuanced discussion of the pros and cons for different people in different situations, the debate format forced the idea that there is a single right answer for every patient. But the reality is that deeply personal medical choices are nuanced, complex, and contextual—as varied as real people’s diverse lives.

I want to be clear that after looking for laughs with mock verbal sparring, the debaters ultimately agreed that these choices must be driven by patient preference. It’s de rigueur in 2019 to talk about shared decision-making and patient choice. But these deeply personal choices are only as good as the information patients are given. (Not to mention that what’s framed as a choice is impacted by life circumstances, external influences, and constraints.)

Setting aside the highly personal aspects of the decision—like convenience, cost, accessibility, etc.—what data was shared in the debate that can inform this important decision?

Effectiveness of Treatment 

It goes without saying that the reason people undergo the brutality of cancer treatment is the hope of living longer. And the good news is that for more than 35 years, there is clear data showing equivalent survival rates for women who undergo lumpectomy with radiation, and women who have mastectomies!

More than 70% of early stage breast cancer patients are good candidates for lumpectomy, also called breast-conserving surgery. But it’s hard to get doctors to scale back treatment once it’s become standard, as we see time and again, and mastectomies had been the standard for so long that surgeons simply continued doing them, despite the research. Because of slow uptake, in 1990 the U.S. National Institutes of Health released a consensus statement saying that lumpectomy plus radiation was preferred over mastectomy for early-stage breast cancer:

“Breast conservation treatment is an appropriate method of primary therapy for the majority of women with Stage I and II breast cancer and is preferable because it provides survival equivalent to total mastectomy and axillary dissection while preserving the breast.”[1]

It’s confounded many doctors and researchers that in recent years, more and more women are undergoing mastectomies, saying they want to “do everything they can,” despite well accepted data showing larger surgeries aren’t helpful for survival. (I’ve written[2] and spoken[3] about this separately elsewhere.)

It’s important that individual choices are respected in a spirit of humility and compassion. It’s important that people diagnosed with breast cancer have complete, balanced, evidence-based, and understandable information about their treatment options, in order to make the best decisions they can about what’s right for them.

It turns out it’s not entirely true that lumpectomy with radiation and mastectomy have the same survival benefit: a number of studies, including some population studies, have shown that survival is actually slightly worse with mastectomy, versus lumpectomy and radiation.

Which was the first point made by Marks, who is a radiation oncologist, in the debate, arguing that lumpectomy with radiation is a superior choice. The perception among many people is that surgery is the aggressive, proactive treatment choice. But Marks (and later Crownover) argued that modern radiation protocols are able to more completely and thoroughly treat all breast tissue, including the lymph nodes, compared to surgery. Standard CT radiation planning uses each person’s specific anatomical structure to develop individualized treatment, ensuring better coverage of the breast so as not to miss areas, while also successfully avoiding the heart, which is very vulnerable to radiation damage.

Additionally, Marks presented Danish data showing survival benefit from treating the internal mammary nodes, which do not get treated with mastectomy, to suggest that radiation will improve survival. He went on to show MRI image data showing that skin and nipple sparing mastectomies leave more gross residual breast tissue, increasing risk of recurrence. Marks concluded that because radiation is “smarter and respects how cancer spreads,” it may ultimately lead to slightly better survival than mastectomy.

Even though people continue to choose mastectomy because of the (mistaken) belief that it improves survival, most people base their surgical decision on a range of other factors.

Medical Error and Quality Control

Even though quality control standards are not on the pro and con list for most patients weighing lumpectomy or mastectomy, Marks argued that the nature of the disciplines leaves less margin for error with radiation. Radiation is a “team sport” involving multiple disciplines (dosimetrist, medical physicist, etc.) and peer oversight (standard for beam design, etc.), meaning that radiation oncologists work with other experts routinely looking over their shoulder to follow strict protocols. And unlike the immediacy of the operating room, radiation oncologists have time to get another opinion for complex situations. These quality controls, Marks argued, mean that radiation standards can scale more reliably, whereas “surgery is more operator dependent,” which may explain the worse outcomes for mastectomy at a population level.

In a later discussion in a separate forum, Crownover allowed that there can be quite a bit of variability with radiation protocols as well. He acknowledged that there are several different techniques for deep inspiration breath to protect the heart, a number of which aren’t all that effective, and this breath technique is also user dependent.

Toxicities, Risks, and Harms

For most people, concerns about the toxicities, risks, and harms of treatment ultimately drive their decision for mastectomy or lumpectomy. Unfortunately, the debate itself didn’t substantively address the significant risks and harms of mastectomies, as distinct from the general risks of surgery. Whether or not someone chooses reconstruction, mastectomies are major surgeries and as Peggy Orenstein wrote in the New York Times[4] a few years ago:

“Breasts don’t just screw off, like jar lids: Infections can occur, implants can break through the skin or rupture, tissue relocated from elsewhere in the body can fail. Even if all goes well, a reconstructed breast has little sensation.”

Both radiation and surgery come with risks and harms.

The risks of radiation are more familiar to most people than the risks of surgery. Acute harms include burned skin, pain, dry cough, fatigue, disruption to daily life, and more. Mid- and long- term harms include fibrosis, upper limb problems, worry of recurrence, and secondary cancers, such as angiosarcoma, esophagus, and lung cancer. Disturbingly, African American women are especially at risk for secondary lung cancer after breast cancer treatment.

What is not as widely known is that significant improvements in radiation techniques over the last 20-30 years have reduced the dose and lowered toxicity from radiation treatments. Anterior techniques that caused heart damage are no longer used, and improved targeting by shaping the radiation fields, along like techniques like holding the breath, protect the heart and lungs.

Which of these harms, risks, and toxicities are more acceptable is ultimately a decision that each patient must make for themselves, with balanced, evidence-based information.

Quality of Life

Since data can never tell the full story, many people want to know about the experiences of other patients in similar situations. Researchers looking at quality of life and patient reported outcomes found that patients with lumpectomies reported higher breast satisfaction, psychological well-being, and sexual well-being compared to those with mastectomies. These are deeply personal experiences and each person must weigh the considerations as best they can with the information they have.

Without talking at all about patient reported outcomes, Thompson showed several slides of reconstructed breasts illustrating what he calls “beautiful” cosmetic outcomes, though he acknowledged not everyone with reconstruction will get satisfactory results. But presenting aesthetic reconstruction results without acknowledging the loss of sensation with mastectomy focuses on the experiences of people looking at breast mounds, rather than on the person living in the body that lacks sensation and a sexual organ.

Which is just one of the reasons I went to speak at the mic.

My Public Comments

I have to confess I was chomping at the bit while the moderator asked questions, and I was nearly waving from the audience mic in my impatience to be called on. There was so much to say but I kept it to three points.

  1. I talked about the loss of sensation and sexual pleasure after a mastectomy and how many women aren’t told about this when they are counseled about their surgical options. And I urged all the physicians in the audience to make sure to include this in their own consultations with patients.
  2. Knowing that many of these doctors aren’t up to speed on the data about the harms of breast implants, I talked about Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) and Breast Implant Illness (BII) and the importance of including the harms and risks of implants as factors in this decision.
  3. Finally, I noted that both of the treatment options being debated keep the doctors on the stage—and in the room—gainfully employed. Which is why it’s time to pay attention to primary prevention, so we aren’t put in the position of trying to decide between hideous treatment options.

That got a little applause—from the handful of patients in the room with firsthand experience of the miserable menu of side effects, risks, and permanent physical changes that were being debated. Until we get to the environmental root causes of the breast cancer epidemic, a couple hundred thousand women each year are forced to make these dreadful surgical decisions.

And that’s why I say neither side won this debate.