For many breast cancer patients, the first time they learning about the array of treatment options out there is when they're forced to decide what they want for themselves. Fear and anxiety are running high, and it's challenging to know what the procedures really involve.
Now, a new study suggests that, a decade later, those who opt for less invasive treatments may ultimately feel better about their decision in some important ways.
The psychological impact of a mastectomy
The study, published last week in JAMA Surgery, analyzed survey results for 647 people with early-stage breast cancer who underwent surgical treatment between 2006 and 2008. Of those participants, about 356 people received breast-conserving surgery — also called a lumpectomy — and radiation while 291 underwent a mastectomy with breast reconstruction.
About a decade later, they filled out the surveys, which covered many aspects of the participants’ feelings about their treatment and their body.
According to the results, women in both groups had equivalent scores on long-term quality of life, "meaning that patients were pretty similar as far as their satisfaction," study author Dr. Benjamin D. Smith, professor of radiation oncology and health services research at The University of Texas MD Anderson Cancer Center, told TODAY.
But, when looking a bit deeper, researchers found the two groups did differ in a few crucial ways, he explained. In particular, those who had breast-conserving surgery had higher scores on measures of psychosocial well-being (essentially, how participants feel about themselves and their bodies given the effects of the treatment they've been through) and sexual wellness than those who'd undergone mastectomies.
"This is really the first study that's investigated these different domains of quality of life and found that there are differences in some (aspects of quality of life) and not others," Smith said. "I find that information extremely helpful when I'm visiting with patients and counseling them about the trade-offs between the two different treatment approaches."
The study’s focus on just two treatment groups is both a strength and a weakness, Dr. Carlie K. Thompson, a breast cancer specialist and surgeon at UCLA Health Jonsson Comprehensive Cancer Center, told TODAY. This study offers nice, clean data about the two of the most common choices for treatment at early stages, but it also necessarily ignores some other rarer groups, like those who had a mastectomy and radiation, according to Dr. Monica Morrow, chief of the breast service in the department of surgery at Memorial Sloan Kettering Cancer Center.
Thompson also said she wished the study had baseline satisfaction surveys from these patients because, currently, there’s no way to know if one group had a higher level of sexual well-being with regards to their breasts before surgery, for instance, which could affect the results. But asking for that data is “a bit of an unrealistic wish,” she added.
The most aggressive option isn't always best
"Breast surgeons have been troubled by the fact that, over recent years, there has been this great increase in women who don't medically need to have a mastectomy choosing to have a mastectomy," Morrow told TODAY. Additionally, women are also increasingly choosing to have both breasts removed even though they only have cancer in one breast, said Morrow, who was not involved with the new study.
Frequently, patients will show up for consultations and say, "I want them both off," Smith recounted. "That's a very understandable, human response to being violated by having a cancer."
But there's now plenty of research to show that removing both breasts when it isn't medically necessary isn't likely to improve long-term survival or have a drastic impact on the chances of cancer recurrence, Smith said. Mastectomies with reconstruction also come with a longer, more involved recovery time. And, as this study suggests, the procedure can have long-term psychosocial impacts, too.
Breast cancer patients are “choosing this for peace of mind,” Morrow said. But these findings suggest that “maybe choosing to have a mastectomy is not really meeting that goal.”
Mastectomies can come with potential drawbacks that need to be taken into account
Based on their surveys, participants in both groups scored about the same on measures of physical functioning and satisfaction with the look of their breasts. They also scored similarly low on a measure of regret, suggesting that most people will be happy overall with whatever treatment they choose, Smith said.
But those who had the breast-conserving surgery ultimately had higher levels of psychosocial well-being and sexual well-being than the participants who had mastectomies with reconstruction.
A lumpectomy with radiation "definitely changes the texture of the breast tissue and can change the look of the breast tissue. But for the most part, they're not significantly impacting the sensation of the breast tissue or the nipple," said Thompson, who was not involved with the new study.
But a mastectomy involves the removal of all breast tissue, including many of the nerves, Thompson explained. So, for most women, the sensation in their breast skin after a mastectomy and reconstruction can be dull or completely numb. "I hear women say things like, 'I feel like I have alien boobs,' or just like, 'boobs sitting on top of my body,'" Thompson said.
That can impact sexual functioning, as well as a woman's overall sense of herself and relationship with her body, experts told TODAY. But with more research in this area, doctors and surgeons can have more informed conversations with their patients who are choosing between these treatment options.
"Shocking" findings on race and ethnicity
The study also found some distressing differences based on patients’ race and ethnicity. Specifically, those who identified as American Indian/Alaska Native scored lower than all other groups in every dimension of long-term quality of life. But because of the extremely small sample size (only five participants self-identified as being part of this group), the experts TODAY spoke to said it wasn’t possible to draw any major conclusions about what was going on.
Still, Morrow called the results “kind of striking,” especially because they were statistically significant even with such a small sample. Smith agreed that the finding was “shocking” and “very tragic,” and added that it’s “consistent with literature suggesting that American Indian folks experience a much higher risk of adverse health outcomes across the entire health care continuum.”
Previous research has also shown that women of color face many hurdles in accessing quality health care, Thompson said. That can all lead to worse outcomes for long-term well-being and survival.
Honest, evidence-based conversations help guide patients
The information in the study can help providers approach patients with evidence when discussing treatment options; Morrow suggested saying something like, “Studies in women like you have shown that, in the long term, their overall quality of life is not better by having their breasts removed. And there are a lot of other short-term trade-offs that we know are worse.”
Smith explained that the oncology field broadly understands that "the less surgery and the less radiation that you have to treat your breast cancer, the better your long-term quality of life will be." But you need to balance that with the fact that you still need enough treatment for it to actually be effective, he added. He and his team are now working on creating visual materials based on the new findings to help patients making these big decisions.
As Thompson put it, "We as doctors want to do what's going to be safest for the patient from an oncologic perspective. But once you get past that, it gets much more nuanced."
The hope is that research like this helps patients sort out what is really important to their individual quality of life as they go through treatment and beyond — and how they can work with doctors to achieve that.