Communication Currents

A breast cancer diagnosis is terrifying for patients of any age. But breast cancer survivors who are younger than age 40 confront a particular set of challenges, according to Laura E. Miller’s new study. With more than 250,000 women under the age of 40 suffering from breast cancer in the United States today, Miller’s research has implications for healthcare providers and the families, friends, and partners of young women who are diagnosed with the disease.

Miller interviewed 25 women who had been diagnosed with breast cancer before they reached age 40. At the time of the interviews, all of the women had already completed their treatment and were in complete remission. Miller spoke with the women for about an hour each in places where the interviewees felt most comfortable. Interviews took place at restaurants, coffee shops, hospital offices, and churches, and were structured to identify sources of uncertainty for younger women facing a breast cancer diagnosis.

Findings 

Previous research has shown that responses to living with cancer can vary by age. Through her focus on younger breast cancer patients and the medical and personal uncertainties they experience, Miller found that younger women faced some distinct uncertainties. For example, many patients reported experiencing disbelief in being diagnosed with breast cancer at such a young age. Others experienced extreme difficulty in making decisions about treatment. One woman, who was diagnosed while pregnant, had to decide whether to terminate her pregnancy during treatment. Others weighed whether to freeze their eggs or develop embryos—decisions they were not necessarily ready to make when they were diagnosed.  

The young women also had difficulty with identifying as cancer survivors; many reported feeling they did not “belong” with older cancer survivors. Study participant Monica* told Miller about her experience being called to the stage at cancer walks: “It’s odd to put yourself in the position because I have done…cancer walks and your friends are like, oh, go on, go on up there, and it’s like, I don’t belong there. It’s still just kind of surreal to put yourself in that spot,” she said.

The study participants also suffered from uncertainties related to their future plans about dating, marriage, children, and careers. The women noted that their future plans had been complicated by their diagnoses. As Julie said, her life had “not really begun.”

But among the most interesting findings in the study were the social sources of uncertainty the young cancer survivors faced. Unique feelings of loneliness and isolation, which have not been identified in older breast cancer survivors, were common among the participants.

Both during and following treatment, engaging in everyday conversations with friends was very difficult for the women. “Everyday blah stuff, I just feel like I can’t relate to those conversations anymore and I don’t want to. Before cancer, I was talking about things that don’t mean anything. And so I feel like I have gone off on a tangent and a new normal. It takes some adjustment,” said participant Sarah.

The women in the study also noticed the unpredictable reactions their friends and families experienced. They were not sure how to respond to the news of such a young person being diagnosed with breast cancer. One woman’s friends underwent screenings for cancer. A pregnant participant’s acquaintances asked, “Why in the world would you conceive if you knew you had cancer?”

Participant Leslie said her mother-in-law’s reaction contributed to her uncertainty. “My mother-in-law, she was like, ‘Oh, it’s fine. You’ll have a lumpectomy and you will be fine. You won’t have to worry about it. It’s probably just a little spot.’ Everybody’s like, ‘Oh, it’s fine. It’s fine. Don’t make a big deal about it.’ They tried to be supportive, but it [wasn’t the appropriate way to respond]. I didn’t accept it well, and it made me question because I’m thinking, ‘Well, you’re just making me feel like a goober by making me feel like I’m overreacting to this.’”

Single women who were dating said being diagnosed with cancer increased uncertainties about the development and maintenance of future relationships. Julie said, “It is really hard to establish a relationship with someone if they are afraid you are going to die. And then you don’t want them to see your chest, because who wants to have sex with someone who has been mutilated?”

Participants who were already married described uncertainty relating to maintaining their relationships and adjusting to relational changes after completing cancer treatment. When describing her relationship with her husband, participant Angie said, “I remember thinking, what’s going to happen to us? What if I come out deformed from the chemo or surgery? I just had a lot of fears about what I should do and [what] we were going to do as a couple.” Participant Amy added, “We are a young couple, we don’t have that much life experience, we don’t know what we are doing. So in terms of young marriages, [a cancer diagnosis] can do one of two things: It can break us up or bring us closer together.”

In addition to feeling alone among friends and family, the women also felt isolated in the medical community. “You look around waiting rooms and they are full of older women,” said participant Melanie. “It made me feel so out of place, because I could tell they were staring at me wondering, could she really have cancer?” The participants described feeling alone and out of place throughout their diagnoses and treatment experiences. These feelings of social isolation in younger patients had never been documented in a study like this one.

“Healthcare providers will want to apply these data to their practice to ensure that young survivors feel supported throughout their experience with cancer,” wrote Miller. With women describing feeling uncomfortable attending support groups if the majority of the attendees are older, health professionals treating young women with cancer will want to be sensitive to young patients’ perceptions of isolation in the health care environment, she added. 

The results of Miller’s study could point health care providers toward communication strategies that reduce uncertainty and anxiety among younger breast cancer patients. “Providers should communicate in a way that acknowledges these feelings in the patients,” said Miller. To take action against young patients’ sense of isolation, she suggests, providers may want to ask questions such as, “What will make you feel more supported in this environment?” or “In what ways might the health care community better meet your specific needs?"

*Pseudonyms are used for study participant privacy.