Frustration & Loneliness of Advanced Breast Cancer

People with advanced breast cancer face many challenges and may, at times, be overwhelmed by the many frustrations of having and dealing with the disease. Frustrations come in several forms. Advanced breast cancer is a difficult condition for patients, and the treatment can come with many unpleasant side effects.¹ Those with metastatic breast cancer (MBC) may have a lack of clarity on their prognosis and frustration that there is not a cure for this disease. There are often also frustrations among women with advanced breast cancer about how society views breast cancer and the focus on early-stage disease.² Finally, living with advanced breast cancer brings up potential psychosocial issues for the individual and their family.^1,2

Managing with treatment and prognosis of an incurable disease

Metastatic breast cancer is incurable, though treatment can prolong survival time and lessen the symptoms. Treatment brings on its own challenges, though, with many individuals experiencing chronic side effects, including fatigue, pain, cognitive impairment, and sexual dysfunction.¹ These side effects can have a significant impact on quality of life and impact many areas of a person’s life, from relationships to work.

Some people living with MBC are frustrated with not knowing what their prognosis is. While they may understand that they are likely to die from MBC, they may not understand how much time certain treatment regimens may give them. One study found that women with MBC reported that specific details were often missing from their conversations with their doctors.² Because every cancer is unique, and each person responds to treatment differently, doctors may not be able to forecast with much precision, but patients should discuss expectations with their doctor.

Differences for the breast cancer society

Women with MBC that were interviewed to understand their concerns and needs as they dealt with this disease commonly discussed their irritation with the “pink-ribbon jargon” surrounding breast cancer awareness month (October). They also expressed frustration with the hollow remarks that are commonly used to encourage those with breast cancer, such as “you’ve got this.” For women who have been told, there is no cure, these remarks can be annoying and disheartening.²

Many women living with MBC may also be frustrated with the common cancer term of “survivor.” While the term has been used in a variety of ways, with some defining it as the time period from diagnosis throughout the rest of a person’s life, for those who are living with a disease that they will likely die from, the term can be ill-fitting. Some women may prefer the term “Meta-vivor,” as it conveys living with the disease.²

Emotional toll of metastatic disease

Women living with MBC are at risk for emotional distress, and studies have found that almost one-third of those with MBC have signs of a depressive disorder and 6% have signs of anxiety. In addition, MBC can bring up existential distress and loneliness, as women face a heightened awareness of how short life can be as well as an increased sense of searching for meaning.¹

Navigating relationships (dating or marriage) can also be more challenging with MBC and the side effects of its treatment. Many women experience a lack of sex drive and other sexual dysfunction, which can add complications to intimate relationships. For women who are dating, living with a life-threatening disease brings additional challenges, such as how and when to disclose their diagnosis.²

Treatment continues to evolve for advanced breast cancer, and women are living longer with advanced breast cancer.³ While many people may rally around a woman when she first receives her diagnosis, there may be fluctuations in support over time. In addition, people may comment on the woman not “looking sick” and wonder if she still has cancer. Living with an invisible illness brings additional frustration and having to educate and explain your condition to others can be exhausting.

Help to cope with frustrations

While there are many frustrations of living with MBC, from the disease, its treatment, and the emotional impact, many people find that these frustrations are eased when shared with others. Finding a support group, whether in person or online or getting professional help through a counselor or therapist can provide emotional support and additional tools for handling the stresses of living with MBC.