According to the Metastatic Breast Cancer Network, approximately 162,000 women are living with Stage IV metastatic breast cancer (MBC) in the United States and only 27 percent of these women will survive five years.
This translates to one death from metastatic breast cancer every 14 minutes. Of this population, five percent are women under the age of 45. Current cancer research efforts focus on medical treatment and curative measures.
However, metastatic breast cancer is most aggressive the younger the onset and only two percent of pre-menopausal women with MBC survive beyond five years following their diagnosis of advanced cancer.
While there may be similar experiences regarding self-image, relationship and support issues shared by most women living with breast cancer, there do appear to exist needs unique to young women living with advanced breast cancer.
I dedicated my dissertation research entitled “Spirituality and Meaning-Making in Pre-menopausal Women Diagnosed with Stage IV Metastatic Breast Cancer” to the exploration of the experiences of young women living with advanced breast cancer, and I commit my work to be the voice of those who can no longer speak.
Here is some of the wisdom provided to me by the women in my pilot group and research study.
I Am Woman?
The treatment for advanced breast cancer involves invasive surgeries that not only remove what many women describe as their femininity (breast tissue and nipples), but also their fertility (ovaries and uterus).
As a result of treatment, women are catapulted into early menopause and are subject to the physical and psychological manifestations of estrogen depletion. These manifestations include weight gain related to decreased metabolism, hot sweats, dry skin, decrease in vaginal lubrication and decline in libido.
To the women of this study, metastatic breast cancer stripped them of their bodies, their fertility, their youth and their sexuality. Extensive research demonstrates that the physical alterations of the body related to the treatment of breast cancer may have negative effects on identity, confidence, mood, esteem, sexuality, self-satisfaction and quality of life.
The treatment may involve not only the removal of breast tissue and nipples, surrounding lymph nodes, and ovaries,but also an insertion of an external port to receive chemotherapy. Radiation may follow.
The body is left scarred and burned with an existing portal that emerges from the upper trunk. Many of the co-researchers described feeling like a “freak,” “mess,” or “patchwork quilt.”
All of the women described feeling detached from their bodies following the treatments. The body that remained was described as lifeless and clinical–corpselike.
BFFs and Other Strangers
Cultivating authentic relationships was a common theme in this study. The co-researchers spoke of the desire to be able to discuss the genuinely harsh reality of their diagnosis with family and friends.
However, the women felt that much of their circle of support was unable to (or unwilling to) assimilate adequately and comprehend the grave world of living with advanced cancer. Co-researchers were asked (directly and indirectly) by family and friends to compartmentalize their experience with cancer and act as if they were not ill. Such requests led to anger, resentment and eventual feelings of rejection and isolation
A common theme is a diminished experience of sensuality and sexuality. While there may be a desire to resume an active, healthy sex life with their partners, the women struggled with experiencing a lack of sex drive and feeling unattractive.
Research indicates that younger women ( under the age of 45) diagnosed with breast cancer have more difficulty adjusting than older women, with lowered overall quality of life ratings linked to concerns about body image, partner relationships, sexual functioning, as well as less adaptive coping styles. Casual sexual encounters become less attractive as they struggle with body image and low libido.
An honest dialogue about the fears experienced by a person living with a life-threatening illness seems to reduce anxiety. This result appears to come from directly identifying and addressing the individual’s concerns.
For example, many of the women in this study spoke of being afraid of being forgotten and not having a part in the rearing of their children. This discussion provided opportunities to identify ways that would allow their values and beliefs to continue on even after their lives ended.
Writing letters, keeping journals and signing cards for future events were all ways that these women attempted to provide continuity of their presence in the lives of their families when faced with their early deaths.
In addition to memory-making projects, all of the women in the study were involved in using their stories to promote education and awareness of the specific needs of young women living with Stage IV Metastatic Breast Cancer.