Breast cancer touches all of our lives, and I am no exception. In February 1996, I went for my first mammogram. I was only 33 at the time, but I had read about the importance of having a baseline mammogram for early detection of breast cancer. Early detection meant cure, right? As a single mother of two young daughters, I was all about early detection and cures.

So, I went for a mammogram, astonished at how my 34B’s were able to squish like a schnitzel on the chilled mammography plate. The technician greeted me with a smile and warm hands, and for both I was grateful. The procedure, while uncomfortable, was not unbearable. I mean, I had given birth to an 8-pound baby without so much as an episiotomy. This was a simple walk in the park. The technician informed me that no news was good news, and I left feeling initiated (once again) into the sisterhood of womankind.

You can imagine my shock when I received a call mid-March that something unusual had been detected in my mammogram and that I needed to return for an amplification. The previously chipper technician met me with a solemn face and greeted me in almost a whisper. She did not make eye contact. The amplification was done in silence. Again I was told that I would be contacted if something was detected.

A week later, I was scheduled for a needle biopsy. As I lay facedown, my left breast dangling through the hole in the hospital table, thoughts raced through my head: “What if it is cancer? I can’t stop working. How will I take care of the girls?”

“No,” I told myself. “This is not cancer. I’m only 33 after all, and who gets cancer this young? I am a vegetarian. I am an aerobics instructor, for heaven’s sake! I don’t feel sick!”

I was provided with a bag of ice to place over the area of my breast that had been biopsied. They had found three suspicious areas and removed them, leaving a marker just in case … In case of what? I wondered. I left with my bag of ice and a fearful heart.

I started noticing articles in newspapers and magazines about young women with breast cancer. Had these always been there? Was I just now seeing them? I went home, hugged my daughters and cried. I cried the entire weekend as I waited for Monday’s pathology report.

I went alone to the hospital. I didn’t want to feel like I had to take care of another human being if my news was grim. I wasn’t sure I could take care of myself, let alone another person.

I went to the desk and announced my arrival. Again, the quiet whispered reception. I was immediately whisked away to a back office. Alone. Alone with a running video titled Living With Breast Cancer. Oh, my God! It’s true! I must have breast cancer. They’re preparing me by showing this video.

I began rehearsing how I would tell my family … my parents … my brothers … my daughters. The pathologist arrived and sat in a chair across from me. I took a deep breath. I don’t think I exhaled until I had been home for several days.

The pathologist began. “Well, we found three suspicious nodules and we removed them.” OK, buddy, so what are they?

“I’m curious,” he continued. “Have you ever experienced a trauma to the left breast?”

A trauma? You mean other than the needle biopsy that occurred the previous week? “No,” I replied in a small voice while still holding my breath. “Not that I am aware of. Why?”

“These are calcifications that appear to be from a traumatic blow to the breast,” he answered.

Let me get this right. I have been poked, prodded and petrified because of benign calcifications that possibly occurred during a Thanksgiving round of family football?

“So, I do not have cancer?” I whispered.

He shook his head and finally made eye contact. I was flooded with relief. I would live. I would raise my daughters. I would endure their teenage antics, their graduations, their weddings perhaps. I might even experience grandchildren!

What I wasn’t prepared for was the second wave of emotion that I experienced — anger. Anger at the time wasted, waiting and worrying for four excruciating days before I had to return to the hospital, find parking and sit in a room for 20 minutes watching a video about breast cancer. Anger at waiting for a doctor to hand over my fate. To me, this seemed so insensitive and cruel. What is wrong with health care that we treat the disease without treating the person?

However, I was 33 years old, a single mother, and I had just been told that I did not have cancer. I left that hospital, lived my young life and put breast cancer aside — until recently.

The call

I am a licensed clinical professional counselor. I had been in private practice for a few years when I received an email from METAvivor (metavivor.org), a local nonprofit group whose mission includes providing emotional support to individuals living with stage 4 metastatic breast cancer and promoting funding for research projects. The organization was looking for a therapist to facilitate a support group focused on meaning construction and stage 4 metastatic breast cancer.

Author and psychiatrist Viktor Frankl provided us with a foundational understanding of the importance of meaning construction in his classic book Man’s Search for Meaning. He proposed that the search for meaning was universal to the human experience and that it was a prerequisite for mental and physical well-being. Furthermore, an inability to make sense of our situation has been found to be associated with poor health. Therefore, a cancer support group that promoted meaning-making could provide patients with the necessary tools to experience a sense of well-being, even in light of their diagnoses.

My clinical practice had included counseling for bereavement and hospice care, but I had been spending more time working with survivors of trauma and had focused my advanced training in the area of trauma and spirituality. So, I wasn’t certain that I was going to be the best person to facilitate a support group for stage 4 metastatic breast cancer. Regardless, I agreed to co-facilitate the pilot group with a colleague from a local hospice.

The pilot group lasted eight weeks. During that time, I became acutely aware that the youngest member of the group was experiencing her diagnosis in a much different way than her older counterparts were. She was a 30-year-old married woman who had been diagnosed with stage 4 metastatic breast cancer eight months prior to the launch of the group. She had a beautiful 6-month-old baby boy who provided all of us such joy when he visited our group. Her disease appeared to be relentless, however, resulting in a complete bilateral mastectomy and oophorectomy and causing her days of nausea and fatigue. She would come to group pale and weak, convinced that the last round of treatment had to be curative because of its great potency. She died two months after our group ended.

According to the Metastatic Breast Cancer Network, approximately 162,000 women in the United States are living with stage 4 metastatic breast cancer, and only 27 percent will survive as long as five years. This translates to one death from metastatic breast cancer every 14 minutes. Of this population, 5 percent are women younger than 45. Metastatic breast cancer is more aggressive the younger the person is at onset; only 2 percent of premenopausal women with metastatic breast cancer survive longer than five years following their diagnosis of advanced cancer. Most women living with breast cancer may share similar experiences regarding self-image, relationships and support issues, but unique needs appear to exist among young women living with advanced breast cancer.

As a result of meeting the young woman in our pilot support group, I conducted my dissertation research on spirituality and meaning-making in premenopausal women diagnosed with stage 4 metastatic breast cancer. I dedicated my dissertation to her and to all of the young women living with advanced breast cancer, and I committed my work to serve as the voice of those who can no longer speak. What follows 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 remove not only what many women described as their femininity (breast tissue and nipples) but also their fertility (ovaries and uterus). As a result of treatment, women were catapulted into early menopause and became subject to the physical and psychological manifestations of estrogen depletion.  These manifestations included weight gain related to decreased metabolism, hot sweats, dry skin, decrease in vaginal lubrication and decline in libido.

According to the women in my study, the experience of metastatic breast cancer had stripped them of their bodies, their fertility, their youth and their sexuality. Extensive research demonstrates that 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. Treatment may involve not only the removal of breast tissue and nipples, surrounding lymph nodes and ovaries, but also the insertion of an external port to receive chemotherapy. This may be followed by radiation therapy. The body is left scarred and burned with an existing portal that emerges from the upper trunk.

Many of the women in my study described feeling like a “freak,” a “mess” or a “patchwork quilt.” All of the women described feeling detached from their bodies following their treatments. The body that remained was described as lifeless and clinical, almost corpselike.

BFFs and other strangers

The struggle to cultivate authentic relationships was a common theme in this study. The women spoke of their desire to be able to discuss the genuinely harsh reality of their diagnoses with family members and friends. However, the women felt that a substantial portion of their circles of support were unable (or unwilling) to assimilate adequately and comprehend the grave world of living with advanced cancer. The women were asked (directly and indirectly) by family and friends to compartmentalize their experience with cancer and to act as if they were not ill. Such requests led at times to feelings of anger, resentment and, eventually, rejection and isolation.

Sexuality

In addition, there appears to be an absence of sensuality as it relates to the body that remains. This, combined with decreased libido, proved to be a common issue for all the participants in my study. The women expressed a desire to resume an active, healthy sex life with their partners, but they struggled with experiencing a lack of sex drive and feeling unattractive.

Research indicates that women younger than 45 who are diagnosed with breast cancer have more difficulty adjusting than do older women. These younger women have lowered overall quality-of-life ratings linked to concerns about body image, partner relationships and sexual functioning, and they also exhibit less adaptive coping styles.

It also appears that having casual sexual encounters becomes less attractive when living with advanced cancer. One of the women described the need to feel emotionally safe before allowing a stranger into the scarred world of breast cancer. She noted, “I will need to trust the person to tell my whole story.”

Legendary living

Engaging in honest dialogue regarding the fears experienced by a person living with a life-threatening illness seems to provide some degree of anxiety relief for the person. This appears to be the result of directly identifying and addressing that which concerns the individual.

For example, many of the women in this study spoke of their fear of being forgotten and not having a part in the rearing of their children. This discussion provided opportunities to identify ways that might allow their values and beliefs to continue to exist even after their lives ceased. Among the ways these women attempted to provide continuity of their presence in the lives of their families was through writing letters, keeping journals and signing cards for future events.

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 4 metastatic breast cancer.

Pink isn’t my color

In addition to feeling isolated from family and friends, these young women living with advanced breast cancer described feeling alienated from the breast cancer community as a whole. The “pink” model of breast cancer awareness strives to inspire hope of survival and a cure. However, these women live with a diagnosis that mandates that they are not in remission and that the cancer has spread to other organs. For them, there is no cure at this time. One woman in the study described the pink ribbon as “a noose that is killing me.”

Faith and peace

Psychiatrist and author Irvin Yalom proposed, “If we must die, if we constitute our own world, if each is ultimately alone in an indifferent universe, then what meaning does life have?”

As one of the study participants said, life-threatening illness can “suck the meaning out of life, making the person feel already lifeless.” In facing death, we are faced with making sense of life, and it would appear that we make choices about how to live our lives until death. Therefore, anything that affirms life force, meaning and importance to others can counter the sense that death has made its claim.

Frankl reminds us that we have the ability to choose how we respond regardless of our circumstance. This can be empowering even when facing death. The women in my study discussed the role of choice. One woman described using humor to help her cope with the chemotherapy. Another described an attitude of gratitude: “I show gratitude more often. … It is liberating to know I can choose happiness.”

The women spoke of feeling a sense of being part of a bigger, universal plan. In particular, they described feeling that a divine presence was actively participating in their illness. Some women in the study felt that their diagnosis was a wake-up call to be more present in their lives and to be closer to the transcendent. Each described a restoration process of reclaiming and redefining her life.

Other women in the study believed that their spiritual faith gave them the strength to endure the changes brought about by their illness and its subsequent treatment. Interestingly, all of the women described experiencing a richer, more authentic life that a “loving presence” had transformed from the ashes of advanced cancer.

Conclusion

As counselors, we have an incredible opportunity to help support young women living with advanced breast cancer in the following ways.

Body talk: We can help these women (and their partners) reconnect with their bodies in a healthy and empowering manner. We can talk about sexuality and recognize the role that it plays in our emotional, spiritual and physical well-being. To support premenopausal women who are living with advanced breast cancer, we need a greater understanding of their fears around rejection and increased recognition of the role that sexual intimacy plays in their lives. This is a focus of my current research.

Bittersweet friendships: We can validate the changes that occur in these women’s friendships and offer grief work around these losses. We can help clients establish healthy boundaries in relationships that feel authentic and protective. In addition, we can promote the strengthening of those relationships that are nurturing and empowering.

Legacy work: We can help clients cultivate strategies for legacy. Lillie Shockney, administrative director of the Johns Hopkins Breast Center, has written an exceptional book titled 100 Questions & Answers About Advanced and Metastatic Breast Cancer that helps clients and families navigate the challenges of advanced breast cancer. It also provides excellent ideas for being present and remembered beyond the cancer. In addition to her book, Shockney hosts exceptional retreats for families living with advanced breast cancer and provides a forum for discussion, connection and community to these patients and families.

Beyond the pink ribbon: We can connect young women who have advanced breast cancer to communities that are validating and supportive. Wonderful online communities include Young Survivors Coalition (youngsurvival.org) and the Pink Daisy Project (pinkdaisyproject.com).

Faith and justice: Facing death directly can be strangely comforting and empowering. However, counselors may be uncomfortable facilitating a candid dialogue that might be painful for their clients. Furthermore, counselors need to be open to their own discomfort in discussing death and dying. Counselors are encouraged to work from a conviction that they are helping rather than hurting clients by asking them to lean into the discomfort that comes from confronting one’s death. These clients are faced with family members and friends who are reluctant or unable to join them on this journey of facing death. Counselors have the opportunity to embody the existential experience and join the client on this difficult journey. The essence of relational, embodied theology is not captured simply by the empathic presence of the counselor, nor the rites and rituals that inspire spiritual and psychological nourishment. The essence of embodying suffering is to give voice to marginalized persons and to tell their stories. Better still, counselors can be instrumental in nurturing the intrinsic divine wisdom that is present in all of us and empowering clients to tell their own stories.

 

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Cheryl Fisher is a licensed clinical professional counselor in private practice in Annapolis, Maryland. Additionally, she is a visiting full-time faculty member in the pastoral counseling program at Loyola University Maryland. Her current research is titled “Sex, spirituality and stage 3 breast cancer.” Contact her at cyfisherphd@gmail.com

Letters to the editor: ct@counseling.org

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.