“You Have Cancer.” Now what!? By: Stacy Bockholt (Couple and Family Counseling Blog)

“You have cancer.” Those are the three little words people DON’T want to hear. They are terrifying. The Mental Health Foundation (2018) describes the run of emotions: “What if it spreads? What happens next? What will I tell the kids? What will going through treatment do to me? How will we manage if I have to give up work? Is my relationship with my husband strong enough to survive this? Am I going to die?” Each cancer journey is unique, but most have levels of anxiety, depression, vulnerability, resilience, fear, and frustration. I am a three-time cancer survivor. I had Hodgkin’s lymphoma when I was pregnant, non-Hodgkins lymphoma when my children were in middle school, and breast cancer when my children were in high school. Each cancer occurred in a different stage of life, with a different treatment protocol, and came with a wide range of physical, cognitive, relational, and emotional side effects. None of the cancers were accompanied by oncology recommendations for how to handle the mental health side of things. This blog is to engage the counseling community in a conversation about cancer, mental health, and the toll a cancer diagnosis takes on the family system.

THE FACTS

The diagnosis of cancer is a family experience that changes the lives of all its members, bringing with it immense stress and challenging situations. The daily routine, distribution of duties, and familial roles all change. It affects the couple’s relationship, their sex life, work obligations, household duties, and parenting. Cancer is a stressor on patients, their caregivers, their spouses, and their children (Wozniak & Izycki, 2014). Statistics paint a grim picture of the vast population of cancer patients. The National Cancer Institute (2015-2017 study) reports that 39.5% of people are diagnosed with cancer during their lifetime. In 2018, the total number of people alive within five years of a cancer diagnosis was 43.8 million across 185 countries for 36 unique cancers (Niedzwiedz, 2019). From 2016 to 2040, the number of cancer survivors in the United States alone is projected to rise from 15.5 million to 26.1 million (Niedzwiedz, 2019). In this vast cancer community, 1 in 3 people report experiencing long-term mental or emotional deficits (Adler, 2008). The odds of having a client who has been diagnosed with cancer, survived cancer, or supported someone with cancer is high.

Anxiety and Stress on the Family System

Immediately following a cancer diagnosis is the fear of the unknown. Initial disbelief, denial, and despair are common and can last from days to weeks. Dysphoric mood, anxiety, appetite changes, insomnia, or irritability often follow and can last weeks or even months. As these waves of emotions flood cancer patients, the focus of the family system shifts, and roles and responsibilities often change. The first few weeks are typically a blur of scans, biopsies, clinical opinions, treatment options, and logistical decisions. The patient is stressed…and family members are terrified and feel helpless. Often much attention is given to the patient, but it is often the spouse, children, parents, siblings, and friends who are lying awake at night with worry. Often caregivers take on the emotional burden to such a degree that they forgo self-care and end up sick themselves (Wozniak & Izycki, 2014). Often those who have difficulty asking for help need oncology counseling to assist them in asking for what they need instead of resenting partners, children, friends, or loved ones for not intuitively knowing what they need. Family counseling focuses on both the patient and the family system. When processed in a healthy way, patients and families typically adapt to and recuperate from treatment and return to a new baseline, sometimes referred to as a “new normal” (Mehta, 2015). Mindfulness techniques can help all family members learn to self soothe when feeling overwhelmed. Clinical trial data shows the benefits of mindfulness in various aspects of cancer management (Mehta et al., 2019).

Juggling Responsibilities

Mehta (2015) reports that families as well as patients are affected by a cancer diagnosis. Preexisting family difficulties may be aggravated. Patients often continue to meet usual school, work, and family obligations while undergoing treatment and may have to manage financial burdens. A significant source of stress during cancer treatment is the logistics of juggling the many appointments, infusions, scans, and doctor visits that disrupt work, childcare, and home schedules. Not being able to travel for work, missing a child’s special event, and feeling a burden to friends and loved ones adds to the frustration of life with cancer. The American Cancer Society lists feeling isolated from others, changes in family dynamics, role reversals, changes in sexuality, grief, concerns about impact on loved ones (especially children), not being able to do what you enjoy, and financial stress as some of the many sources of stress on the family system. Clients may want to protect their children from fear and other difficult feelings, but it’s important to talk openly with children about the diagnosis and treatment. Even very young children can sense that something is wrong. Avoiding the topic may create feelings of confusion and fear (cancer.net, 2021). Counselors can engage in role playing with patients and their spouses in how to communicate with each other and their children during this difficult time.

Depression

One in four people with cancer are depressed. They are five times as likely as the normal population to experience depressive symptoms at some point during their cancer journey (Hartung et al., 2017). Even those with high levels of resilience often get worn down and are physically, emotionally, and mentally exhausted. Many studies suggest that depression among cancer patients results from chemotherapy drugs, not just the mental distress of a cancer diagnosis. These studies suggest that its prevalence could be related to the effect of chemotherapy in stopping the generation of new neurons in the brain known as neurogenesis (Egeland et al., 2017). Physical pain, fatigue, relational disappointment, and discomfort with vulnerability all play a role in dragging a cancer patient (and by association the entire family unit) down. The American Cancer Society reports that 80-100% of cancer patient report fatigue, while Mehta (2015) points to depression, anxiety, sleep disturbances, and pain as well as medical problems such as anemia and hormonal or electrolyte imbalances as contributors to a lower quality of life during cancer treatment. Consultation with the client’s oncologist with recommendations for anti-depressants during the course of treatment may be necessary if the problem persists.


Chemo Brain

“Chemo brain” (cognitive impairment due to the effects of chemotherapy) is also a source of great frustration with up to 75% of patients experiencing lapses in short-term memory and difficulty concentrating (Mehta, 2015). This neurotoxicity adversely impacts patients’ and survivors’ quality of life, including occupational and social functioning, causing unintentional disruptions in family life. It becomes harder to multitask the million little things that individuals and parents do on a daily basis, and details start falling through the cracks. Often children and spouses are left frustrated or resentful when the uniform isn’t washed, the kids aren’t picked up on time, or no one thought about what to cook for dinner. The Mayo Clinic (2021) recommends repetitive memory exercises to train the brain and help repair broken circuits that contribute to chemo brain. Here is where sudoku, Wordle, online games, and crossword puzzles come in. For CE training about psycho-oncology common problems of depression and anxiety, see link to APA training below.

Cancer and Intimacy

The relational effects of cancer vary. For some couples, facing the challenge of cancer together strengthens their relationship. For others, the stress of cancer may create new problems or worsen existing problems in the family system (cancer.net, 2021). Two-way open and honest communication is imperative for navigating the changes in the family. Hair loss, mastectomy, ports, wounds, burns, scars, digestive issues, exhaustion, fatigue, hormonal changes, fear, changes in sexual drive, fertility, vulnerability, and a change in partner roles are just a few of the obstacles that cancer patients and caregivers must face in addition to the physical toll that cancer and cancer treatment takes on a patient. Mehta (2015) also reports the prevalence of sleep disturbances in patients with cancer from 25% to 59%. In addition to a tired patient, for those whose caregivers are in the same bed, this nighttime wakefulness can also be frustrating and upset sleep cycles for both partners. However, despite all the hurdles, many couples who engage in open communication and lean on each other find an intimacy and bond that is deeper than it was prior to the experience. Other couples, however, struggle under the magnitude of a cancer diagnosis and have difficulty working together to navigate changes in roles and responsibility, emotions, and insecurities. People with cancer, and their partners, may benefit from talking with a couples’ counselor who can handle the intensity of their feelings and normalize their fears and frustrations (cancer.net, 2021).

THEORIES and GOALS

Strategic Family Counseling and Structural Family Counseling are both theoretical orientations that may help identify the current family structure and uncover areas of change and stress to the dyad and family system. Couple and family counseling may open communication lines about fears, frustrations, changes in sexual intimacy, and family dynamics. Cancer takes a lot of time and energy to manage and fight. From the beginning, help clients separate what is necessary and what can wait until treatment is over. Encourage them to accept help and simplify their schedules to focus on healing. This is a time to explore relationships with one’s partner, children, family of origin, friends, faith, and oneself. Guide clients in discovering what is most important and encourage them to make that a priority now AND after the storm has passed. Journaling thoughts when they are raw, so a client can refer to them when life is back to its “new normal,” is a powerful exercise. Encourage your client to be open to growth and reflect on their resilience during the process. (Note: Adlerian theory with its base in encouragement is a solid guiding principle.) A treatment goal may be to focus on getting to the other side of treatment with hope and optimism and to help couples “lean in” to each other, rather than lean out. Another goal may be to help family members and couples view the situation from another’s point of view to increase patience, communication, and support for each other.

Holistic Care

The American Cancer Society (2010) describes the benefit of exercise, yoga, massage therapy, counseling, and dietary or nutritional counseling to help treat fatigue and weakness. Movement is good for body and soul. Weight gain, weight loss, muscle atrophy, fatigue, and recovery from surgery are all side effects of myriad cancer treatments. The ACA (American Cancer Society, 2010) reports that movement has been proven to improve circulation, muscle mass, bone strength, and mood while decreasing feelings of nausea, vulnerability, depression symptoms, and anxiety. It can also coincide with our need to connect with others. Whether it’s a short walk with your child, partner, or friend, or joining a yoga or tai chi class, light exercise enables patients to connect with others and nature and move their tired bodies. Encourage family members to be a part of menu planning and cooking. It is a way for caregivers and friends to stay connected to the patient, and for young children to help. The Cancer Rehab and Integrative Medicine (CRIM) team has professionals who specialize in oncology acupuncture, speech pathology, physical therapy, yoga, pilates, facials, massage, nutrition, and mental health counseling that is available for cancer patients and their caregivers. The Leukemia and Lymphoma Society and American Cancer Society also have excellent resources available online and upon request for self-care and nutrition for cancer patients and their caregivers. I recommend all counselors familiarize themselves with the many professional resources available for patients with cancer.

Self Care

My friends all taking a turn trying on my wig…

Self-care includes taking a break from cancer. Encourage your clients to escape into another world through a book by a fire, movie with a partner, game night with the kids, or coffee with friends. The cancer part is heavy…encourage them to put it down from time to time. Cancer patients still like to laugh. It’s a release! Explain that some friends and family members may avoid the patient, or avoid talking about the cancer, because they don’t know what to say or do. Encourage them to be authentic about how they feel about it. If they feel like talking about their cancer, they should bring it up. It is also okay to tell people when they do not want to talk about cancer. Counselors should help clients identify friends and support systems who make the cancer patient feel “normal” and assess for areas where they can still laugh and have fun. “Sometimes, it’s better for (a client’s) mental health to talk about other things or just laugh with friends,” (cancer.net). Doing a Wheel of Influence exercise may help clients map out their emotional support system. Good friends = Good for your health!

CULTURAL & ETHICAL IMPLICATIONS

Integrative medicine provides care that is patient-centered, healing-oriented, emphasizes the therapeutic relationship, and uses therapeutic approaches.

Integrative medicine is a potential solution to the American healthcare crisis (Maizes, Rakel, & Niemiec, 2009). Counselors must consider the wide discrepancy in patients’ diagnoses (stage, severity, side effects, survival rates), demographics (age, race, culture, marital status), disabilities and confounding variables, cultural barriers to treatment (belief or rejection of Western medicine or Eastern healing practices), resilience (background and other current life stressors), spirituality (source of comfort or anger, view of suffering/afterlife), support systems (isolated or supported), financial stressors (disruption in work, medical expenses, caregiving expenses), logistical barriers (transportation and lodging for treatment), and other considerations when working with this population. Initial family intake should assess for these areas to establish a baseline of coping and to identify areas of immediate concern. (Note: I recommend therapists start with the Adlerian Lifestyle Assessment to get an overview of life history and supplement with the “Coping with Cancer” assessment to determine areas of stress specific to the diagnosis.) Maslow’s hierarchy of needs is a good barometer when assessing if a client needs food, transportation, and housing or existential understanding of the meaning and purpose of their suffering.

REFLECTION & GRATITUDE

One of the (few) blessings of a cancer diagnosis is the ability to take a good long look at what is important in life. Who showed up? Who didn’t? What became more important? What was let go? What was the family grateful for and how was it expressed? Did this experience bring the family closer or cause resentments and disappointments that can’t be ignored? In what areas did each member become more self-aware? How is each person better because of this experience? Individual therapy, followed by family therapy as a group, may help each family member reflect on the experience and process thoughts, feelings, and fears.

For those fortunate enough to go into remission, it should be a time to celebrate. And, it is! But, many clients find that re-engagement into their former life is harder than they thought it would be and they don’t feel like celebrating. These feelings are confusing and can cause shame. Why do some cancer survivors feel more meloncholy than ever before? Sometimes going through a difficult time may feel a bit like holding your breath while a car is skidding on ice. There is no time to truly process the gravity of the situation or how close you came to danger. Not until the car rests safely on the shoulder do the tears come and the fear washes over your body. Often, the end of cancer treatment is like that. The Mental Health Foundation (2018) describes this stage well: “The post-treatment phase is an especially volatile time for mental wellbeing, with full psychosocial impacts of cancer and treatment likely to be felt most acutely at this stage. But it is also the time when the well-managed clinical pathway of support is withdrawn.” This adjustment back to a “new normal” is often difficult for families and loved ones to understand and it’s difficult for patients for request continued support now that the disease is gone. It is imperative that counselors stay present and reassure the family that their services are available as long as needed to process the entire experience and get the family ALL the way with firm footing on the other side. Using the tenets of Existential Theory and the teachings of Victor Frankl help clients make meaning of the experience. (See the link below to Meaning-Centered Psychotherapy Training Program by Memorial Sloan Kettering Cancer Center.)

Informational Resources:

Counseling Resources:

  • Flatwaterfoundation.org – (sliding-scale family therapy; equine therapy (EAP/EAC)

  • Cancercare.org – (social workers/case management/education)

  • Widowedparent.org – (loss of co-parent)

  • Regardingcancer.org – (matches patient with survivor)

  • Canceradvocacy.org – (coalition for cancer survivors)

  • Caringinfo.org – (information to help make informed decisions)

  • Kesem.org – (for children with parents who have cancer)

  • Aabcainc.org – (African American Breast Cancer Alliance, Inc)

  • Latinacontracancer.org/ – (services for underserved Latino population)

  • Cancer-network.org/ – (LGBTQ Cancer Network)

  • CRIM – Cancer Rehab and Integrative Medicine – (self-care for patients/caregivers)

You never know how strong you are until strong is the only choice you have

For more information about cancer, mental health, and individual and relational counseling, contact Stacy Bockholt (sbockholt@live.com).

Training Opportunities

References

Angela Wicker-Ramos