Learning about and living with metastatic breast cancer (MBC) can mess with your mind, to say the least. But it’s important to prioritize your mental health as well as your physical health while living with MBC.
As Breastcancer.org Community member DoggieBytes writes, “You are entitled to your feelings. Your diagnosis and prognosis don’t change the fact that cancer is a huge bomb that goes off in the lives of us who are diagnosed. Don’t feel … that your feelings and worries are not valid or worthy. You need to express your emotions. Don’t bottle them up. It can be cleansing and healing.”
Living with any serious chronic illness can be challenging and stressful, and it’s not uncommon for those with MBC to experience mental health issues such as anxiety and depression, says Breastcancer.org Professional Advisory Board member Tamara Shulman, Ph.D., a clinical and consulting psychologist in private practice in New York City and New Jersey.
“It is crucial for patients with MBC to prioritize their emotional wellbeing,” she says. “Though someone may be doing well with her current treatment, it is normal for anyone with a serious chronic illness to experience feelings of loss, such as a loss of health and a loss of the potential plans for her life, prior to being diagnosed with MBC. Though death is a certainty for all of us, the concern about dying — for oneself, and the effects on loved ones — can be a source of emotional anguish, sadness, and fear for someone with MBC.”
Breastcancer.org Community member barbe1958 agrees, “We have to grieve our loss: the loss of our health, the loss of body parts that make us women … the loss of friends who can’t deal with it all, and the loss of confidence and trust in our own bodies.” But finding support from those who are familiar with breast cancer can help, she writes. “Remember this: you are not alone. Many women have blazed this trail ahead of you and can be the best support you’ve ever had. Don’t expect someone to understand who has not gone through what you have.”
Mental health care: What are my options?
There are several ways to get mental health help. Choosing what is most effective or helpful can be based on personal preference, cost, and what is available in your community.
You might find that certain practices you can do on your own — such as exercise, meditation, and relaxation techniques — or simply reaching out to friends and family are effective for maintaining your mental health. But for some people, seeking a qualified mental health professional or a support group may be beneficial.
Individual psychotherapy is typically one-on-one support that is tailored to a person’s particular emotional issues, as well as those related to relationships, parenting, work, and other concerns. “Each person is unique, and in individual therapy the therapeutic focus, techniques, and development of coping strategies can be individualized to the needs and goals of each person,” Shulman says.
If possible, Shulman recommends that people with MBC should try to find a mental health professional with experience treating people with breast cancer. Seeing a therapist who knows breast cancer well will likely be more helpful than someone who does not, as you won’t have to waste time and energy bringing them up to speed on the basics of MBC. With this experience, “the therapist will ‘know the language’ and be ready to offer support and help the patient explore and cope as effectively as possible with their anxiety, depression, or other emotional concerns,” she says.
Different kinds of mental health professionals can offer therapy. There is short-term counseling as well as ongoing psychotherapy.
A social worker focuses on how people can “address life challenges and enhance well-being,” according to the International Federation of Social Workers. They help with “connecting people with the community and support services available there,” according to the American Psychological Association, and they typically hold graduate degrees in social work, usually a master’s degree (MSW). An MSW with additional training and 3,000 to 4,000 hours of work in a clinical setting earns the LCSW degree, a professional certification earned by Licensed Clinical Social Workers.
A psychologist holds either a Ph.D. in psychology, a Psy.D., or an Ed.D. degree and works to “help people learn to cope more effectively with life issues and mental health problems,” according to the American Psychological Association. They have completed doctoral-level work as well as at least one year of an internship and a comprehensive licensing exam, says Shulman. In some states, some psychologists can prescribe medications to treat conditions such as depression or anxiety.
A psychiatrist holds a medical degree (M.D.) and has completed a residency (specialized training) in psychiatry. They are experts in prescribing medication, and “it can be helpful to locate a psychiatrist experienced with MBC who will be especially aware of the chemotherapy and other medications when evaluating whether an antidepressant or anti-anxiety medication may help,” says Shulman.
Who to avoid
Patients should be cautious about consulting a “counselor” or a “coach” who may have limited expertise and perhaps earned a certificate in a brief training experience, according to Shulman. “To be sure of a fully credentialed psychotherapist, it is important to seek out a licensed psychologist or licensed social worker who will have met state requirements for professional education and experience,” she says.
How to find a mental health professional
If you are receiving your cancer treatment at a hospital or medical center, ask if there is a LCSW or psychologist on staff. “That professional will be experienced working with cancer patients,” says Shulman. “Many hospital-based psychotherapists offer short-term counseling. They can be helpful in working with the emotional aspects of cancer.”
If you are interested in ongoing psychotherapy, look for a licensed and specially trained therapist, which can include licensed psychologists, clinical social workers, and psychiatrists. You can typically find local therapists online through your state psychological or licensed clinical social worker organization or other professional online directories. If cost is a factor, and insurance benefits are low, consider university doctoral training programs which may provide low cost psychotherapy.
Joining a support group can be beneficial to your mental health because you get to talk to other people who share your experience.
It’s important to know that many cancer treatment centers offer support groups, according to Shulman.
“Support groups can be so helpful in giving patients a place to share their experiences, feelings, practical and emotional coping strategies, and simply talk with other [people] who are living with MBC,” she says. “It can feel quite isolating to have MBC, and a support group will always be a place where you will not feel like the only person who lives with MBC. It is important that the support group be specific to metastatic breast cancer, because many breast cancer support groups are not, and it will probably not be as helpful to join a group where many [people] have better prognoses.”
While some may be uncomfortable with the idea of joining a support group, Breastcancer.org Community member Hopeful82014 recommends that you give it a chance.
“For anyone who’s had a bad/uncomfortable experience with a support group, please don’t give up on it,” she writes. “There are a number of ways to deal with that and still get the benefits of such a group. One is to speak up — either in the group, if you feel comfortable doing that (and I’d bet you’d not be the only one thinking that you were) or else call the coordinator/facilitator of the group the next day and discuss your feelings with her. Believe me, it can make a huge difference.”
The Breastcancer.org Community discussion boards and other online support communities can also offer virtual support from members who have lots of insight to share. The thread “Managing the Emotions of a Cancer Diagnosis” summarizes multiple members’ advice on how to manage feelings while living with cancer. They include things like being kind to yourself, venting, traveling, exercise, gratitude, Eye Movement Desensitization and Reprocessing (EMDR), volunteering, medication, and more. As Community member ElaineTherese notes, “Our bodies are sick. Too bad about it. But our minds are not. And we need to do our best to give our minds a second chance to experience this world and what’s left of our lives.”
How to pay for mental health care
Insurance requirements in the United States can make it tougher than necessary to find and pay for mental health services. While most health insurance plans provide coverage for mental and behavioral health services, some plans require you to follow certain steps, such as getting visits pre-authorized so the insurer will pay for them, or require you to use in-network providers, who may have long waits to see new patients.
“My advice would be to check out your insurance benefits and see if you can find someone good to work with who is available (or who will put you on their waiting list) before support is urgently needed,” says Shulman.
Sometimes local organizations like YMCAs offer groups or have social work staff that can direct you. Catholic Charities and Jewish Family Services may offer appropriate groups and are open to people of all faiths.
Under a Federal Parity Law, insurance companies are required to offer the same benefits for mental health services as they do for medical services. So if you encounter difficulties with your insurer because it is psychotherapy you are seeking, ask to speak to a supervisor.
It can be difficult to have to be an insurance advocate for yourself when you are already coping with the emotional stress of your diagnosis and the physical effects of your treatment. If necessary, have a family member or friend talk with the insurance company, with you nearby to verbally assure that you are giving this person permission to speak for you and share HIPAA-protected information. You may wish to designate such a person in writing, and most insurers can provide a form to offer written permission to designate someone to discuss your private health information that can be signed and mailed to them.
She also suggests the following low-cost options:
- Psychology doctoral programs may offer clinical psychologists in training who can provide therapy under the supervision of more senior and experienced clinicians.
- Outpatient psychotherapy clinics found in many hospitals and communities typically accept Medicaid, Medicare, and state insurance plans.
Ultimately, “you owe it to yourself to take good care of your emotional health,” says Shulman. “Living with cancer is stressful and challenging, and it makes sense to get all the emotional support you need. Family and friends can offer love and support, but there is a special relationship in psychotherapy. It provides a space — separate from your ongoing life — where you can discuss anything you wish, develop insight, and learn coping strategies to help you live your life fully.”
Written by: Cheryl Alkon, contributing writer
This article is part of Circle of Care: Finding Support with Metastatic Breast Cancer, presented by: