Women with Hairy Cell Leukemia: Mental Health and HCL
May 26, 2021
Hosted by the Hairy Cell Leukemia Foundation with guest speaker Karen Kell Hartman LCSW-R, OSW-C, Department of Social Work, Memorial Sloan Kettering Cancer Center
Webinar Summary
Hairy Cell Leukemia is a rare type of chronic blood cancer which affects men four times more than women. When you are one of the few women diagnosed with a rare disease like HCL, the impact of living with a chronic disease and not knowing anyone else with that same condition can put a strain on mental health. In an effort to foster connections among women with HCL, we created a webinar series designed to address the issues unique to them.
On May 26, 2021, we hosted a webinar focused on Mental Health and Hairy Cell Leukemia with Karen Hartman, LCSW-R, OSW-C. Karen is a manager in the Department of Social Work at Memorial Sloan Kettering Cancer Center in New York.
The discussion was opened by a woman who told her story about the shock and dismay she felt upon first hearing the word leukemia. She discussed her reluctance to share her diagnosis with family and friends, not wanting to admit that she had cancer and not wanting cancer to define her.
The next presenter was another HCL survivor who talked about her own initial unwillingness to share her HCL diagnosis, and how that attitude changed after finding a support group through the HCLF.
A list of questions was shared to guide the webinar discussion.
Discussion Questions
What mental health/coping challenges have you experienced and how did those challenges differ depending on where you were in your journey (diagnosis, treatment, relapse)?
How have you successfully asked for help?
What advice would you give to the spouse or friend of a woman with HCL - how can we assist caregivers in being better 'helpers'?
What coping strategies have worked for you?
Karen Hartman, who specializes in oncology social work at Memorial Sloan Kettering Cancer Center, began her discussion by outlining the phases of the common cancer experience; from receiving the initial diagnosis of cancer through remission, and the stages in between.
Shock of the Diagnosis: The initial shock of hearing the word cancer associated with yourself. The fear of what the future holds. An urgency to do something to regain the perception of control over your body and life. A shift in your worldview and then deciding if, how, and when to share your diagnosis and new reality with family, friends, and the community at large.
Exploring Options, Getting Opinions: Managing the vast amount of new information, often with an entirely new vocabulary. The tests, procedures, appointments, and getting a second opinion. Making decisions about where and how to treat your cancer. Exploring the internet and weeding through even more information. And finally, coping with input from well-meaning friends and family.
Initiation of Treatment: Starting with a sense of relief that you are doing something, followed by the fear of what the side effects might bring and managing those effects. The uncertainty of not knowing what the ultimate outcome of treatment will be. The frustration of dealing with watch and wait and the sensation of loss of control over your body and life. And the concern over the added strain that your cancer might be putting on your caregivers (i.e., family and friends).
Completion of Treatment: Dealing with the conflicting feelings of relief at being finished with treatment and a sense of what now? The loss of support from the treatment team and perhaps even a reduction or cessation of support from family and friends who are ready to get back to normal now that your treatment is finished. Then there is the process of reevaluating your priorities and making decisions about how you want to live the rest of your life.
Cancer as a Chronic Illness: Dealing with the reality that HCL is not curable, and learning to accept “treatable”. Balancing life and treatment - this can have unique implications for women, who are often the caregivers for others, and may have difficulty balancing those obligations with disease limitations.
What does it mean to be a survivor?
The National Coalition for Cancer Survivorship created the phrase “cancer survivorship” to describe the broad experience on the cancer continuum — living with, through, and beyond a cancer diagnosis. NCCS’s definition of a survivor is now the norm for the cancer community. NCCS has expanded its definition of survivor to include family, friends and caregivers
How do you feel about the term survivor? How would you describe “cancer survivorship”?
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Karen then shared some tips for both caregivers and patients.
Caregivers: Everyone who is meaningfully involved in the life of a cancer patient can be a caregiver. Women are innately caregivers and are often thrown into the role of patient/caregiver. As a result, the needs of women caregivers can often be overlooked. Because cancer can be treated on an outpatient basis, caregivers are often thrust into the role of healthcare workers, with little to no training. Then there are the social and financial issues that a cancer diagnosis brings as well as appointments, scheduling, etc.
How Caregivers Can Help: Listen without giving advice. Offer practical help without being asked (meals, shopping, babysitting, dog walking, etc.). Give rides to treatment. Remember that cancer goes on after treatment is over, and so the patient still needs support from friends and family. Just show up.
As a caregiver, you might not know that perfect thing to say. Just listening can be enough.
Coping Strategies for Patients: Consider counseling and support groups. Acknowledge the dual role of patient/caregiver and don’t forget the importance of self-care. Consider complementary therapies, such as meditation, deep breathing, guided imagery, music therapy, and exercise. When anxiety is overwhelming, use checklists to remind yourself of your strengths and that you’re doing everything you can to beat your HCL. Work to regain a sense of control in your life. Participate in educational programs, such as these offered by the HCLF.
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Web Resources for Patients
Hairy Cell Leukemia Foundation: https://www.hairycellleukemia.org
Memorial Sloan Kettering: https://www.mskcc.org/experience/living-beyond-cancer/services-survivors
Leukemia & Lymphoma Society: www.lls.org
National Cancer Institute: www.cancer.gov
National Coalition for Cancer Survivorship: www.canceradvocacy.org
Cancer and Careers: www.cancerandcareers.org – Info on legal rights and benefits, etc.
CancerCare: www.cancercare.org/tagged/meditation - Online virtual support groups, meditations, app for phone, etc.