In addition to therapeutic innovations and concerns about availability and access to proper disease management and medication for all patients, the oncology community—especially the breast medical oncology community—has become more attentive lately to quality-of-life issues that patients with cancer face. Patient-reported outcomes (PRO) are an increasingly important endpoint in clinical trials. More attention is being given to prevention and management of side effects of medications and various treatment modalities, as well as advocacy for early supportive and palliative care for patients and their caregivers.
In addition to individual discussions with physicians, physician assistants, and oncology nurses, patients can share experiences in support group meetings; this community support has proven to be very helpful and much appreciated by them. In that line, the Lebanese Breast Cancer Foundation (LBCF) has been organizing support group meetings and workshops for patients with advanced breast cancer regularly for the last 10 years, with a few online virtual groups during the COVID-19 pandemic. Lately, LBCF resumed its in-person activities and organized a workshop for patients and caregivers called FOR HER, supported by SciencePRO and sponsored by Pfizer. The workshop included formal lectures, question-and-answer sessions, and an open forum for discussion between a faculty composed of two oncologists, myself from the American University of Beirut Medical Center (@AUBMC_Official) and Fadi Nasr, MD, from Saint Joseph University in Beirut, psychologist Hiba Salem (@hzsalem30) from AUBMC, sex therapist Sandrine Atallah, MD (@DrSAtallah), life coach Grace Khleif (@PositiveGrace), oncology nurse Latifa Shihab, BSN, RN, nurse and breast oncology specialist Rebecca El-Asmar, RN, and breast cancer survivor and new president of LBCF Mirna Sabbah Hoballah, with an audience of breast cancer survivors, advocates, patients, and caregivers.
It was amazing to see how eager patients were to hear about recent advances in therapy as well as dealing with effects of cancer diagnosis and metastasis on their lives. They expressed gratitude for the reassurance that they feel when they know that a multidisciplinary team is involved in making plans of treatment for them and for following up on their care. They appreciated so much the fact that oncologists and major oncology societies such as ASCO, ESMO, and local societies pay attention to their concerns about quality-of-life issues. They were happy to see that the ABC International Consensus Guidelines panel explicitly paid attention and wrote statements calling for patient and family social support, respect and facilitation of job requirements, desire of patients to continue working, and accommodation to their treatment schedules and others.
Emotional and sexual issues for patients with advanced breast cancer and their partners were openly discussed. Acceptance, coping, and adjusting to breast anatomical changes, body image, and premature menopause were debated. Efforts to adjust and work around motivation and sexual desire, various stimuli and arousal approaches, psychological factors, and anatomical obstacles such as vaginal dryness and discomfort were all discussed. In addition to reporting concerns and getting advice from the oncology team, open communication between the patient and their partner was emphasized and encouraged.
It was obvious that relationships with family members and children, management of family conflicts, daily schedules, and social activities matter a lot and should be openly discussed and supported. Seeking help, taking time off, exercising, eating healthy food, positive thinking and protecting the self from negative aspects of life, remembering and reviewing accomplishments, and expressing gratitude were all emphasized and appreciated.
Patients and caregivers follow oncology news and were very eager to hear of advances in therapy. Today, patients in Lebanon, like many in low-/middle-income countries, unfortunately suffer from unavailability of medications and high costs for treatment because of the country’s political and financial collapse and they called for help. Our FOR HER panel made continued pleas to government officials to facilitate access to treatment for patients with cancer.
We emphasized hope and reality. Hope for cure and the reality of living with cancer, with its ups and downs, go together and are best managed by multidisciplinary teams, with the inclusion of patients and advocates, open communication, and improvement of resources and access to treatment.
Workshops that include treating physicians and medical teams as well as patients, caregivers, survivors, and advocates are great learning experiences for all parties. They are very rewarding, and we hope they are implemented everywhere!
Members of the LBCF FOR HER Planning Committee, from left to right: Mirna Sabbah Hoballah, Zeinab Chahine, Fatme Beydoun, Nagi El Saghir, Latifa Shihab, and Rebecca El-Asmar.
Attendees and panel during an open discussion at the LBCF FOR HER event.