Highlighting the Needs of Advanced Breast Cancer Patients
26 September 2019 – In October CANSA focuses on breast cancer, particularly turning the spotlight on the needs of patients with advanced or metastatic breast cancer (MBC). Breast cancer is the leading cancer affecting women in South Africa. According to the National Cancer Registry, 1 in 27 women are at risk of being diagnosed in their lifetime. View Infographics…
Women and men may present with metastatic breast cancer (MBC) with about 99% of cases being female. MBC may also be called advanced breast cancer or stage IV (stage 4) breast cancer. It’s when the cancer has spread to other and often distant sites in the body like the liver, lungs, bone, brain and or other organs or tissues. While MBC is treatable, there is no cure for this disease. The goal of treatment is to limit progression, symptom control and pain management. Access to mental health care has been identified as a need for MBC patients, as well as improvements in lifelong surveillance, tracking of patients and access to routine assessments including mammography, bone density scanning and gynaecological assessments.
Patty Duiker, cancer patient diagnosed with MBC shares, “It’s metastasised to my spine, ribs, body of the sternum, right side of the skull, shoulders and legs. It affects your life greatly. My spine is damaged, I’m a semi-invalid. I’m in constant pain. It’s a struggle just to stay alive. So when I have a good painless day, I’m amazed at myself. Then I praise myself for making it. For not being a quitter. All I need is for people to stop telling me to be strong, because strong is all I know.”
Gerda Strauss CANSA’s Head of Service Delivery says, “Patients with MBC have a tough journey ahead of them. There’s a misconception that those that have survived the disease fought harder than those that didn’t, this isn’t true. Comparison judgements hurt, especially those that are left behind. These women are struggling daily to cope with the trauma as well as the physical limitations that come with it. No matter what your cancer diagnosis, stage or treatment outcome, everyone who is going through the journey of a cancer diagnosis, is doing the best to survive another day and should be saluted.”
Patients with MBC may feel isolated and misunderstood regarding their condition. Challenges faced by these patients include dealing with an incurable illness and side effects of treatment. Other challenges are pain and sexual dysfunction, experiences of social isolation, reduced self-worth, anxiety and depression. There is also stigma related to MBC with the notion that the MBC patient is somehow responsible for the diagnosis and or has not taken adequate care of themselves.
“I have been living with MBC now for almost a year. I went for my check up and everything was clear, but then I started getting severe lower back pains and was diagnosed 2 months after my check-up. Listen to your body, go to the doctor if anything is out of the norm,” adds Simoné Klopper Fourie, cancer Survivor.
CANSA offers counselling and emotional support to cancer patients and families as well as medical equipment to assist with mobility difficulties such as wheelchairs and walkers or eggshell mattresses to help with lying down more comfortably. CANSA’s Care Rooms (only at certain Care Centres) provide accommodation and care for terminal and bedridden cancer patients for pain control and alleviation of symptoms. Caregivers and family members are also able to take a break from the hard work of caring for a bedridden patient, called respite. Respite accommodation is available for a period of 14 days for terminal and/or bedridden patients. End of life accommodation is available for a period of up to six weeks. CANSA registered patients have priority access to services and are supported by CANSA volunteer services.
Treatment in MBC is better if tailored to individual needs (personalised). For example, the needs of MBC patients may be variable and influenced by age, ethnicity / cultural norms, education and health literacy.
Family, caregivers and healthcare professionals may also be impacted in caring for a patient with MBC and may need education and support. Symptoms that the patient and family must be alerted about as these may require urgent attention to prevent further complications in MBC include signs of – spinal cord compression – persistent neck or back pain or decreased power in legs; sepsis – fever; possible lung metastasis-shortness of breath, coughing, chest pain, dry cough, pain; seizures – headaches, personality changes or confusion; liver metastasis – nausea, jaundice; hypercalcemia – increased urination, excessive thirst, dehydration, vomiting and constipation. (Hypercalcaemia is a condition in which the calcium level in one’s blood is above normal. In MBC this may be due to bone metastasis)
Education for patients and their family members or caregivers on palliation and end of life care is also needed. Referral to hospice or palliative care at the right timing may also positively influence the quality of end of life care with better psycho-social support for MBC patients that may help to ease the end of life care experience.
CANSA offers a unique integrated service to the public and to all people affected by cancer. CANSA is a leading role-player in cancer research and the scientific findings and knowledge gained from our research are used to realign our health programmes, as well as strengthen our watchdog role to the greater benefit of the public. Our health programmes comprise health and education campaigns; CANSA Care Centres that offer a wide range of care and support services to those affected by cancer; stoma and other clinical support; medical equipment hire, as well as a toll-free line to offer information and support. We also supply patient care and support in the form of 12 CANSA Care Homes in the main metropolitan areas for out-of-town cancer patients and CANSA-TLC lodging for parents and guardians of children undergoing cancer treatment.
Visit www.cansa.org.za or contact the nearest CANSA Care Centre, call CANSA toll-free 0800 22 66 22 or email: email@example.com. In addition to online resources and Facebook support groups, CANSA offers multi-lingual support on WhatsApp: 072 197 9305 for English and Afrikaans and 071 867 3530 for Xhosa, Zulu, Sotho and Siswati. Follow CANSA on Twitter: @CANSA (http://www.twitter.com/CANSA), join CANSA on Facebook: CANSA The Cancer Association of South Africa and follow CANSA on Instagram: @cancerassociationofsouthafrica and LinkedIn.