When breast cancer becomes secondary...
New Zealanders have a good understanding of ‘breast cancer’ thanks to a wealth of information and publicity, but when prefaced by the word ‘secondary’, misunderstanding and fear arise accompanied by hushed comments like ‘terminal’ and ‘lost the battle’.
In response, breast cancer organisations are stepping up to provide more information for the public, as well as targeted services for those diagnosed with secondary breast cancer … and women living with this stage of the disease are making their voices heard too.
Also known as ‘metastatic’ or ‘advanced’, secondary breast cancer can be loosely defined as the spreading of cancer cells from the primary cancer (i.e. the original cancer in the breast) via the bloodstream and/or the lymphatic system to form tumours in other parts of the body. Breast cancer cells do not always establish a secondary cancer if they spread. These cells may die or lie dormant for years before becoming active again. Approximately 15% of those New Zealanders diagnosed with breast cancer progress to secondary stage. Average life expectancy with metastatic breast cancer is 3 – 5 years but many live far longer.
Secondary breast cancers can appear close to the site of the original cancer in the breast (a ‘local recurrence’) but if cells have spread from the breast, they are most commonly found in the bones, lungs, liver or brain. The cells establish in one or more of these areas where they divide and replicate to form solid tumours which can interfere with body functions and/or press on neighbouring organs, bones and tissues. Symptoms and treatments vary, depending on the location: for example, a woman with secondary breast cancer in the liver will experience symptoms and need treatments different from those of a woman with secondary breast cancer in her bones.
A range of ongoing treatment (palliative) options can improve life expectancy but currently there is no possibility of cure. Cycles of chemotherapy, radiation treatment, targeted medicines, hormone therapy, symptom management procedures and, in some instances, surgery, can control or slow the progress of the cancer, relieve symptoms related to disease progression and improve or maintain quality of life.
Being told the cancer has returned can be more devastating than the initial diagnosis. Feelings of fear, shock, anger, isolation and sadness can be compounded by a lack of understanding of their disease. Living with a serious chronic disease presents daily challenges. Some find it difficult to talk about what is happening for fear of upsetting family and friends. Others say their attendance at support groups frightens fellow survivors who fear a recurrence of their own. Some ongoing treatments can cause debilitating side effects. Supporting someone with secondary cancer can take a heavy emotional, social, spiritual and financial toll on families and friends too.
Established in 2006, Auckland-based Sweet Louise (www.sweetlouise.co.nz) provides services and support designed to enhance the well-being of New Zealand women and men living with secondary breast cancer. Senior Support Coordinator Sinda Hall says popular thought may view secondary breast cancer as a death sentence but it is quite different for the members Sweet Louise supports. “Our members are giving life – and everything that comes their way – a go. They deal with the ups and downs, take advantage of the ‘well’ days and live the most normal way they can. Many work or study full or part time and some are young mothers at home. They benefit from meeting others with the same diagnosis in a group setting, sharing information, thoughts and just feeling ‘normal’. They do not want to be told how to live their lives, they are motivated, understand their disease, and some participate in clinical trials to test promising new treatments. As you would expect, they keep hoping for that elusive cure.”
In her article Silent No More: Women with Metastatic Breast Cancer Surveyed (www.womenshealth.com 2011), American advocate and breast cancer survivor Musa Mayer says, “Women living with metastatic disease are increasingly making their voices heard, gathering at conferences, advocating for research specifically focused on metastasis, and supporting one another in online communities.” She quotes key findings from two surveys of women living with secondary breast cancer (2005 Living Beyond Breast Cancer and 2009 BRIDGE) within the USA and internationally. The surveys noted many key issues including:
- The women were highly motivated to seek information about the disease and treatments
- Despite symptoms and treatment side effects, fewer than 20% found it difficult to maintain daily routines and activities
- Over half acknowledged that the disease had a profound negative impact on their lives but 74% said they were still able to enjoy life
- All women showed resilience and courage
The medical and supportive management of secondary breast cancer has improved in recent years, the stigma surrounding it is diminishing as our understanding increases and those diagnosed with the disease are speaking out, either personally or through advocacy, to let us know that there is ‘life after mets’ … and it’s a full and wonderful life too.
With thanks to Jane Bissell at Sweet Louise for providing this article.