Disability and breast cancer

Disability Issues

Dr Christine Peta

THIS article will focus on the intersection of disability and breast cancer. This is in recognition of October as Breast Cancer Awareness Month.

There is a shortage of studies that illuminate the link between disability and breast cancer. However, mastectomy on its own results in physical disabilities. Mastectomy is the removal of tissue from a breast as a way of treating or preventing the disease.

Women who are diagnosed with this type of cancer and undergo mastectomy end up with physical disabilities when they lose their breasts due to treatment.

In addition, some women experience heightened levels of distress as a result of breast cancer diagnosis and fertility challenges that may result from associated treatment. For women who already have disabilities, additional incapacities, including mental disabilities, may arise.

Nonetheless, the belief that all breast cancer diagnoses mean death is fallacious; some patients become survivors but with lasting disabilities across their body systems. But if they are appropriately identified, such disabilities can be addressed through rehabilitation.

Whilst breast cancer ranks as one of the biggest killers of women worldwide, a review of most studies on the disease reveals that such researches assume all women who may have the ailment do not have disabilities.

Most researchers desist from paying attention to women with disabilities who may also have breast cancer or women who acquire disabilities because of the disease.

But recent research has shown that improved cancer treatment methods are adding years of life to affected persons, and survivors may be women who had disabilities before the onset of breast cancer or women may acquire disabilities because of the health condition.

What happens to women with disabilities at the onset of a cancer diagnosis or breast cancer survivors who acquire disabilities as a result of mastectomy?

What happens when women undergo treatment that results in hair loss or acquisition of mental disabilities due to the distress, stigma and discrimination that arises when they are diagnosed with breast cancer?

Reproductive age women may experience fertility problems due to the side effects of cancer treatment. The challenge becomes worse in an African context where infertility is generally regarded as a disability.

In the absence of appropriate counselling, the fear of breast cancer alone, upon diagnosis, may be enough to paralyse a person, or create problems that arise due to treatment, for example, infertility and miscommunication with intimate partners and other family members.

Within African contexts, infertility is a taboo, and women are often regarded as the culprits, in a context of double standards. Issues of male infertility are addressed privately and with care, in a bid to safeguard their dignity, yet women who experience fertility challenges are openly demeaned and devalued.

Research that examines the link involving breast cancer, disability and rehabilitation, as well as breast cancer and mental health, is required.

Similarly, research that explores the experiences of women who may go against oncology advice and have children, and women who have unintended pregnancies after diagnosis is essential, in order to determine whether they indeed give birth to children with congenital (from birth) disabilities, as is commonly assumed, or whether pregnancy incapacitates them further.

In the case of disabilities associated with breast cancer, there is a need to illuminate the role rehabilitation professionals, and family- and community-based rehabilitation stakeholders can play.

Rehabilitation is a set of interventions designed to optimise functioning and reduce disability in individuals with health conditions as they interact with their environment.

While women with breast cancer may have had disabilities before diagnosis or may acquire them afterwards, the aim of rehabilitation is to enable them to undertake most of the life roles they would otherwise have taken up, had they not been disabled or had they not contracted the disease.

Rehabilitation strategies are inclusive of both professional service and family- or community-based service.

Training in oncology rehabilitation among professionals in the field, including therapists and rehabilitation nurses, is highly recommended. Without such training, which is committed to learning about the nuances of oncology rehabilitation, it may be hard to become effective and skilled rehabilitation providers.

There is also a need to foster communication among rehabilitation professionals, family- and community-based rehabilitation stakeholders, and oncology health care providers through dedicated partnerships.

The compulsory inclusion of disability, rehabilitation and fertility as a subject in the curriculum of oncologists and oncology nurses, and the inclusion of cancer rehabilitation in the curriculum of rehabilitation professionals will go a long way in promoting the health, well-being and quality of life of women with disabilities and women without disabilities who are diagnosed with breast cancer, or women who acquire disabilities because of the disease.

 Dr Christine Peta is a disability, policy, international development and research expert. She is the national director of disability affairs in Zimbabwe.

She can be contacted on: cpeta@zimdisa bilityaffairs.org