Row, Row, Row Your Boat!

Cassiem Rayghanah” ~ by Tracey Derrick
50 years old | Liaison specialist | Heideveld

 

Diagnosed: 5th August 2005 – lumpectomy, chemotherapy, radiation & tamoxifen for five years.
Second diagnosis: 15th June 2009 – cancer lesion in breastbone. Radiation, chemotherapy and femara estrogen suppression. Liaison specialist. Heideveld.
Member of amaBele Belles breast cancer dragon boat rowing team!

“We like to think of ourselves as a floating support group because we’re fighting a communal battle with dignity and commitment.” 2009

 

Tracey Derrick: portraits of breast cancer survivors - Cassiem Rayghana

From Tracey’s 1 in 9 seminar paper, continued from yesterday’s post:

“I agree with his [Richard Avedon] sentiments but it is also about directing the photographic situation and the challenge is still to try and capture a moment, the communication between myself – the photographer – and the subject. As Kuhn says, “The face stands in for the person’s whole being, the subject’s essential humanity is seen as inhabiting the face, the ‘window of the soul’.” (1994:37).

Photographs function in constructing and encouraging particular ways of viewing and telling about the world. The photographs of breast cancer survivors – Alicia and Suzanne (above), Cassiem and Siona (not shown) – are woman that I have met during my breast cancer process. My projects have always developed over a period of time, influenced by the people that I have met along the way and interacted with. These photographs reflect in part my relationship with them.”


DISCOVER MORE ABOUT THE AMABELE BELLES!

Racing for Wellness ~ Cape Times

Friend them on Facebook here!

“Talisman”: Of Luck, Love & Life

Tracey Derrick - breast cancer photography - self-portraiture

In this image of Tracey Derrick with her two young daughters, she managed to capture so much more than mere words are able to convey… What did your heart bounce back to you when your eyes beheld this trio of warriors?


TAKEAWAY: “How To Tell Your Young Children You Have Breast Cancer”

via LatinaMomTV

Taking it a little bit slower …

It is the festive season… Time to kick back and take life just a little bit slower.

Festive Season - Breast Cancer Advocacy

We know that breast cancer doesn’t go away just because it is holiday time, so we are going to still be providing you with some regular reading. We’ll still be talking about the things that matter, but just a little less frequently. Over the next few weeks we’ll chat about how to cope with cancer in the holidays, and dealing with the empty chair at family gatherings. And we’ll be doing some fun stuff too!

So, for the next month, this is the last of our daily posting schedule. We have made sure there will still be posts on Saturdays and Sundays, and one or two during each week as well, so please keep reading!

To all of you, from all of us… thank you for joining us on this journey, and we’ll see you soon!

 

 

We Need Trained Health Professionals!

Mammography, ultrasounds, genetic testing… Lifestyles of the rich and the famous? Well, at least that is how many people living in South Africa feel.

Some people do not even know what a mammogram is. But is this important? Should every woman be going for screening? Why is it that in a country where imaging and treatment is available do women still present with late stage cancer?

The answer is that basic breast self-examinations (carried out by oneself) and clinical breast examinations (performed by a trained health care professional) are not actually being carried out. Yes, mammograms are relevant in certain cases, as are ultrasounds, genetic testing and various other tests and screening – but in our country it is not the answer for the millions of women that have no easy access or funding to go for these tests. Breast self-examination and clinical breast examinations are the number one “tests” that need to be carried out.

It is vitally important that if a woman finds a new lump in her breast, that she goes for a clinical breast examination. Many women in South Africa do not have access to health care facilities like hospitals as the hospitals are often very far from where the people live (and therefore expensive to travel to)  and are also often back-logged with patients. The first point of care for the majority of women in South Africa would be a clinic where a primary health care nurse would assess them.

Breast Course for Nurses - Dr Jenny Edge

The Breast Course for Nurses – one of the partner organisations that make up the Advocates for Breast Cancer –  aims to equip primary health care nurses with the knowledge to perform clinical breast examinations and to know the differences between the normal changes to the breast and changes that need to be referred. The Breast Course for Nurses was started by Dr Jenny Edge, a general surgeon from Cape Town with a special interest in breast conditions. Dr Jenny Edge and Professor David Woods, a retired neonatologist (of the PEP foundation), wrote the Breast Care book which the course is based on. (Click here to equip yourself with a copy!)

To date, courses have been completed in Cape Town, Johannesburg and Durban with courses currently running in Cape Town and Port Elizabeth. We are so excited to see what an impact this course is making! Look at the photos taken at the courses across the country here.

The Breast Course for Nurses focuses on the following topics:

  • the normal breast
  • clinical assessment of the breast
  • special investigations of the breast
  • benign changes of the breast
  • cancer of the breast
  • treatment of breast cancer
  • side effects of breast cancer treatment
  • palliative care
  • community outreach programmes

The course starts with a one day session where the first two  modules of the book are discussed. It then consists of six  months of distance learning with multiple choice questions (MCQ’s) for each module that need to be completed. The course then ends with a two day residential course where the remaining modules are discussed, wound care and palliative care are addressed and networking takes place. Practical sessions about biopsy techniques and lymphoedema therapy are carried out.

Although the core content of the course remains the same, both the input and practical sessions differ regionally depending on the needs of the nurses. The emphasis of the course is on learning rather than teaching and is primarily aimed at equipping nurses with the skills and knowledge to manage women with breast problems.

The World Health Organisation predicts that the mortality due to non-communicable diseases in the developing world will increase by 17% in the next 10 years. This will have a major impact on an already overburdened system.

Primary health care nurses will remain the first point of contact for many women as time goes on. The Breast Course for Nurses aims to educate these primary health care nurses so the correct clinical examinations can be carried out and an efficient referral system can be implemented.

breast course

Does Breast Cancer Run in Families?

In yesterday’s blog we told you about the genetics of breast cancer, but: DID YOU KNOW: breast cancer can run in families, even when there is no evidence of the BCRA gene?

Genetics & a Family History of Cancer

A family history of certain types of cancer can increase your risk of breast cancer. This increased risk may be due to genetic factors (known and unknown), shared lifestyle factors or other family traits.

Only about 13 percent of women diagnosed with breast cancer have a first-degree female relative (mother, sister or daughter) who also have breast cancer.

A woman whose mother or sister has breast cancer is almost twice as likely to develop breast cancer as someone who has no family history of the disease. If more than one first-degree female relative has been diagnosed with, the risk is about three to four times higher.

Interestingly, the younger your relative was when she was diagnosed, the greater your chance of getting breast cancer. For example, if your mother was diagnosed with breast cancer before she turned 40 you have about twice the risk of a woman without a family history.

If you are wondering about your breast cancer risk, you also need to look at the medical history of your male relatives. Breast cancer in a close male relative, such as a brother, father or uncle, increases your risk of breast cancer.

Other hormone-related cancers such as prostate cancer are also relevant. If your father or brother has prostate cancer, especially if it was diagnosed at a young age, then your risk for breast cancer increases.

Find out more here }

Why do we give you this information? It is certainly not to scare you! We believe that if you know about your risks, you will be aware of the need for the regular screening which could save your life. #knowledgeispower 

–> If you would like to read an academic paper on familial risks, we can recommend this one.

 

THIS is the Scope of Practice We Need: Safe, Equitable & World-Class!

In 2004, the Australian Health Ministers endorsed the National standard defining the scope of clinical practice which was developed by the Australian Council for Safety & Quality in Health Care – and as a nation which strives to be world-class and no longer a mere ‘Third World’ country, our South African breast health policy we are lobbying for must include the following requirements within the scope of practice in breast cancer treatment:

Scope of Practice - South Africa - Breast Health Policy - Breast Cancer

Cancer is COMPLEX — and this complexity must be fully incorporated as a medical and social reality within the scope of practice by each and every member of the multidisciplinary team.
• The range of clinicians with different professional expertise (medicine, nursing, psycho-social support, allied health etc.) involved in cancer care is also complex — and proactive, together-teamwork is critical to the success of their collective care.
• The serious complications and side-effects of some treatment, as well as their impact on their hearts and lives of the people receiving the treatment.
• The advances in technology and research that are changing best practice care at a rapid pace and must vigilantly be on the care team’s radar.
• For patients to have access to safe and high quality services, it is important that professionals ensure:

  1.  They have the necessary skills to carry out those aspects of cancer care they undertake and there is institutional capacity and resources to support such care (for example, equipment, staffing and skill mix.)
  2. They have clear links and open lines of communication with a range of specialties or multidisciplinary care team required for cancer care, for the purpose of clinical advice, referral and continuing education & awareness.
  3. They follow evidence-based practice or treatment recommendations of a multidisciplinary care team.
  4. They undertake regular review of their performance and contribute to regular audit of their cancer care.
  5. They are actively involved in continuing professional development.
  6. Their patients can make an informed choice about their care, including the options of referral to other professionals or other care centres.

And yet again we see a clear and urgent need for cancer care to be patient-centred! Do you feel the list above includes the aspects necessary for a holistic and effective scope of practice? Let us know in the Comments block below or on our Facebook community page!

We want safe, quality care

If you have been following this blog you will know that we have been calling for safe, high quality care for all people with breast cancer in South Africa.

Helen Joseph Breast Cancer Clinic and Dr Carol Benn

But what exactly do we mean by that?

 

Safe, quality care needs to be the norm everywhere that people with breast cancer are treated. The care that a patient receives should not be determined by where they live or how much money they have. We know that our public facilities have problems.

We’ve all seen the stories in our news media highlighting the poor state that many of our hospitals are in. We also know that the problems are not insurmountable and that there are many dedicated people working to make sure that the standards are raised. There have been calls for politicians to start using public, rather than private hospitals so that they can share the experiences of the majority of our people, and we commend our Health Minister, Dr Aaron Motsoaledi for doing just that.

So, what needs to happen if we are to have safe, high quality care?

All the different clinicians who are part of the team that cares for people with breast cancer must have the technical skills they need , with regular training, to do their jobs properly.

The health care staff must have regular reviews of their performance and they must be actively involved in continuing professional education.

The equipment needed for diagnosis and care must be available, and in full working order. People with breast cancer must be empowered to make informed choices about their treatment. For this to happen, they need to have information they can understand.

The drugs needed for breast cancer treatment must be available when they are needed. There must be no delays or pauses in treatment.

How have you experienced the quality and equality of your breast cancer care?

 

*Photographs kind courtesy of: Mail & Guardian, IOL, Times Live, Health24 & Shout Africa

 

South Africa & Breast Cancer: Great Big Glaring Gaps

In our post, Reality Bites, about the reality of breast cancer in South Africa, we explained what the entire breast cancer basket of services is that one can expect – and has the right to receive. We need to, however, unpack this issue even more.

Specialist Breast Clinics are available in both the Public and Private sectors. Unsurprisingly and inequitably, there are more options in the Private sector.

Specialist Breast Clinics in South Africa

As per the map, Specialist Breast Clinics can be found in the following South African cities:

  • Pretoria
  • Johannesburg
  • Durban
  • East London
  • Port Elizabeth
  • Cape Town
  • Bloemfontein

In effect, this means that if you live in the Mpumalanga, Limpopo, Northern Cape, North-West that there is NO dedicated specialist breast health unit in your province!

This is NOT equal treatment or equitable access which are our basic rights according to the South African Constitution.

A standardised and sustainable Breast Health Policy can change this. 

The Chaotic Complexity of Cancer

Cancer is a complex disease
{ The Complicated Chaos Inside a Cancer Cell }

“There were facets of the complexity of cancer that  I thought I understood as a researcher.  But once I became a patient, it was clear how difficult it is to translate our current understanding of cancer into clinical decisions.” ~ Linda Griffith, Ph.D. (bioengineer and breast cancer survivor)

{ To watch Linda Griffith’s interview about the complexity of cancer, click here. }


Unlike TB or HIV, cancer is not just one, singular disease, with one cause and one form of treatment. FACT: There are 300+ different cancer types. If we look at just that number, we must understand that that means there are 300+ ways of detection, diagnosis, treatment, after-care and support. Additionally, adding to the complexity is each person’s unique personality, unique set of pre-existing health conditions, unique living circumstances (employment, housing, finances, transport etc.), and unique family who are also so much part of the person’s cancer journey.

Because TB and HIV are singular diseases, their treatment policies are fairly simple to have put into place, afford and maintain. However, cancer’s endless complexity makes having a policy for breast health expensive, complicated and difficult to define.

When we shift our perspective from private care to public health care, it is an unavoidable fact that our public health system is in urgent need of a breast health policy which addresses every single aspect of breast health from improving involuntary exposure to environmental risk factors, boosting breast health education and awareness  – all the way through to the upgrading of diagnostic and treatment technology, psycho-social support during and after treatment for both the person diagnosed with breast cancer, as well as their family. Most of all the value of a breast health policy for South Africa would be  the standardization of breast care across the country based on international best practice research.

The article below from Breast Cancer Action packs a punch as it exposes the unavoidable South African reality about the state of our nation’s breast health crisis:


SOCIAL INJUSTICES LEAD TO UNEQUAL EXPOSURES

“… the complex issues of social inequities – political, economic and racial injustices have been largely neglected. The extent and type of toxins we’re exposed to often depends on where we live and work. Poorer communities — both urban and rural — shoulder an unequal share of the burden of exposure to toxic materials.

The social determinants of breast cancer likely contribute significantly to the development and mortality of the disease, and these involuntary factors are shown to be of greater impact on women of color and low-income women, since these populations are at greater risk for exposure to toxins and social injustice-related stresses and the lack of services available on a primary care level to access cancer care easily and swiftly. The delays in diagnostic testing and the impact this has on the start of treatment are issues causing late diagnosis and treatment, and thus the outcomes of treatment are compromised.

Low-income women are also less likely to have access to healthy foods and quality healthcare. Compelling research and simple intuition tells us that true reduction of both breast cancer incidence and death from the disease requires a better understanding of how the complex tangle of the environmental and social factors, genetics and personal behavior results in different outcomes for different ethnic and economic groups.

Working to prevent breast cancer through lifestyle choices ignores the hard fact that we don’t all share equal access to the same “lifestyle choices.” When we focus on the benefits of individual diet and exercise, we lose sight of the social justice issues that limits access to affordable healthy food and regular exercise for many in our society. We strongly feel the best approaches are a combination of individual AND societal changes so that EVERYONE has the option of limiting their risk of getting breast cancer.

{ See more at Breast Cancer Action }


FOLLOW* our blog to boost your impact as a breast cancer advocate! And then, SHARE our blog post as far and wide as you can on your social media accounts and with email contacts!

*The ‘Follow’ button is at the very top of the blog page on the left.