RRI newsletter day 2

NEWSLETTER - DAY 01 THURSDAY 21th MARCH

cancer care is a human right B

reast cancer patients in South Africa can wait up to eight months to receive a confirmation of their diagnosis – and another six to nine months, in some cases, to start treatment.

These delays mean that thousands of cancer sufferers in the country are diagnosed too late for cure and can then only be treated for pain management until they die.

Even more shocking is the fact that those patients who should be receiving pain management treatment are often unable to access this at their district level hospitals.

These were the sobering revelations made at the launch of the Cancer Alliance Patients Rights Charter today.

Timed to coincide with Human Rights Day, the charter calls for cancer patients to be afforded human rights in treatment and care.

It names cancer as a “critical public health problem” which must be established as a priority matter on the South African public health agenda.

Voicing deep concern at the profound impact of cancer on millions of human lives and on productivity and development in SA, the charter calls for the promotion of humanitarian treatment of people with cancer and states that access to quality health care is a basic human right.

“South African health care resources are currently limited and must be distributed wisely, equitably and in a sustainable manner,” the charter states.

“Government should allocate cancer prevention and care resources appropriate to the relative human and economic burdens of these diseases. Currently achievable improvements in cancer survival remain unrealised due to insufficient emphasis on prevention and screening.”

The Cancer Alliance, formed in January 2012, is South Africa’s first umbrella group of 19 cancer advocacy nongovernmental organisations and advocates, representing about 80 percent of cancer NGOs. “In marking South Africa’s Human Rights Day, the members of the Cancer Alliance would like to draw attention to the fact that The International Covenant on Economic, Social, and Cultural Rights recognises the right of everyone to the enjoyment of the highest attainable standard of physical and mental health and the creation of conditions which would assure to all medical service and medical attention in the event of sickness,” the alliance said in a statement.

By SUE SEGAR “Through the publication of its Cancer Patient’s Rights Charter, the Cancer Alliance and its membership are setting out the principle they will uphold when entering into dialogue with the various stakeholders involved in cancer control in South Africa.

“These dialogues will include: access to health facilities and cancer diagnosis and care services; the provision of essential drugs, especially with regard to palliative and pain control treatment; to establish a cancer registry that is well funded and resourced and to pursue a national public health strategy, in controlling the burden of cancer.”

The Cancer Alliance has drawn up a set of priorities that it will be advocating for.

These include the creation of a national cancer control plan, as well as the development of data and registries which, Cancer Alliance exco member Lauren Pretorius said, is vital “as we cannot develop comprehensive strategies for those human rights until we have the data to know what the actual problem is”.

Other priorities are infrastructure building and costing as well as the stigma and myths relating to cancer which patients face in their communities.

“The Cancer Alliance is calling for all key stakeholders, including government, industry, patients and health professionals, to work together to identify appropriate solutions to improve each aspect of cancer care available and provided to all South Africans, in line with the Bill of Rights, which are upheld in their organisation’s Cancer Patient’s Rights Charter.

“South African cancer patients face multiple issues on a daily basis. This Cancer Patient’s Rights Charter, the establishment of a Ministerial Committee on the Prevention and Control of Cancer and the steps taken today regarding a national breast health policy for South Africa are vital steps to ensure the protection and promotion of human rights and dignity in cancer control and treatment for all South Africans”.

Botha said the launch of the alliance is “where the hard work starts”.

“We are all committed. This is what we do.”

Grief is a normal reaction A

ll cancer patients experience periods of sadness or grief – with studies showing that about 25 percent of all cancer patients experience major clinical depression.

This was the sobering statistic put forward yesterday by Cathy Hirsch, a member of the Reach to Recovery International Advisory Committee.

Hirsch, a breast cancer survivor who founded the non-profit foundation Within Reach, said the suicide rate among cancer patients is ten times higher in the US than it is in the general population.

According to the World Health Organisation, women are 50 percent more likely to suffer from depression than men, she said.

“Considering it is more common in women than men, and more common in cancer sufferers … it is clear that depression is a major problem among women with breast cancer,” she said.

Hirsch was speaking during the session on Quality of Life after Breast Cancer Diagnosis.

She was joined on the panel by Ranjit Kaur, president of the Malaysian Breast Cancer Council and Reach to Recovery International board member as well as Margaret Fitch, head of Oncology Nursing at the Odette Cancer Centre in Toronto, Canada and Jane Turner, Associate Professor: Psychiatry at the University of Queensland, Australia in the first session of the discussion.

Hirsch said triggers for anxiety or depression include a fear of death that might accompany the illness, the interruption of life plans that the illness brings, changes in body image and self-esteem, changes in social role and lifestyle and financial and legal concerns.

“One might have been thinking of having a child or starting a job, travelling or seeing the world or spending time with a grandchild.

When you receive a cancer diagnosis, those plans have to take a back seat,” Hirsch said.

“People have to adjust to accommodate the changes a cancer diagnosis brings. A wife or mother who is used to taking care of people will now need someone to take care of her …

By SUE SEGAR “Many people find that they are now too tired to keep up with their previously active lifestyle. Additionally, many people are, unfortunately under-insured for their medical expenses.’

“All of these things can affect a patient’s mental health. Sometimes it becomes overwhelming and that’s when they need help from a counselor or a specialist.”

Citing some of the cancer-related risk factors for major depression, Hirsch said those at an advanced stage are more likely to be depressed than those at an earlier stage of illness. Poorly controlled pain is also more likely to cause depression. If a person is already depressed at the time of diagnosis, or has a lack of family support or other stressful life events, they are more prone to further depression.

A history of alcoholism or drug abuse or having other illnesses at the saem time could also result in more risk for depression.

Hirsch listed a number of ways to deal with depression.

These include: • Make an appointment with a mental health professional as soon as possible; • Continue any treatment recommended by the professional until symptoms improve; • Engage in physical activity if possible; • Understand that negative thinking is a symptom of depression and should improve with treatment; “All those around the patient should offer support, Hirsch said.

Hirsch added that those patients who spoke out about their experiences with breast cancer were more likely to experience emotional growth than those who “soldiered on as if nothing had happened.”

“Some patients deny that they are feeling anxious or depressed because they want to protect their loved ones or themselves from unpleasant feelings. It’s not a good idea. Talking about it puts the experience into perspective and validates the patient’s concerns.”

Kaur, in her address, spoke of the burdens that arise for caregivers dealing with cancer sufferers.

Coping with the impact of the cancer itself as well as the treatment, the loss of a breast and the loss of hair, among other experiences were all things the carer and loved one also had to go through,” she said.

“It’s because they care for you,” she added.

Husbands sometimes became reclusive for a while as “they really don’t know what to do. Sometimes they move to a different room as they are so afraid that if they touch her she might be in pain.”

Carers and loved ones also had to live with the fear of recurrence, living with uncertainty and the change of dynamics in relationship – as well as the financial issues and other responsibilities. They also had to work as a mediator and often became tired, burnt out and emotionally exhausted.

“Carers have to deal with the practical issues, including time away from their own work and putting their other responsibilities on hold. Sometimes when they return to normal life there is a void.

A lonely feeling of not being needed. If th patient dies, the carer needs counseling.

They also need to be cared for,” Kaur said.

Fitch addressed the issue of the fatigue and cognitive changes that come about as a result of cancer treatment.

“Some years back, it would have been nausea and vomiting … but now it is fatigue and cognitive change,” he said.

Research on how to manage this fatigue had shown that mproving sleep, maintaining a routine pattern and regular exercise as well as healthy eating, among other things, helped with the fatigue.

In an address entitled Depressions and Breast Cancer: Causes and Treatment, Turner, said depression can hit anybody regardless of how well adjusted they are.

Among the techniques of dealing with it are cognitive strategies, like having an internal dialogue when depressed, reframing thinking as well as exercise.

Regular mammograms are vital

Making the right choices

By WILMA STASSEN

S

haron Kouta is an energetic 53-year-old woman from Eerste River in Cape Town. On her 50th birthday she was diagnosed with breast cancer, but her battle with the disease began long before that. She also supported her sister when she was diagnosed with the disease, and again two years later when she relapsed.

But luckily Sharon is a trained social worker and helping and supporting others is second nature to her.

“My journey with breast cancer began long before my own diagnosis in 2010,” said Sharon.

“In 2004 my sister was diagnosed with breast cancer at the age of 41, and I was with her when she got the news. Being a social worker I ‘carried’ her through it.”

Her sister underwent surgery, radiation and also reconstructive surgery, but two years later she got the news that the cancer hadn’t just returned, it had also spread. “I saw how it affected her and affected the family, especially our parents,” said Sharon.

Although she had only had a mammogram 10 months earlier, Sharon decided to make use of her medical scheme benefits before moving to a new scheme, and went for another.

To her surprise they found clustered micro calcifications in her left breast and she decided to see the same oncologist that treated her sister, Sharon Kouta Dr Jenny Edge.

“While waiting at the doctor’s office I Googled ‘clustered micro calcifications’ – that is the worst thing a woman can do. I was terrified by the time I went in for my consultation, but Dr Edge explained to what it meant and what’s going to happen,” said Sharon.

The doctor took a biopsy for testing and recommended that if the result came back as cancer, Sharon should consider a bilateral mastectomy, given the speed at which it developed (only 10 months) and her sister’s history of recurring cancer.

After losing her father in May that year, on her 50th birthday Sharon went back to Dr Edge to get the results from her biopsy, and it tested positive for cancer.

“Because I work in the field of gender-based violence I have very strong views about a woman’s choice to make decisions about her own body,” she said. So despite the disapproval from her husband and others though it was unnecessary to remove a “healthy breast”, she decided to go ahead and have a double mastectomy.

“I think my training as a social worker helped me to deal with it, and watching my sister go through everything she did, making the decision was easy for me.”

After the surgery Dr Edge told Sharon that she was “very glad” they removed both breasts. Tests of the tissue of the seemingly “healthy breast” revealed the start of cancer there too.

“If you think about it I was really very fortunate to have been diagnosed so early – so many women are only diagnosed very late, or they have no medical scheme to get the right treatment when they need it,” she said.

Focus on living with metastasis

By KATHY MALHERBE

L

ess than 5% of breast cancer research focuses on metastatic cancer.

Musa Maya a 23-year survivor, advocate and author of three books on breast cancer in the United States, says, “In the past, metastatic breast cancer (MBC) was considered an immediate death sentence. When I first started working with metastatic patients the only resources available were ‘end of life’ related: hospice information and even how to cash in your life insurance policy.

“Breast cancer support organisations offered surprisingly little for women with MBC and little research has been done on these women to determine what they need in terms of information, support and practical services.

We know metastatic patients can live much longer and enjoy a fulfilled life but there is little support and information for these women and we wanted to create a forum where they feel safe, informed and supported. MBC is completely different from confined breast cancer and needs a completely different level of support. Although

Maya’s cancer has not metastasized, she feels so strongly about this that she has become a long time patient advocate on behalf of women with metastatic and advanced disease.

Asked why she has chosen to focus on metastatic and advanced disease she says it is a difficult topic to talk about and there is far too little focus on living with metastasis. “When patients are uninformed and receive little support stigma and fear take over,” she says.

Mayer says: ‘This is what we don’t know about MBC’ • A measure of the incidence and mortality • We don’t keep track of how many people are alive with metastatic breast cancer • We don’t know prevalence or length of survival – even though some clinical trials have been done it is not a good measure of the population as a whole “How can we plan what we don’t count or measure and have no no knowledge of the extent of what we are dealing with?”

The need to focus on metastatic patients was made clear a few years ago when Maya created a forum for women who live with advanced disease and

Carol van de Velde is manning the stand from Well Woman Diagnostics in Rondebosch in the exhibit hall at the 17th Reach for Recover International Breast Cancer Support Conference.

asked them to write into her. Within a few days she had over 2000 pages from women talking about living with the advanced disease. So how were they doing? Surprisingly well, despite having multiple side effects and symptoms but their stories also told of a need to network, have support groups and have access to accurate information. This is testimony to the fact that there is a huge need for intervention globally.

“We need to offer emotional support and information to women around the world, says Maya. High levels of knowledge lead to lower anxiety and stress and perceived support leads to lower anxiety, depression and sexual problems.

Maya says there is also a difference in mortality rates in undeveloped countries where poverty, cultural barriers, stigma and fear lead to misinformation and little access to detection and treatment when the disease is still curable.

“There is also the issue of compliance with treatment related to lack of support – an issue that advocates and organisations neglect.

Large proportions are given hormone therapy yet compliance is really poor.

Why? Education by professionals about the efficacy of hormone therapy is really important. Some patients feel if they are not on high doses of chemo but rather on hormone therapy they are not receiving the best care.

MBC patients are our forgotten heroes, forgotten by research and by support groups.

Mayer says, “With MBC, silence is the enemy, isolation is the enemy and fear is the enemy. We can and will change that.”

Cancer still highly stigmatised around the world I

magine being diagnosed with cancer. And then imagine not being able to tell anyone about it out of fear that they might blame you, or reject you, or avoid you, thinking you might infect them with it too.

This, unfortunately, is a reality for many cancer patients around the world, Claire Neal from the Livestrong Foundation told the audience at the 17th Reach To Recovery International Breast Cancer Support Conference currently underway in Cape Town.

“Getting a cancer diagnosis is hard enough, a person shouldn’t have to deal with stigma on top of that,” said Neal.

The Livestrong Foundation did an audit of the media coverage of cancer in 10 countries around the world and came up with some concerning results: in all the countries reviewed, a cancer diagnosis was commonly associated with death; that stigma around cancer resulted in silence about the issue and patients not speaking about their conditions or looking for support; but on the positive side there was a true recognition of the power of cancer survivors.

Stigma even affected the language the media used to portray the disease.

In Italy, for example, they found that the word “cancer” wasn’t commonly being used and that the media there referred to it as “tumour” instead.

“The word ‘cancer’ has become so stigmatised that the advocacy community and the media was starting

Claire Neal

By WILMA STASSEN to use more neutral words to talk about it more easily,” said Neal.

As a result of surveying public perceptions, the Livestong team realised that a lack of information and education on cancer has led to some dangerous misconceptions and myths.

“In Russia many parents thought that cancer in children was incurable and therefore didn’t take their children for treatment, in China many thought that people with cancer brought it on themselves, and in France the media was repeatedly referring to cancer as a taboo,” said Neal.

“Here is South Africa we saw stories highlighting the increase in survival rates, so there are reasons for hope as well.”

Neal went on to explain the extent of the stigma cancer patients often have to endure. She identified three different categories: 1.

Self stigma where the person with cancer personally feels shame or guilt around their diagnosis.

2.

Perceived stigma where the person perceives that others are negatively judging them based on their cancer diagnosis.

3.

Active stigma, for example a husband that leaves the wife because of the stigma around cancer, or an employer who fires an employee because they think a cancer survivor is in constant pain and can’t continue to work, or neighbours who isolate a person in their community because they are afraid of catching cancer and don’t want that influence in their community.

According to Neal, there are beliefs that if you talk about cancer you are “opening the door allowing it into yourself or your family”. This creates a culture of silence which is difficult to break because it is more difficult educating people because no one wants to talk about it. “It also creates this blaming where they think that people with cancer are to blame for their cancer,” said Neal.

More alarming was that stigma

Living with stigma

was also having an impact on access to care. “Even when there were great support services stigma was keeping people away from getting the care they need.”

The fear of result is one of the major reasons people don’t get screened. Their research showed that 42 percent of people said that fear of result was the reason for not getting screened. This, in turn, leads to late diagnosis – in developing countries over 80 percent of cases are presenting a stage where it is incurable.

“It creates a self-fulfilling cycle because people wait to get diagnosed, and we have people tell us over and over again: ‘If I have cancer, it is not treatable – so why would I want to know early? I’d rather be happy and go as long as I can before I know’. So they don’t go for treatment, and they die, and then people in their communities think that cancer can’t be treated,” she said.

In order to break the silence and address some of these misconceptions around cancer, the Livestrong Foundation has rolled out an antistigma initiative in South Africa and Mexico. These were the pilot projects, and the initiative will also be implemented in other countries.

Self examination is vital to catch cancer in its early stages

Not a victim, but a warrior...

By KATHY MALHERBE

A

nn Williams, 55, is a breast cancer survivor and works for Reach for Recovery in Kimberley. She is a nursing professional and knows the importance of self- examination so when she was doing a routine self-examination in December 2005 and felt a lump in her left breast, she sought medical help immediately.

She says, “I went to a doctor who did a fine needle biopsy and told me it was ductal cancer. Because I had discovered the lump so early it was still small and encapsulated (so not yet invasive). I did however, have to have a mastectomy and some of my axillary glands removed - I was lucky not to have chemotherapy. I was however, on hormonal therapy for five years.”

Ann Williams

So how did she feel when she was diagnosed? “I was shocked but I knew what I was dealing with because I am a nursing sister and decided I was going to win the battle. She says she had to ‘pick up her weapons and fight’. “I realised the road ahead of me offered two choices. To be the victim or the warrior.

I chose to fight and kept fighting until my name became, ‘Victory’.

“When you are this road, your fighting spirit starts and ends with one word, ‘family.’ I could not have got by without their support and the support of friends. A burden like this is so much lighter if shared with others.

My favourite thing to do is spend time outdoors with my family – they still create special moments in celebration of my victory over cancer. I want to keep on living…”

Ann chose to have reconstruction in 2007 after her mastectomy and is very happy with the result. “I know it is a personal choice, but I didn’t like using the external prosthesis and I am very glad I chose reconstruction - I am exceptionally happy with the result. My biggest dream is that I would like each and every woman who can’t afford to get reconstruction to have access to it if she chooses to.”

In 2006 – a year after diagnosis, Ann was in the clear and not only decided to live her life with gratitude and perseverance but decided to get involved in creating awareness about breast cancer and bringing it to

everyone’s attention. This is when she joined Reach to Recovery in Kimberley and together with 22 other volunteers they educate, inform, support and create awareness.

Northern Cape is the largest province in South Africa even though it has a small population. Anne says, “It is a poor province so we do have challenges in terms of access to medical care. Our main priority at Reach to Recovery is hospital visits for breast cancer patients before and after surgery. There are two government hospitals with four wards for breast cancer patients and a private hospital, Netcare. We visit patients regularly and have a good relationship with nurses and oncology staff in these wards. Working together with the various disciplines enables us to provide support of the highest quality.

Ann says, “Reach to Recovery also runs specific projects and this year we are aiming to provide prostheses for those who can’t afford them.

“Cost effective education rogrammes in the Province should be based on teaching breast health examination. Health education is only worthwhile if access to health care is available.

“We must all work together to ensure that everyone gets support.”

“Our main focus is always the patient – she is the most important.

Our volunteers are well trained and all special and do an excellent job. They are our Kimberley angels.”

‘men don’t get breast cancer’

By WILMA STASSEN

B

obby Were (57) walked around with a lump in his breast for two years, but didn’t think much of it because “men don’t get breast cancer”.

As the time passed, the lump grew in size and became quite irritable, but still Bobby didn’t think it was serious. “I showed a friend who said that it’s just an infection in one of the glands and that he also got it from time to time,” Bobby said, who is a smallbusiness owner in Polokwane.

One day he went to collect his wife at the doctor’s office when she went for an annual mammogram when she suggested he show the doctor the lump on his breast.

“The doctor gave it one look and said: ‘that’s cancer’,” said Bobby. “I didn’t believe her and was quite annoyed that she would say something like that from just looking at it. Who the hell did she think she was?”

On the insistence of his wife he went to a surgeon who wanted to remove it the very next day.

Although Bobby agreed to have the lump removed, he still didn’t believe it was cancer. “I thought this was a big fuss over nothing.

“Before going into surgery the doctor said that if they open it up and find it to be cancer, they will have to do a mastectomy (removal of the breast) and insert drains for the lymph nodes. So when I woke up after surgery and felt the drains coming out of my side, that was the first time I actually realised that I had cancer,” said Bobby.

“Then I started chemo, and that was the real killer.” But it was in the waiting room when he went for his chemo that he started chatting to other patients, sharing stories, empathising and relating to them. “I started getting

involved with cancer support groups and organisations, and today I am a volunteer with Reach to Recovery, TLC (Tough Living with Cancer) as well as CANSA.” Having a phobia for needles himself, Bobby said that he found that he can really relate to the fear and terror young children go through when receiving chemotherapy. He often visits newly diagnosed patients, or people that have undergone cancer surgery as well as the children’s oncology ward to offer support.

“Breast cancer opened my eyes to a different world. You realise you can’t take money with you. It really changed my outlook on life.”

For other cancer patients Bobby wants to say: “Don’t lose hope – cancer may be a killer disease but it can also be cured. There is so much that can be done.”

Bobby Were

Emily Mkhize puts the finishing touches on a pair of beaded sandles, sold to raise funds for the Sizanthando Community Project in KZN

‘Until cancer do us part’ T

he impact of cancer isn’t limited to the patient, it is hard for the spouse too – especially in the African culture where men don’t talk about breasts, Mutua Mutua, the husband of a Kenyan cancer survivor told delegates at a breast cancer conference in Cape Town.

His wife was diagnosed 10 years ago and has since recovered completely, but it wasn’t an easy journey for either of them.

Mutua Mutua

By WILMA STASSEN The socioeconomic and cultural circumstances in Kenya have provided some unique challenges.

“Medical examinations are a luxury few Kenyans can afford. People only go to the doctor when they are sick,” said Mutua. “Early detection of diseases like cancer are virtually impossible in my country.”

This was also the case for Mutua’s wife who only went to the doctor when the lump in her breast was already very large. And when the results from the biopsy returned, the doctor insisted the breast be removed immediately.

This provided the first obstacle.

“It is difficult for a man from my culture to think of a woman without breasts,” he said honestly. “And the women know this too, so they feel defective.”

A lack of understanding about cancer has also lead to misconceptions and stigma, and many actually believe that it is curse or punishment for some wrongdoing by the individual or their forefathers.

Struggling to deal with the situation, Mutua looked for support and turned to Google to find help, but there was no organisation offering help for men. “In Kenya you won’t get men to sit together to talk about breasts. Only women go to these discussions and men who go are considered freaks,” he said.

The next big obstacle for the average Kenyan man with a wife who has breast cancer is the cost. Ten years ago when Mutau’s wife was being treated the oncology services in the public sector were dismal, and the only proper treatment available was in private hospitals. Despite the fact that they belonged to a medical scheme, they still incurred great costs.

“For most people in Kenya, cancer equals death. And most men will be wondering if they should spend this money if his wife is going to die anyway. This could be the money that pays for the child’s school.

“How does that make me feel as a man? I married her because I can provide for her. But now I can’t.”

At this point, Mutau says, many people turn to traditional cures or cause men to withdraw from the woman. “I know a few ‘cancer widows’,” Mutau quipped. “Because although the vows say ‘until death do us part’, the men left when the woman was diagnosed with cancer.”

To help Kenyan couples overcome a breast cancer diagnosis, Mutau is starting a support group for men, called Stronglink.

“We want to create more awareness of breast cancer and educate men from an early age.

Before the disease gets to him. Then he will be prepared to deal with it,” said Mutau.

This newsletter was produced by the team at HIPPO. www.hippocommunications.com