NEWSLETTER - DAY 01
WEDNESDAY 20th MARCH
Deputy Health Minister Gwen Ramokgopa receives a pendant from RRI president Ann Steyn
Making breast cancer a priority B
reast cancer was a leading cause of death in South Africa – and it was vital to make the country’s health system more responsive to the illness. This was the call by South African deputy health minister Gwen Ramokgopa at the opening of the Reach to Recovery International Breast Cancer Support Conference. Welcoming delegates to the conference, Ramokgopa said in many cases women were too busy looking after other people to look after their own health. This meant that many cases of breast cancer were often presented at an advanced stage. “Breast cancer is both a developmental issue and a gender issue,” Ramokgopa said. She added that the illness should be understood within the context of cancers that affect women, within the context of women’s health in general “and that of the women’s agenda in the development of society”. “We also need to improve our data collection,” Ramokgopa said. The deputy minister said breast cancer placed “sharply before us” issues of quality of life for women, access to information and literacy, access to primary health care, access to the continuum of care throughout the health system - including screening and surgery - as well as access to rehabilitation and palliative care services.
By SUE SEGAR “Even in cases of caring for survivors and support groups and supporting survivors, it is women who often sacrifice other opportunities to look after their beloved ones who are affected. “If there is a problem in the world that presents itself as an opportunity for women to stand in solidarity to resolve, it is breast cancer.” Ramokgopa said women must stand together to influence policy and to ensure there is a research agenda which works towards understanding “what makes women more vulnerable to breast cancer”. “Many of us actually don’t know the extent of this disease in our communities. It is in this context that, in South Africa, we are strengthening surveillance systems. “We have instituted a compulsory national cancer register to make sure that every case is reported. In addition, we have identified breast cancer as one of the focus areas in our non-communicable diseases strategy. “We have also appointed a ministerial advisory committee specifically to focus on cancer and we can assure you breast cancer – as well as cervical cancer - will receive priority attention.”
AN arrow and a star M
ashego Makola is an articulate, strong and determined young woman. She has come a long way since she was diagnosed with breast cancer at the age of 35, when she describes herself as becoming ‘still, quiet and completely numb’, unable to absorb the devastating news. Two years later, she is not only a breast cancer survivor but sees herself as an arrow and a star, because ‘stars shine brighter the darker it is, and an arrow has a great reach.’ This is Mashego’s purpose in attending the Reach for Recovery Breast Cancer Support conference at the Cape Town International Convention Centre in Cape Town this week. She says she is really grateful to the Department of Health and Reach for Recovery in Bloemfontein who gave her the opportunity to attend the three day conference so she “can learn, gain experience, network and have a bigger face and voice for Reach for Recovery nationally and internationally”. It is not the first time a story like Mashego’s has been told. She describes how she found the lump in September 2010. She says, “I felt it and realized it was big. I remember feeling a huge thump in my chest as I realised I was in trouble”. Ironically she struggled for three months to get someone from the medical profession to take her seriously – they said she was too young, was not on contraceptives, didn’t have a family history of breast cancer and as far as doctors could tell had nothing that linked her with the
By KATHY MALHERBE disease. Three months’ later she took matters into her own hands and, as she was on medical aid, insisted on a mammogram. As one of the eight volunteers at Reach for Recovery in Bloemfontein, she says she has counselled woman as young as nineteen who have been diagnosed with breast cancer. Age is not a determining factor although your chances do increase as you get older. Mashego says she was lucky to have an empathetic female radiographer who specialises in breast cancer when she went for her tests. “The first moment of diagnosis is critical… The comfort and reassurance they gave me was incredible and I was very lucky. They told me they were going to save my life.” Mashego’s breast cancer turned out to be Invasive Ductal Carcinoma and on the accepted progressive scale of C1 - C4 to determine the severity of the cancer, she was on the cusp of C2 and C3. She was told she needed a mastectomy and possible removal of glands under her arm if the cancer had spread as well as chemotherapy and radiation. “I believe breast cancer is an emotional, physical and spiritual disease. Apart from the physical diagnosis and surgery there is an emotional and spiritual journey you have to go through as well which can be conquered with love and support. Masego says she had to be spiritually ready for surgery and
postponed it for a month. ‘My surgeon understood how I felt and together with my spiritual mentor and family support I prepared myself for surgery. I became strong enough to say, “Whatever happens I am going to live this and see it through.” She said the chemo, every three weeks, wasn’t as bad as she expected and she managed to work through her treatment – just taking a few days off from her job as a Committee Admin officer at the Central University of Technology in Bloemfontein. “My hair didn’t really fall out but I looked like I had stuck my finger in an electric plug.” When asked what the most difficult part of the ten months was she says, “The cancer was not my mountain… although it was difficult, I have other mountains to climb in my life.” Does she believe there is a stigma attached to breast cancer? She says, “yes in a way… Many women believe they have been cursed, bewitched or punished and the first thing they do want to do is be prayed for. I remember having an ‘ah ha’ moment when I heard a pastor on television saying that breast cancer can possibly have a spiritual cause but it has to be dealt with both medically and spiritually.” How does she feel about going for a checkup every six months? “Lucky,” she says. “I am privileged in that I am on medical aid and am able to be checked. Apart from normal blood tests and x-rays, once a year I have a bone scan to check for any spread… Not all women are able to do this.”
Breast cancer in africa ‘getting worse’ By SUE SEGAR
he problem of breast cancer in Africa was considerably more common than most people believed – and current health resources are struggling to deal with the large numbers of patients. This was the message from Professor Eugenio Panieri, head of the Breast Clinic at Groote Schuur Hospital who was speaking during the first plenary, entitled Setting the Scene: Breast Cancer in Africa. Panieri said breast cancer was in fact “very common” in African communities. The overall incidence of cancer in women in Africa was, proportionally, “about a third” of those in the UK, France and Sweden, he said, but the chances of a patient dying in Africa were “at least twice as high” than those of a patient in a better resourced country. Panieri believes that the problem is destined to become much worse. With an expectation that the over60 population in Africa will increase fourfold over the next forty years, it is assumed that the breast cancer workload will increase fourfold in parallel with that – as age is the biggest risk factor for breast cancer. Panieri said the rate of breast cancer deaths were considerably higher in Africa than in other parts of the world. This is because most primary health care spending and projects are focused on the infectious illnesses which plague the continent. “Breast cancer is the most common form of cancer death on the continent,” he said. “The problem is that it has not been a public health priority at all. The limited resources mean that patients who have not been diagnosed in time arrive at clinics with advanced disease which then has to be treated.”
Professor Eugenio Panieri
Breast cancer is killing an increasing amount of people in Africa
Panieri said about 50 percent of deaths in Africa are caused by infectious and parasitic diseases – “a combination of HIV, TB and malaria”, while cancer accounts for about four percent of deaths on the continent. In richer countries, cancer accounted for about 12 percent of deaths. Some studies had shown that the overall incidence of cancer in women in Africa was, proportionally, “about a third” of those in the UK, France and Sweden. However, the chances of a patient dying in Africa were “at least twice as high” than those of a patient in a better resourced country. “So cancer may not be as common as it is in the western world - but people die of it much more commonly in Africa. Western countries have a higher incidence but the great majority won’t die of it.” Panieri said it was crucial to lobby health authorities to provide facilities that are competent to deal with breast complaints for the least privileged people – “the uneducated, underprivileged, informal dwellers. “A programme of health volunteer house visits and clinical examinations is beneficial. But what is really needed is diagnositic clinics with no obstructive entry criteria, so patients can arrive and be seen – with no need to be referred. “There they should be able to be seen by a doctor, have a biopsy and have a mammogram all at one time. There should be one-stop complete evaluations … that can then diagnose the cancers, and reassure the majority that don’t have any clinical problems without any unnecessary delays. “This would cut out the logistic interruptions, such as going to see a doctor in one place, to have a biopsy somewhere els and a mammogram in a third place and eventually six weeks later when you find out that none of your results, you start again. “We want a centralised diagnosis involving a simple one-stop visit, where everything is done at the same time. Our key drive is to get that right.”
courage of a Two -time survivor By WILMA STASSEN
abulile Madondo is a vibrant 58-year-old from KwaZulu-Natal. And she has survived breast cancer… twice. Before 1996 she had never done a breast self examination. One night she was woken by something “falling off” of her breast, and the next morning, not sure whether she dreamt it or not, she decided to feel if anything was amiss. That’s when she found a large lump in her right breast. She went to the doctor who then did a biopsy and two days later she received the bad news – she had a cancerous lump the size of a golf ball and she had to have a mastectomy – removal of the whole breast. “I feel so sorry for that doctor, the way I cried in his office that day,” Jabulile said, looking a little embarrassed. The doctor answered all her questions and addressed her concerns, and soon she realised how fortunate she was to have
access to private medical care and all the information she needed to understand what she was going through. “And then I thought about the rural women who don’t have any information or easy access to doctors, and I realised how lucky I was,” said Jabulile. Her mastectomy was done the very next day and soon after that her radiation and then chemo started. “I was very lucky to have a wonderful oncologist who explained everything to me in the simplest form,” she said. Throughout her treatment and recovery, her thoughts kept going back to the rural women and what they must go through in these situations: “Will they understand what is happening to them?”, “Will they know why it is important to comply to treatment?”, “Will they understand the side effects?” Chemotherapy was hell for Jabulile and she suffered severe side effects from the treatment. “I was so excited when my hair
Hannah Bless, from Thausane in Germany, explains how the silicone prosthetics they produce are very close to “the real thing” in both look and feel. “These products help restore breast cancer survivors’ outer appearance and make them feel safe. But apart from the psychological advantage it also has a medical purpose – to help the patient maintain the weight balance and therefore prevent pain in the neck and back,” said Bless.
started coming back after chemo – it was the most beautiful hair that I’ve ever seen!” She made a complete recovery and started going for routine mammograms, but in 2007 they found cancer in her left breast too. “I was even more devastated than the first time I was diagnosed. I couldn’t believe I had to go through all of that again.” Luckily the cancer was caught at an early stage and the lump could be removed without losing the whole breast. She also only had to undergo chemotherapy, and no radiation. Her experience with breast cancer made her realise that she wanted to do more for rural women, and she has since became involved with an organisation called Sinomusanothando Community Development, which means “bringing hope, care and love.” Sinomusanothando works in the community of KwaNyuswa west of Durban where they inform rural women about cancer, especially breast and cervical cancer, and help them access diagnostics and treatment. “In these communities women don’t talk about these problems, and by the time they ask for help it is often too late to save them. Sinomusanothando is making a big difference in these women’s lives, in fact, in many cases I think it saves their lives and brings them hope.”
Prescribing medicine doesn’t equal taking medicine T
a k i n g prescribed medicine and completing the full c o u rs e does not appear to be a p ro b l e m experienced in South A f ri c a only. A presentation b y Ye h u i Zhu, a nursing sister s p e c i a l i sing in breast cancer in S h a n g h a i, revealed that even p a t i e n t s who are on hormonal t h e ra py for breast cancer have a v e r y poor adherence to taking t h e m . T he five year retrospective s u rv e y s howed that only 60% of t h e p a t i ents who started taking h o rm o n e therapy were still t a k i n g i t after five years. C o n s idering that 1.38 million p e o p l e were diagnosed with b re a s t cancer in 2008 a lone, a n d t h a t about 75% of breast c a n c e rs are estrogen positive, re q u i ri n g hormone therapy – it is a n a l a r ming result. Particularly when hormone therapy is c o n s i d e red to be the most e f f e c t i v e form of treatment if t a k e n o ver a period of five years. T h e problem appears to be t h a t p a tients are seeing bad p re s s about the drugs they have b een prescribed. They g a t h e r their information from n o n - pr o fessionals and web s i t e s w hich are not necessarily a c c u ra t e , rather than medical p ro f e s s i onals. Patients base their d e c i s i o n s on this information a n d d o n ’t take into account the e f f i c a c y of the hormone therapy. S i d e effects also play a major ro l e i n determining whether a pa t i ent will intentionally d i s c o n t i nue with the medication and particularly in nonm e n o p a usal women. Tamoxifen, f o r e x a mple, can have unpleasant s i d e e f f ects: These include: hot f l a s h e s , headaches, joint pain a n d w h ere there is no medical i n s u ra n c e, problems with the c o s t o f t he medicine. A l t h ough the researche was based on hormonal therapy p re s c ri p tion re-fills over a p e ri o d of five years, Yehui Zhu
By KATHY MALHERBE says that filling a prescripti o n does not necessarily mean t h e patient is actually taking t h e tablets so she feels that there i s a need for more in-depth studi e s to determine the extent of no n adherence. Zhu also believe i t is the responsibility of oncolo g y staff to establish communicati o n channels, educate the patien t s and assist with unpleasant si d e effects. It has been proven th a t hormonal treatment is pivot a l in reducing mortality in brea s t cancer patients who are E R positive so it is essential th a t as many patients are kept o n treatment for the full five years .
Patients need to take teir meds
Susan du Preez explains how the lingerie, especially designed for breast cancer survivors that have undergone mastectomy, works. She is the local exporter of the French/German Thuasne Thämert range of products. “The lingerie is not only aesthetically pleasing, it serves a medical purpose too – the bra can house a prosthetic breast and is specifically designed to prevent lymphodaema.
The human immunodeficiency virus (green)
Breast cancer in hiv-positive women H
IV and cancer are often diagnosed too late because of stigma and shame. “Shame about her cancer stopped my sister from asking for help sooner,” a Khayalitsha woman, Monica, told the audience at a talk at the 17th Reach to Recovery International Breast Cancer Support Conference currently underway in Cape Town. Monica’s sister lived with HIV for years without telling anyone, not
Dr Jenny Edge
By WILMA STASSEN even her family. And when a lump developed in her breast she didn’t want to tell anyone in fear of also revealing her HIV status. “In my community there is still a lot of stigma around HIV and even your family won’t accept you, or they will treat you differently,” she said. “And most people think that if you have cancer you are going to die.” According to Dr Irene Boeddinghaus, a Cape Town oncologist, HIV-positive patients often present late for breast cancer treatment. The cause for the late presentation is not well understood, but because HIV does not aggravate or mask the development of breast cancer, experts speculate that there may be social and economic reasons for it. “People don’t always have the financial resources to get to a health facility for minor ailments and only go when they are seriously ill – therefore eliminating the chance of early diagnosis,” said Cape Town surgeon, Dr Jenny Edge. “And then there is
also the possibility, as was the case with Monica’s sister, that the stigma involved with cancer may cause people to present late.” Apart from the social factors surrounding breast cancer in HIVpositive patients, this co-morbidity also present very specific challenges for oncologists who have to treat it. “An oncologist can kill someone with chemotherapy if you don’t know that the patient is HIV-positive, therefore you have to test for it,” said Boeddinghaus. “You can’t use the same chemotherapy for HIVpositive and HIV-negative patients as the interaction between cancer drugs and antiretroviral therapy can lead to toxicity. “Often women don’t even know they are HIV-positive and they get two life-threatening diagnoses at the same time.” According to Boeddinghaus, HIV-positive patients tolerate chemotherapy poorly. HIV also impairs systems in the body, like the immune system, white blood cell count, and bone marrow that is needed to fight cancer in the body.
This newsletter was produced by the team at HIPPO. www.hippocommunications.com
the first newsletter of the reach to recovery conference in Cape Town