Nothing can compare to the fear experienced when sitting in the doctor’s office and hearing the word cancer.
I casually interviewed several breast cancer patients and survivors (62) in Rwanda and USA and 49 of them gave me similar responses: they were shocked, bewildered, stunned and more or less could not remember what was said after the doctor’s announcement of the diagnosis. This is why a patient needs to have somebody, a family member, friend or volunteer escort when receiving this kind of news. Surprisingly, I found out that accepting and absorbing the news of a cancer diagnosis is the key to the coping process.
For the past three months I have been in Rwanda and taking in the impact of breast cancer and what is being done about it and comparing it with what’s happening in the USA where I live.
I must confess, the picture is much better today than it was when I first came to Rwanda in 2007. Thanks to the government of Rwanda for the major strides made, we even have Oncologists and a Radiotherapy Center. According to recent report from RBC “cancers are among the leading causes of morbidity and mortality worldwide. In Rwanda 1,0704 new cases and 7,662 a year (Globocan 2018)” Marc Hagenimana. Cancer Epidemiology in Rwanda Figure, shows Breast Cancer at 35% as the number one on the Top 10 female Cancer sites, followed by Cervical Cancer at 34%.
Encouraging news about care and treatment lists CHUK and Butare providing surgery, Butaro Cancer Center of Excellence offering chemotherapy and surgery, Rwanda Military Hospital, Kanombe provides surgery, Radiotherapy and soon chemotherapy and King Faisal Hospital offers chemotherapy and surgery. For Cancer Diagnosis, we have more exciting news: Histopathology is available in tertiary hospitals; advanced Medical Imaging—CT scan are available in 7 Referral Hospitals and MRI in 2 centers; Teaching hospitals have Mammography machines and all District Hospitals have X-Ray and Ultra Sound.
To top it all, the First National Cancer Registry is housed at RBC as the First Phase of Kigali Population Based Registry be extended to other Provinces. Work is also being done in areas of Prevention, Palliative Care and Early Detection. The progress made cannot be ignored, however, a lot remains to be done.
I was struck by lack of awareness and knowledge about breast cancer compounded by the public passive acceptance of the status quo and fed by a culture of waiting for “others” or the government to find the solution. In the USA, people especially those impacted by cancer, take it upon themselves to own the burden and strive to do whatever they can to address a problem and challenge the status quo on an individual base or cooperatively as a group. In USA people fundraise to support important research, vulnerable patients who cannot support their treatment costs, engage in clinical trials and lobby policy that may impact patients, diagnosis or treatment.
Breast cancer impacts not only the patient, but the patient, family, community and the country at large. It is a serious reality that behooves all of us to take action against it in whatever way we can—#Breast Cancer is everybody’s business is BCIEA pitch and hashtag.
It was in this spirit that 2009, Breast Cancer Initiative East Africa (BCIEA) Inc. was registered in Rwanda with a mission to reduce the devastating impact of breast cancer in Rwanda through advocacy, awareness, education, empowerment, support and research.Our message:
Ikunde = Love Yourself
Imenye = Know
Isuzumishe =Get Checked
WHY? Kwisuzumisha Kare Niko Kwirinda Nyabyo
Early Detection is the Best Protection.
Since its inception, BCIEA has directly reached over 20,000 people with life-saving information, 1678 Clinical Breast Exams (39 suspicious cases), supported 392 breast cancer patients/survivors and in collaboration with the University of Rwanda, published Breast Cancer Survey of Annual Ulinzi Walk in Kigali, (Rwanda Journal of Medicine and Sciences Vol 1 No 1 2018). There is dire need for research to develop responsible programs to help people with cancer and their loved ones understand the disease, manage their lives through treatment, recovery and find needed emotional support.
BCIEA has a small Activity and Service Center in Kanombe that is providing space for implementing its mission goals including safe overnight patient transitional stay in between treatment sessions.
Cancer experience in Rwanda is very different from that in USA where I live. In Rwanda, there is still very limited public awareness about cancer and breast cancer is still surrounded by myths, misinformation and stigma which stop individuals from seeking care and receiving available community support. This might explain the prevalence of late stage breast cancer presentations—patients are driven by unbearable pain to seek help, but by then the cancer is untreatable. On the other hand, if a patient is diagnosed with breast cancer, there is no certainty that treatment will be available or accessible or affordable, or there are patient support services that enable the patients to complete treatment and improve their quality of life. In USA patients learn and understand about diagnosis, treatment options and coping strategies and they can access the latest evidence-based cancer information.
In Rwanda signs, symptoms, causes of the diseases are misunderstood even by some members of the medical community. Delayed diagnosis reduces the chance of successful treatment and set the cancer patients and their families on a traumatic journey riddled with uncertainty, fear and stress. There is a great need for culturally appropriate cancer educational materials for patients, families and caregivers to eliminate all barriers. In USA, patient support is key because it is aligned with survival. In Rwanda, high rate of poverty, limited patient support services, low cancer literacy result in poor outcomes.
Good nutrition for cancer patients in USA is emphasized and is lacking in Rwanda. Eating well during cancer treatment can help the patient feel better, keep up the strength, energy and maintain weight to tolerate treatment related side effects and also lower the risk of infection while speeding up the healing process. BCIEA Wellness Garden provides our patients access to nutritious organic foods and serves as a model for them to start one in their homes.
Although there are dramatic differences between Rwanda (low income country) and USA (high income country), “Where there is a will there is a Way” We can attack Breast Cancer from every angle: encourage/promote Prevention, increase patient/public access to Life-Saving information, care, patient support throughout cancer experience: from diagnosis, treatment, survivorship and end of life. With a mindset that believes that whoever you are, you have the power to reduce the impact of the devastating impact of breast cancer wherever you are, yes, I Am and I Will and Together We Are and We Will as we celebrate WORLD CANCER DAY Feb. 4Th 2020 and beyond.
Let’s go to work! Can you Imagine a Rwanda without (Breast) Cancer?
Philippa Kibugu Decuir
Breast Cancer Initiative East Africa (BCIEA) Inc.