Breast cancer survivours narrate experiences, challenges

•After the fifth chemotherapy, I experienced pains on my legs, found it hard to eat, talk, says Bamishayo
•COPE provides financial assistance, says early detection could save lives, finds more cases in younger people
•WHO inaugurates new campaign to amplify lived experience of people affected by cancer worldwide

Several reports have shown that with timely and optimal treatment, more Nigerian women will survive breast cancer. However, due to financial constraints and poor access to life-saving procedures, some women still die of the treatable disease.

Some breast cancer survivors, who spoke to journalists, recently, during an event organised, by Care Organisation Public Enlightenment (COPE) to commemorate National Breast Cancer Awareness Month, narrated their ordeal.

The event was also to celebrate members of COPE support group, who are breast cancer survivors, and to provide opportunity to share their experiences and challenges.

The theme of get-together was “2022 Together We C.A.N.” The programme, which took place the on October 20, 2022 at Ebony Cinema was supported by Development Initiatives Network and Variant Advisory.

Also, COPE, at the event, gave N1 million as financial assistance to some of its member survivors, who are still undergoing treatment.

One of the survivors, who received financial aid at the event, Mrs. Taiwo Bamishayo, spoke about how she found out the disease and her struggles during chemotherapy.

She said: “Everything started in the year 2020 when I noticed I had lump in one of my breasts. So, I went to consult the doctor who told me that I needed to remove the lump. After the lump was removed followed by more investigation, they discovered that the lump was cancerous and told me that I needed to remove the breast. I got the breast removed and had six chemotherapies after that. And this year, again, I noticed another lump and went back to the hospital. After running tests, both in private and public hospitals, I was told that the second lump is also cancerous and needed removal too. Since then, I have had like five chemotherapies, remaining just one for me to finish.

“After the fifth chemotherapy, I experienced pains on my legs and found it hard to eat too, but it is better now compared to the fourth one, which was worse because I found it hard to walk then.”

The 59 year-old Bamishayo also shared how she struggles to pay for the hospital bills and how hard it is for poor people to survive breast cancer. “Even till now, I still owe the hospital N99,000 and my children who help out, find it hard due to the state of the country. My first child, who is a graduate, does not have a job yet. The second one has a job, but the salary is nothing to write home about. So, to buy drugs has not been easy for me but thank God for COPE because they have been helping me in every way possible. Today, I received the sum of N250,000 from them, and they have been wonderful and supportive. So, now I can settle my pending bill at the hospital, and also pay for my sixth chemo.

“From my experiences, anyone who does not have money may find it very hard to survive breast cancer,” she said.
ALSO, another member of the organisation, Dami, who is in her 9th year of surviving breast cancer, said: “I’m very excited to be here at this yearly event, because COPE and her supporters have shown us that with COPE we can really cope with breast cancer. It is not an easy journey but through COPE and everyone that is making COPE to be what it is, you people have been there for us and I am very grateful and happy. Today, coming to see my sisters all looking radiant is a big encouragement.”

Chief Executive Officer (CEO) of COPE, Mrs. Ebunola Anozie, told The Guardian the importance of the programme and how their sisterhood occurs. She said: “Today’s programme is to celebrate breast cancer survivors as this month is breast cancer awareness month. We know there is life after breast cancer, so, if I have done mastectomy, you cannot tell. Life is important and we decided to bring them out to watch a movie here at Ebony life. We are having a lot of fun eating together. So, this allows us to have fun and mingle because we need support from one another, that is the key thing. We need to join hands together to lift each other up. They all have partners, so when something is wrong with one’s partner, I get to know because I will be informed. So, it is more like a sisterhood and that is what I like about it.”

Anozie also spoke about the financial aid and how their sponsors have been very supportive. “We spent N1 million for four people, some started their treatment and could not finish it, so we had to come in and help. We need to help and that is why we are COPE. We thank our sponsors because we do not have the money, we are not a profit-making organization, but we have sponsors like Variant Advisor. They have been supporting us for years. The free breast ultra-sound screening, we offer are made possible by them, and also taking care of support group members are also made possible by them. This programme we had was made possible by one of the trustees, Dr. Bola Fajemilokun, and the gift items shared was also sponsored by her sister,” she said.

Anozie also highlighted the importance of screening and early detection, which could ultimately save lives. “We cannot say that it is the end of the world because someone has breast cancer, it is not because there is life after breast cancer. Some people you have seen here have their two breasts because they noticed early and did the necessary things early and they still have their breasts, but they are breast cancer survivors too. One must not have mastectomy done if you notice early. That is why we preach early detection, and we make it possible for women to come for free ultra-sound scan every third Saturday of the month from 10am to 2pm. We still find some people that will screen, who have full-blown cancer, and they are young too. So, why don’t you come when it is early? Just check, so that when you detect it early, you can save your life and the breast,” she said.

A mastectomy is surgery to remove all breasts tissue from a breast as a way to treat or prevent breast cancer. She finally advised everyone to join hands and encourage women around them to come out for screening. She said: “My advice is to women and men because men also have breast cancer, although one in a hundred. So, we are appealing to men to encourage their partners, wives, sisters and mothers to come and have their breasts screened, and we are not asking you to pay a dime for it.

“The essence of COPE is to reduce the mortality rate due to breast cancer in the country. We are resource provider, so we ‘SCREEN’ as in screen, counsel, refer, educate, enlighten and nurture.”

A nurse at COPE, Florence Anyanwu, talked about her experiences taking care of these survivors and how informed it has made her. She said: “The experiences was like an eye opener because back then when we were in school, they brushed aside the breast cancer issue. But seeing them one on one, I was amazed that someone can be alive after such experience. It is not easy for them to come out, but when you attend to them they are happy. We too, we are happy because that is the essence of the support group.”

Anyanwu also said that the cases are increasing and there are more cases in younger people. She said: “Yes, cases are actually on the increase but the difference is that people are finding it out on time. Therefore, survivors are now on the increase. People are now coming and making themselves available for treatments.

“There are more cases in younger people even from our last screening. A little girl of about 16 years has this very suspicious lump, even though we cannot say it is full blown, but it is so suspicious.”

She advised everyone, especially young persons who feel they are young and therefore cannot develop the disease, to go for appropriate investigations as soon as they notice something in their breasts.

She said: “My advice is to go for investigation whenever you find something in your breasts. Follow it up immediately, whatever the case may be, because for the fact that you have breast cancer does not mean it is the end of the world.”

Meanwhile, the World Health Organisation (WHO) has inaugurated the first global survey to better understand and address the needs of all those affected by cancer. The survey is part of a broader campaign, designed with and intended to amplify the voices of those affected by cancer – survivors, caregivers and the bereaved – as part of WHO’s Framework for Meaningful Engagement of People Living with Non communicable diseases (PLWNCDs). This Framework is a commitment to respectfully and meaningfully engage PLWNCDs in co-designing policies, programmes, and solutions. The survey results will feed into the design of policies and programmes to offer better well-being in the context of a cancer diagnosis and co-create solutions for the future.

The WHO, in a statement, said nearly every family globally is affected by cancer, either directly – one in five people are diagnosed with cancer during their lifetime – or as caregivers or family-members. A cancer diagnosis triggers a broad and profound effect on the health and well-being of all those involved.

Director-General of the WHO, Dr. Tedros Adhanom Ghebreyesus, said: “For too long, the focus in cancer control has been on clinical care and not on the broader needs of people affected by cancer. Global cancer policies must be shaped by more than data and scientific research, to include the voices and insight of people impacted by the disease.”

Recent studies have shown that nearly half of people diagnosed with cancer experience anxiety and loss of faith and may be abandoned by their intimate partners. In low- and middle-income countries, financial hardship and loss of assets can be experienced by 70 per cent or more of those affected. “When my daughter was diagnosed with cancer, our lives changed drastically and in ways that we did not expect. The effects of cancer last a lifetime,” said Ruth Hoffman, President of the American Childhood Cancer Organisation.

Understanding and amplifying the lived experiences of people affected by cancer can create more effective and supportive systems. Yet, the needs and preferences of people with cancer and their caregivers remain unknown to many providers and policy-makers. “We are making a long-term commitment to place people affected by cancer properly at the center of the agenda, to co-create better solutions” explained Dr. Bente Mikkelsen, Director of the Department of Non communicable Diseases at WHO. “This campaign will include four phases: releasing the global survey, hosting national consultations, presenting best practices and implementing community-led initiatives. We are ready to open a new chapter and improve the well-being of people affected by cancer.”

The ambition of the global survey is to reach more than 100,000 responders from 100 countries, a majority of whom live in low- and middle-income countries. The survey results are expected in early 2023 and, thereafter, used to shape policies, programmes and services for people affected by cancer globally.