We beat cancer against all odds, Survivors’heartbreaking stories

The management of cancer in Nigeria has remained a national scandal.

It is estimated that over 100,000 Nigerians are diagnosed with cancer yearly, while about 80,000 die from the disease due to government’s lackadaisical attitude.

The country’s cancer death ratio of 4 in 5 affected persons is one of the worst in the world. In the face of the grim statistics, Chioma Obinna spoke to some breast cancer survivors. To the survivors, the challenge of getting treatment for cancer is gargantuan.

They also spoke about the financial aspect, the stigma, the exploitation and the total failure of the healthcare system to worsen an already bad situation. survivors-cancer Celine Akin, Grace Udom, Ogechukwu Ogu and many other Nigerian cancer patients are bound by a common destiny under an extraordinary situation.

They survived cancer. In their own words, and unlike many other Nigerians who have lost their lives to cancer out of no choice of theirs, they are hoping for a better management of cancer in Nigeria.

“We do not know why we came down with breast cancer. Even scientists have no acceptable explanation,” one of them said.

 “Thousands of Nigerians come down with the condition every day. Right now, we have no idea how many we are. Our plight is overshadowed, perhaps, because no one understands what we go through. We have suffered much and for long, and now, we wish to let the society know what it is like to be a cancer patient with the hope that this will bring needed attention and succour.”

In the case of Grace Udom, the journey was predictably rough. Married to her husband who had already lost his first wife to kidney disease, breaking the news to him was the greatest hurdle she could face in life.

One strange thing about her case was that there was no lump found in her breast, a rare cancer case that mostly occurs in whites.

Meanwhile, Grace has no foreign blood traced to her lineage. According to experts, she was diagnosed with Paget’s disease of the nipple, a rare form of breast cancer in which cancer cells collect in or around the nipple.

The cancer usually affects the ducts of the nipple first (small milk-carrying tubes) and then spreads to the nipple surface and the areola (the dark circle of skin around the nipple). The nipple and areola often become scaly, red, itchy, and irritated.

Not all breast cancers are the same. As if that was not enough, Grace has a different type of breast cancer known as HER2+ breast cancer. Studies have shown that approximately one in five patients with breast cancer will have HER2+ breast cancer. If you have HER2+ breast cancer, Herceptin is a therapy designed to help fight your kind of cancer.

Unfortunately, Herceptin doubled the cost for her treatment as one Herceptin treatment as of that time cost N480, 000 in Nigeria and she was to take 10 courses amounting to N4.8 million. Experts say HER2+ breast cancer is aggressive because it spreads quickly.

“Precisely, it all started in April 2013. One day I came back from work; while I was undressing, my right nipples peeled off,” Grace recalled.

She was scared. She ran to the clinic, where she was examined by a male doctor who could not find any lump.

“There was no discharge or bleeding from the nipple but I was not comfortable with what had happened. I told him to invite a female physician who also examined the breast and, at the end of the day, nothing was found.”

 Getting home, Grace could neither eat nor sleep. As she was trying to undress again, the nipple peeled off. Then she knew that the worst was about to happen. With the little knowledge of medicine she had, she told herself to brace up for the worst.

 “Three weeks later, the same nipple peeled off again. When I got to the clinic, I told them I needed a referral letter to go and see specialists. Getting to the specialists, after explaining what happened, one of them said, ‘Let us pray it is not what we think’. He said it could be ‘Paget’s disease of the nipple’. I asked the specialist what he meant by that, and he told me it was a type of cancer that affects the nipple of the breast though it is very rare and most common in the whites.

“I became worried especially since I don’t have oyibo gene and I don’t eat oyibo food.” Meanwhile, specimen was taken from the breast for histology. She was also asked to go and do breast ultrasound and mammogram. The results pointed to breast cancer. Her reaction was no different from what is expected from a typical Nigerian. Grace quickly ran to her church for prayers.

“I took all the results home and to my church and laid them at the altar, I said to God, ‘These are reports of men. I believe in your report. I know you as the greatest physician. If you can heal the woman of the issue of blood for 12 years, this is a minor thing for you to do.’”

Done with the religious aspect of the problem, Grace was now faced with the greatest challenge of her life. Breaking the news to her husband became a burden.

“I had problem breaking the news to my husband because he is a very emotional person.” For a man who had lost a wife to kidney problem, breaking such news could shatter the husband’s entire being.

“I married my husband as a widower; he lost his first wife to kidney problem. It took me time to break the news to him. I prayed to the Holy Spirit to minister to my husband before me. Each time he asked about the results, I would lie and say I had collected the results and there was nothing wrong. He kept on asking. One day, after prayers, I told him.” Just as Grace envisaged, he was heartbroken and gripped with fear that what happened to his first wife could happen to me.

“My husband broke down and started crying. I told him that I didn’t need that cry. I added: ‘Breast cancer kills, yes, I know because I am a professional nurse but I know I will not die of breast cancer.’

“When I went back to the hospital to see the specialists, I was told that I was going to have mastectomy (removal of breast), but before then I had read about Paget’s disease of the nipple that breast conservative surgery could be done. In such case, only the nipples and the surrounding tissues can be removed.”

With the information at Grace’s disposal, she refused to give in to the specialists’ recommendation.

“I told the specialists I didn’t want mastectomy. Why not remove the affected areas? There was a little argument. The specialists became angry. I told them I was an adult and should have a say in my care and I could say that I was not doing any surgery; after all, the breast belonged to me. At the end, they accepted the breast conservative surgery and, luckily for me, when the histology report came out, it showed that all the receptor margins were tumour free.”

At this point, Grace commenced treatment. Treatment challenges “Nevertheless, I had to do both chemotherapy and radiotherapy. I did the chemotherapy at the Lagos University Teaching Hospital, LUTH, but their radiotherapy machine was faulty. So I was referred to EKO Hospital. At that time, the Eko Hospital machine was the only functioning machine around”.

One scary experience Grace will not forget was the large crowd at EKO Hospital for the same treatment.

“When we got there, I was scared of the crowd. Some people came all the way from the South-East, some from other western states and the North. Sometimes, we had to sleep over in order to see the doctor early the next day. CANCER SURVIVORS CANCER SURVIVORS

“Sometimes, after your radiotherapy is done, you will hang around so that early the next morning you will be among the first set of patients to be seen. It was not easy for us because the crowd was too much.

“The lack of functional treatment centres contributes to the high deaths of patients. Only few people who were coming for treatment with me at time are alive today.”

To Grace, unless government intervenes, more Nigerians would continue to die of cancer. Cost implication Cancer, unlike many sicknesses, is expensive to treat. According to Grace, the cost implication is overwhelming.

“The cost of radiotherapy then (2014), in LUTH, was N100,000 while at EKO Hospital, it was N150,000,”she said.

“After I completed my radiotherapy and chemotherapy, another issue came up. It was discovered that I needed Herceptin due to my kind of breast cancer”. Unfortunately, at this point, Grace and her husband had spent all their life savings and had even borrowed money on the radiotherapy and chemotherapy. They were faced with the new challenge because, without the Herceptin therapy, the cancer will grow again and start to spread and there was no money. Luckily for Grace, she was introduced to a Non-Governmental Organisation, NGO, that came to her rescue.

“The NGO paid for four courses of Herceptin. At that time, each course cost N480, 000. But I needed 10 courses which amounted to N4.8 million. I had to borrow money from my Cooperative Society other sources which we are still paying till today.

“I thank God for my brothers; I thank God for my family and other people who assisted me with money. You know anything cancer in Nigeria, you are on your own. It is not covered by National Health Insurance Scheme, NHIS. From diagnosis to treatment, you pay for it. I was able to have the complete treatment. Today, I am alive and well.”

Living with cancer Grace believes cancer treatment is not something an individual should go through in a country like Nigeria. It is expensive, there is stigma, there is no comprehensive cancer centre, most of the radiotherapy machines are not functional and the few ones working are epileptic. Grace wished there could be a comprehensive cancer centre where government can subsidise treatment for the poor living with cancer.

“With comprehensive cancer centre, the poor people can have access to treatment at affordable cost. So many people sell their property to treat themselves. So many people are still paying up the money they borrowed for treatment,”she stated. “If government can come in and assist, like they are doing on HIV treatment, if cancer is made free, so many people will live with it comfortably. It is true that it is a killer disease, but if you have financial support, you will be energised to live longer.

But when you borrow money, sell property at the end of the treatment, what happens? Some people will live in penury all their lives because they are repaying the loans they collected during the course of treatment.” Celine Akin’s story is also heartbreaking.

At 48, she is a proud cancer survivor. It all started when she was 46. To the suvivor, mere mention of the word cancer can kill a patient.

 “I want to be frank with you, the six letter word, c-a-n-c-e-r, alone kills. When the doctor breaks the news to you, that name alone can kill you. But when you have God and you are determined to live, there is nothing cancer can do,” she stated.

“Like a mosquito bite, that was exactly the size of the lump I found in my breast. Most people would have overlooked it but I didn’t because I am conscious of my body.

 “Although I do check my breasts all the time, I never thought it was going to be anything serious. My children insisted I must see a doctor and I did. There and then, the journey into the world of cancer started.” The lump was removed at LUTH and taken for laboratory tests. Two weeks later, the laboratory results came out. They revealed the most dreaded disease, cancer.

“I panicked and went home. I asked the doctor the next thing to do and he said, ‘You will remove the breast’. I asked if there were other ways I could do it apart from removing the breast and the professor said unless I wanted to go through chemotherapy.”

At this point, Celine was faced with the thoughts of losing one of her breasts. Sleep disappeared. She thought of the stigma associated with the situation, but her children encouraged her to go ahead instead of losing her life to cancer. With words of encouragement from her family members, she decided to go to church and presented her case to God.

“I thanked God ahead of the surgery. I did the operation, it was wonderful, God saw me through.” According to her, many cancer patients die out of fear.

“Two years on, I am alive and well. All thanks to God and my family. Even if cancer kills, people should learn to check themselves because the earlier the better. Cancer is bad when it has spread all over the body. Learn to obey the doctor in whatever he asks you to do. That is my secret.” Greatest challenge

“I was faced with not only the financial aspect but also the frequent breakdown of equipment. Sometimes, I travelled outside Lagos to get treatment. For people who cannot afford the luxury, they will have no option than to die.

“After surgery, I started chemotherapy. I took eight chemotherapy sessions. After that, I did radiotherapy at EKO Hospital. When you see me today, it is only when I tell you that I am a survivor that you will know. People should know that cancer is not a death sentence when detected and treated early”.

Mrs. Ogochukwu Ogu could not but pour out her frustration to anyone around her after she was diagnosed of breast cancer. Ogo, as she is fondly called, almost died of fear. Diagnosed of breast cancer at 36, she was heartbroken. “I was unhappy. I was crying. I already had three children. How will I die and leave my children? Why me?,”she narrated.

“I became emotional, depressed, confused and afraid. I even considered anti-depressant. But for some reasons, I didn’t take it. I couldn’t discuss it with my closest family members because I felt I would put them in my problems.

“I even made my mother my children’s legal guardian at that time. I went through post-traumatic stress. I didn’t want to be a wife. I didn’t want to be a mother. I didn’t want to be a worker. “The situation continued until I decided to tell my husband who now encouraged me to start the treatment”. Ogochukwu is one of the cancer patients who discovered her situation early.

“I did mastectomy. I never realized people had one breast. I thought of several things. I even imagined if my husband would leave me because I have no breast, but to my greatest surprise, it was even my husband that suggested mastectomy. I thought he would go and marry another woman if I eventually had one breast’. She was faced with choosing between body image and standing up. She chose standing up.

“What I always tell patients is that they should avoid negative people around them. You can avoid people. Stick to your treatment plan. Listen to your body. Don’t pre-empt doctors; listen to them. Engage your mind in activities that take your mind away from the illness. Be spiritual in the context of your religion. Celebrate small victories. At the end, there is a very bright light at the end of the tunnel. This is my story.”

Burden of cancer Against the backdrop of the stories of these survivors, it is not an understatement to say cancer has destructive tendencies on family life and colossal amount of funds required for diagnosis and treatment.

The death of a cancer patient often means the loss of a breadwinner or impoverishment of the survivor due to high cost of treatment. Many patients are exploited – Anozie Chief Executive Officer of a cancer organisation, Care Organisation Public Enlightenment, COPE, Mrs. Ebunola Anozie, said apart from lack of equipment for treatment, most patients are exploited financially.

“Doctors give wrong drugs to patients just to make money from them. No centre is working today because the few you are talking about are epileptic. What we need are comprehensive cancer centres, not hospitals where malaria is treated together with cancer. Most of the equipment are obsolete; even where some of them are still new, they are obsolete. LUTH prefers to repair its linear accelerator than to purchase two generators that could power the machine effectively. Let government try and build one comprehensive cancer centre. Private hospitals are trying but they do not have the latest equipment and the only one trying for now is Lakeshore Cancer Centre,”she stated.

Anozie, who accused government of paying lip service to cancer, explained that the challenges to treatment in Nigeria are numerous. Her words: “One major challenge is financial. People don’t have money, treating cancer is expensive. We don’t have the machines. The ones we have are very epileptic, they break down and the power situation is seriously affecting the machines.

“And doctors have this lackadaisical attitude towards cancer treatment. Some of them are not properly trained. Family members don’t support because of the huge amount of money that is involved. If we have a comprehensive cancer centre, all these challenges will be tackled.”

She further noted that medications for cancers are very expensive. On the way forward, Anozie said only a comprehensive cancer centre will resolve the problems and improve survivor rates in the country. “The most important thing is that the government should take the bull by the horn because a comprehensive cancer centre is what we need. There is also the need for us to have free screening done regularly for people, that is the bottom line. Screening should be done regularly.

People should change their lifestyles. We tend to do more of asoebi than to take care of our health. Cancer should be pulled out of General Hospitals.” High cost and epileptic machines

Also speaking on cancer challenges, a consultant paediatric oncologist and lecturer, College of Medicine, University of Lagos, Prof Edamisan Temiye, said many families have been impoverished due to cancer.

According to Temiye, the cost of treating a cancer patient would treat many patients with minor illnesses. Describing cancer as a painful disease with painful treatment, he said: “It is very expensive to treat as it can make a family’s economy to collapse.”

He went on: “Take for instance, in a child living with cancer, to do a thorough investigation on the child is expensive with magnetic resonance imaging (MRI) fee costing N70,000 or more, this is difficult for the poor. This may be repeated. Some of the drugs are not even available because of the cost.

 “Cost of treatment is a major problem. To treat nephroblastoma in Lagos costs between N186, 000 and N240, 000 for six months, excluding surgery. In Nigeria, poor families pay out of pocket for health care with household contribution about 63 percent of total cost of health care, while donors, private firm, and the various forms of government cater for the 37 percent.

“Another reason we see high death rates in childhood cancer is the fact that most government hospitals do not treat children free of charge.

In Federal Government hospitals, the minimum amount children aged 12 and below pay for admission is about N13, 000 a week. How many families can afford it? The minimum wage is N18, 000. By the time you are removing N13, 000 from N18, 000, that is just for a week. If the child is above 13, the child pays adult fee of almost N75, 000.

“To diagnose is a problem. You need to make quick diagnosis of these cancers. To get better result, you need to properly classify those cancers, doing genetic mapping etc which is not available in the country and, when you try to do them abroad, the cost is enormous. And this is what has improved care of cancers in developed countries.

“In LUTH alone, we see an average of 70 to 80 new cases of various cancers annually.

Success rates are just marginally improving because they are presenting late and when some of them start treatment and they are getting better, they will just disappear because they cannot afford the cost of next chemotherapy.

I remember one child who was doing well. And the mother said the chemo that time cost her N400, 000 and that the next one will cost her about the same amount; she had no money. They never came back.

“Unfortunately, Nigeria has no national statistics for cancer. Efforts have not met the required successes and that makes it difficult for us. We should have a national database from infancy to adulthood for us to see how we are doing.”

Temiye also explained that due to the epileptic power supply in Nigeria, and inability of the hospitals to generate stable power on a 24-hour basis, even if newer machines are procured, they would continue to face frequent breakdowns. The consultant emphasised that electricity is the major reason these machines continue to break down.

“There is no reason a hospital should have one radiotherapy machine in the first place. A serious hospital should at least have two or three machines so that when you relieve one and you maintain it, the other one would be in operation. When it is only one machine that continues to work for a long time, it will break down and the cost of repair is high.

” Way forward Temiye stated that to get cancer treatment right, the first thing the country needs to do is to ensure that each centre has more than one modern machine of different types that can take care of cancer.

“The second thing we need to do is to tackle electricity problems. Nigerians should change the way they buy some of these machines. They should do a lease with the manufacturers. When they have problems, they will bring a new one in and take the old one. I think Nigeria should look at this area.”

The Specialist Radiation & Clinical Oncologist, Lakeshore Cancer Care, Lagos, Dr Abiola Adewale, who also shared his perspective on cancer, said breast and cervical cancers are common among women while prostate cancer is more prevalent in men.

Noting that many people wonder what causes cancer, Adewale explained that there is need to create more awareness of the disease in the country as 30 percent of all cancers can be treated if detected early.

“The disease should no longer be treated as a death sentence or something that has to do with fate. The public should be sensitized on predisposing lifestyle factors like smoking, drinking, obesity, lack of exercise and exposure to carcinogenic products and elements,” he stated.

The specialist added that no fewer than 273,000 cancer deaths occur in a year, adding that ensuring equal access to cancer care is key to progress in cancer management. Lawmakers’ alarm

Just recently, the National Assembly raised the alarm over the dire health challenge posed by cancer to Nigerians, stressing the need to lay a solid legal foundation upon which the present and future superstructure of interventions aimed at the control, treatment and prevention of the disease in the country would take root. While a legislation has been introduced by both the Red and Green Chambers, the Senate has considered and passed its own version of the “Bill for an Act to provide for the establishment of the National Institute for Cancer Research and Treatment.”

The Chairman, Senate Committee on Health, Senator Lanre Tejuoso, while presenting the report on the Bill to the Senate for the third and final reading, explained that cancer has been identified as one of the public health problems worldwide. What it is Cancer is a class of diseases characterized by out-of-control cell growth.

There are over 100 different types of cancer, and each is classified by the type of cell that is initially affected. Cancer harms the body when altered cells divide uncontrollably to form lumps or masses of tissue called tumours (except in the case of leukaemia where cancer prohibits normal blood function by abnormal cell division in the blood stream).

Individual types of cancer There are said to be over 200 different types of cancer. We have the following common cancer types covered in individual knowledge centre articles: Anal cancer, bladder cancer, bone cancer, breast cancer, cervical cancer, colon cancer, colorectal cancer, endometrial cancer, kidney cancer, leukaemia, liver cancer, lymphoma, ovarian cancer, pancreatic cancer, prostate cancer, stomach cancer, testicular cancer, thyroid cancer, vaginal cancer and vulvar cancer.

Fast facts Cancer is considered to be one of the leading causes of morbidity and mortality worldwide. It is believed that cancer risk can be reduced by avoiding tobacco, limiting alcohol intake, limiting UV ray exposure from the sun and tanning beds and maintaining a healthy diet, level of fitness and seeking regular medical care. Screening can locate cervical cancer, colorectal cancer and breast cancer at an early, treatable stage.

Vaccines such as the human papillomavirus (HPV) vaccine assists in preventing some cervical, vaginal, vulvar, and oral cancers. A vaccine for hepatitis B can reduce liver cancer risk.

According to the World Health Organization (WHO), the numbers of new cancer cases is expected to rise by about 70 percent over the next 20 years. The most common sites of cancer among men are lung, prostate, colon, rectum, stomach and liver. The most common sites of cancer among women are breast, colon, rectum, lung, cervix and stomach. Other medical factors

As we age, there is an increase in the number of possible cancer-causing mutations in our DNA. This makes age an important risk factor for cancer. Several viruses have also been linked to cancer such as human papillomavirus (a cause of cervical cancer), hepatitis B and C (causes of liver cancer), and Epstein-Barr virus (a cause of some childhood cancers).

Human immunodeficiency virus (HIV) – and anything else that suppresses or weakens the immune system – inhibits the body’s ability to fight infections and increases the chance of developing cancer.

Read more at: http://www.vanguardngr.com/2016/10/beat-cancer-odds-survivorsheartbreaking-stories/