To start this conversation, let’s hear a survivor’s account, 35-year-old Joyce Waweru, mother of two and diagnosed with breast cancer in July 2014.

“I discovered a tiny lump on my right breast eight years ago. It appeared reddish on the surface and was accompanied by mild pain. I went for a check-up at Kenyatta National Hospital where a simple fine needle aspiration (FNA) was done. This is a biopsy procedure that helps make a diagnosis or rule out conditions such as cancer. The doctor said I had no cancer but advised that I continue with follow-up at the hospital. After about four sessions, I gave up as nothing much was being done and was never given the biopsy result. Besides, the lump had completely disappeared.

I continued with my normal life with no worry in the world until a month later when I felt a sharp pain on my breast but it vanished as quickly as it had come. I didn’t see the need to go to hospital at the time. But the same kind of pain recurred on the other breast a few months later and this got me concerned. Then I noticed a trend – the pains and lump would recur during my period and go away right after the menses.

A falling accident in 2014 triggered the lump once again and this time it grew bigger and bigger. It was time to see a doctor but not before the next alarm bell – a discharge from my breast, which on squeezing produced pus and blood. My boyfriend at the time advised me to see a doctor. This time round I went to Coptic Hospital where more tests were done and cancer was diagnosed. Even before I had time to digest the news, the doctor was already talking of surgery to remove my breast and the cost – a cool Ksh 150,000 – money, of course, I didn’t have. In utter shock, I went into denial.

I went to Coptic Hospital where tests were carried out and the results were to be released two days later. A week later, I called them but they told me they did not have the results. Instinctively, I knew something was amiss and demanded the truth regardless of whether it was good or bad news. They then called me in and I was handed an envelope. I opened it and the first thing I saw was the word carcinoma underlined.

I kept the news to myself. Then I decided to seek a second opinion at the Texas Cancer Centre where I needed to pay Ksh 12,000 to have more tests done. Cash-strapped, I didn’t have a choice but to let my family know so they could help me out. I had just started a new job and my insurance cover had not kicked in. My supervisor was sympathetic and after talking with our director, it was agreed that my insurance policy should be fast-tracked. With insurance in place, I was able to seek another opinion at the Aga Khan University Hospital.

The earlier diagnosis of cancer was confirmed and I was advised to start on chemotherapy to shrink the tumour, which by now had ballooned, before a mastectomy could be carried out. I was in utter confusion and disbelief and to make matters worse, my boyfriend started distancing himself and eventually left. It broke my heart that he could leave when I needed him most.

After completing the chemotherapy sessions, I underwent surgery at the AIC Kijabe Hospital in March this year. Losing my breast felt like my womanhood had been snatched from me. I imagined no man would love me with just one breast. I found it difficult to look at myself in the mirror but through counselling, I am slowly getting to terms with losing my breast and accepting my body. But I still can’t imagine undressing in front of a man.

Looking back at the journey I have walked since my cancer was diagnosed, I feel the health practitioners perhaps need to be a little bit more sensitive to cancer victims and prepare them adequately to face reality. While to doctors and nurses cancer may be an occurrence they see daily, it shatters the victim’s world.

I tried to shield my children from knowing about my disease but they got to know about it from relatives. I recall coming home from hospital and my daughter asking me if I was going to die because they had been told in school that cancer kills. I reassured her that I was getting good treatment and would be okay.

I didn’t have money to undergo chemotherapy after surgery but was lucky to find Faraja Cancer Centre where I have been receiving counselling, nutritional advice and support. I am also lucky that Nakumatt Holdings have sponsored my chemotherapy sessions, which I am currently undergoing. I thank God for my children and especially my eldest daughter who takes care of me. Chemotherapy is tough and sometimes I am bedridden for several days after a session. Though not yet cancer free, I have faith that God will heal me.”

Your breast cancer questions answered…

Dr Joseph Githaiga, a consultant surgeon at The Nairobi Hospital with special interest in breast cancer management and who is also a senior lecturer at the University of Nairobi in the department of surgery, sheds some light on breast cancer by answering some commonly asked questions:

Are there different types of breast cancer?

There are many types of breast cancer but the two common ones in Kenya are ductal carcinoma, where the abnormal cells are found inside the milk duct in the breast, and lobular carcinoma, where the abnormal cells are found in the milk-producing glands (lobules) of the breast. Ductal carcinoma is the most common affecting around 85 per cent of women in Kenya, whereas lobular carcinoma affects only 15 per cent.

Who is at risk of breast cancer?

One is at risk of breast cancer by virtue of being a woman, although there are cases of men getting breast cancer but these are rare. Breast cancer also tends to affect older women. In Kenya, for instance, the peak age is about 44 years while in developed countries it is at 60 years.

One’s family history is also key in determining who is at risk as this accounts for about 10 per cent of all breast cancers diagnosed. The common genes are called BRCA1 and BRCA2, which are passed down from mother to daughter. If one is a genetic carrier, then you have a 50 per cent chance of developing breast cancer in your lifetime. If your first degree relative, say a mother or sister, has breast cancer and you are also a genetic carrier, then your risk of getting breast cancer is 80 per cent. But it is not all doom and gloom as something can be done about it. You can have a mastectomy to remove both your breasts like actress Angeline Jolie.

Lifestyle factors also contribute a lot to breast cancer and that may be the reason why we have experienced an upsurge of the number of women being diagnosed with the disease. Excessive drinking of alcohol, smoking and obesity increase the risk.

Another risk factor is exposure to oestrogen for a long time. The body produces oestrogen naturally and if you had your menstrual periods at an early age and a late menopause, then it means you have been exposed to oestrogen for a longer duration hence the increased risk of breast cancer. In addition, women who don’t have children are at risk too because the more children you have, then the more interruption in the oestrogen production and thus reduction in exposure.

The age at which you give birth also matters, the younger you are the more protected you are from breast cancer. A breast-feeding woman produces less oestrogen hence the link between breast-feeding and breast cancer. Hormone replacement therapy has been cited as one of the leading risk factors and it is, therefore, not for everyone. Exposure to radiation also increases your risk.

What are the warning signs?

The most common would be, of course, a lump in one’s breast. Other signs include nipple discharge especially blood in the discharge, change of skin colour around the breast and swellings in the armpits. The last is pain in your breast although this is a late feature.

What is the procedure for diagnosing breast cancer?

When making an assessment for breast cancer, a doctor will do a triple assessment test. First, you get the history from the patient and then you do a physical examination. Then you send the patient for imaging. The type of imaging one goes for depends on their age – for women above the age of 35, a mammogram is recommended whereas for women below 35, an ultra sound is what you go for. From there, the doctor can pick out the features that suggest if he is dealing with cancer. If cancer is suspected, he then calls for biopsy, a sample of tissue taken from the body in order to examine it more closely.

Then?

If you are confirmed to have cancer, the next step is known as staging, which is done to establish the extent of the disease. This step seeks to find out if the cancer is confined to the breast or armpits, or if it has spread to other organs. If the disease is confined to the breast or armpit, then it is curable but if it has spread to other organs it becomes difficult to deal with it. When there is no cure, the doctors proceed with what is known as palliation – controlling the disease and ensuring the patient has a good quality of life.

Staging involves chest X-rays to find out whether the disease has spread to the lungs. An abdominal ultrasound can also be done to see whether there is anything in the liver and other organs. A bone scan may also be necessary to establish whether there is any disease in the bones.

If one has the means, then they can go for CT scans of the chest or the abdomen. These are expensive but are more accurate as they can pick out even minute details. Again, this will also depend on the size of the tumour. If the tumour is less than five centimetres, then it is unlikely that it has spread and the chest X-ray and abdominal ultrasound would suffice. But if the tumour is more than five centimetres, then the ideal situation would be to go for a CT scan or a PET scan which is even more accurate as it gives a detailed three-dimensional image of the inside of the body.

Sadly, there is no single PET scan machine in Kenya and the nearest is in South Africa or Egypt. Egypt actually offers the best rates for a PET scan although many people don’t know about it and thus opt for India.

What’s next after cancer is diagnosed?

A pathologist first examines the breast tissues after a biopsy and gives a report indicating the characteristics of the cancer. This informs the doctor on what treatment to give the patient. One of the things a doctor does is to carry out a receptor testing for oestrogen and progesterone. On the cancer cells, there are places where the oestrogen and progesterone attach, making the cancer cells survive better and live longer. Receptor testing for oestrogen and progesterone thus seeks to identify these cells.

Once you have identified these cells, anti-oestrogen is used to treat the patient using selective oestrogen receptor modulators, ultimately blocking the effects of oestrogen on the breast tissue. The advantage here is that one can get additional hormonal treatment besides chemotherapy and surgery. The tumours that are oestrogen receptor positive tend to have a better outcome in terms of treatment.

There is a third receptor test called HER2. These are chemicals produced by the cancer cells, which make them grow faster and spread faster. You can identify which tumours have HER2 and if they are positive, then there is a very specific treatment for it such as monoclonal antibody treatment. The treatment targets those cells that have a HER2 receptor. The drug is available but is very expensive. One dose goes for Ksh 250,000 and the manufacturer recommends a minimum of six courses.

How do you determine the stages of breast cancer?

A doctor looks at the status of the armpits. If the lymph nodes are positive, meaning they have cancer cells in them, then you give chemotherapy. If the cells are well differentiated, that is, not very abnormal compared to normal cells, then that is a grade 1 tumour and if they are moderately abnormal, then it is a grade 2. When you have severely abnormal cells that do not even resemble breast cells, then that is a very aggressive tumour hence it is a grade 3. Grade 3 tumour calls for immediate chemotherapy.

Another condition that will determine whether a patient goes for chemotherapy or not is when they have aggressive tumours that are oestrogen receptor negative, progesterone receptor negative and HER2 receptor negative. These are what are called triple negative tumours. They cannot be treated hormonally but only with chemotherapy.

The other option for treatment is radiotherapy especially when you do breast conservation and there is involvement of the lymphatic, or if the tumour is very large, usually more than five centimetres. Some patients go through the entire range of treatment including surgery, chemotherapy, mono treatment and radiotherapy.

What is the difference between mastectomy and lumpectomy?

For a long time, the standard treatment for breast cancer was to remove the whole breast, known as mastectomy, then go to the armpits and remove the lymph nodes because if the lymph nodes have the disease, then you have to give chemotherapy. Lumpectomy on the other hand is when you remove the disease with a margin of normal tissues and currently is almost the gold standard of treatment and part of what is called breast conservation surgery. With lumpectomy, you preserve the breast for cosmetic purposes. And with the development of oncoplastic surgery, the breast can be reconstructed to appear normal.

The only problem with breast conservation is that you have to give radiotherapy because if you don’t, there is a 30 per cent chance that the disease will recur in 10 years. Needless to say, radiotherapy is very expensive and there are very few radiotherapy machines in Kenya. As a result, many women who may not afford radiotherapy opt for mastectomy, and that is the situation in Kenya right now.

What are the risks associated with breast cancer treatment?

The effects of chemotherapy can be very sickening and they range from diarrhoea, nausea, hair loss, infections, decrease in blood count, memory loss and mood changes. The good news is that these are reversible changes and once the chemotherapy stops, they also end. It also varies from person to person.

What are the chances of the cancer recurring after treatment?

When doctors talk about cure in cancer, it does not mean the same as curing a disease such as malaria. With cancer, the exact cause is unknown and so what is treated is the disease but the cause is not eliminated hence the possibility of a recurrence. A doctor will look at it in terms of 10-year and 20-year survival span. For stage one disease, you have a 90 per cent chance of a 10-year survival, whereas for stage two the chances of a 10-year survival are 80 per cent. For stage three, there is a 50 to 60 per cent chance of a 10-year survival and for stage four less than 40 per cent chance of a 10-year survival. Stage four disease is when the cancer has spread to other organs of the body. These statistics are for cancers in general.

If detected early, breast cancer survival rates are very good – going even to 20-year with the right treatment.

Are breast cancer campaigns bearing fruits?

Admittedly, people are more aware now and very conscious about breast cancer. As a matter of fact, there is a surge in the number of women who come for examination especially in the month of October. Dr Githaiga’s only wish is that these campaigns could go on all-year round not just in October. While the campaigns have paid off, the country has not invested in facilities to treat the cases that are diagnosed each year. The cost of treatment is also an issue, meaning many women are dying unnecessarily as they cannot afford to pay.