Breast cancer: Having a mastectomy doesn’t make you less a woman

 Photo: Courtesy

On a typical September morning in 2015, she felt a lump on her left breast when showering. In spite of it being rather painful, she didn't think much of it. It was probably nothing that a brief visit to the gynaecologist couldn't fix. Jenipher Adhiambo Ludindi, 35, shifts in her chair and clasps her hands in her lap as she recalls what was to be a turning point in her life. She is a stately, soft-spoken woman with a beguiling smile.

"I went to my gynaecologist but unfortunately, he was held up in traffic. I noticed that the office next to his was labelled 'breast surgeon'. I decided to consult the breast surgeon instead. Never in my wildest dreams did I consider that it could be cancer!" Jenipher was 33, married to a wonderful man, had a four-year-old son, and was doing well in her career and business endeavours. She was happy with her life. When the surgeon mentioned the possibility of breast cancer, Jenipher was mortified. "I'd always thought of cancer as a first world problem. I was young and otherwise healthy and didn't even have history of cancer in my family. After some tests, it was confirmed that yes, I had stage 2 breast cancer," Jenipher remembers.

Both the initial and second opinion tests were positive for cancer. Jenipher had become one of the thousands of Kenyan women diagnosed with cancer. Statistics from the Kenya Network of Cancer Organizations show that breast cancer is the leading cancer in Kenya - affecting 34 out of 100, 000 women followed by cervical cancer which affects 25 in 100, 000 women. A report published in May 2015 confirms this. The report, titled The Global Burden of Cancer 2013, showed that between 1990 and 2013, breast cancer cases among women in the country increased from 1,881 to 4, 499. Globally, breast cancer incidence is also on the rise. In 2013, there were 1.4 million reported new cases of breast cancer and 464,000 deaths.

Dr. Vijayakumar Narayanan, an oncologist at Mp Shah Hospital's Cancer Care Unit, recommended for Jenipher to undergo either a single radical mastectomy or a lumpectomy. "Radical mastectomy means surgical removal of the entire breast and affected lymph nodes, while lumpectomy is a breast-conserving surgery which removes only the tumour," Dr Vijaykumar says.

Although there are no mastectomy statistics specific for Kenya, if the global statistics are anything to go by, they are an increasingly popular course of treatment for many women even when their breast cancers are suitable for treatment with lumpectomy. "Oncologists generally encourage patients to go for lumpectomies if the cancer is in the early stages and hasn't spread into the lymph nodes. But most women have the misconception that lumpectomies are not as effective as mastectomies, hence the rise in mastectomies. Also, some women opt for mastectomies because they might not require chemotherapy and radiotherapy afterwards," says Dr Vijayakumar.

 

Lumpectomy or mastectomy?

Like many women with a breast cancer diagnosis, despite having the choice of a lumpectomy, Jenipher was worried about cancer recurrence. "I wasn't even worried about losing a breast. At this point, I just wanted to save my life. After consulting with my husband and praying over it, we told the doctor to do what he thought would be best for my health. He decided for the mastectomy to reduce the risk of recurrence," Jenipher says.

Within the same month she was diagnosed, Jenipher underwent a single mastectomy surgery to remove her left breast. "I just couldn't wait to get it done. If I had waited longer, it would have increased the risk of the cancer spreading to other parts of my body or advancing to a different stage. I was lucky that my in-laws supported me financially- they took care of all the medical bills. My husband and I only had to worry about my special diet and other extra costs." she says.

Catch 22

Unlike Jenipher, Lucy Wanjiru Ng'ang'a wasn't lucky to have a good financial background to help with treatment costs. Lucy, who worked as a househelp before she got ill, comes from a poor, rural household in Ruiru. A mastectomy in Kenya can cost as much as Sh 500,000 in a private hospital while in a mission or public hospital, it can cost less than Sh 100,000. Although seemingly affordable to the average Kenyan, Lucy's family struggled with the cost of cancer treatment.

Her plight is quintessential of many women fighting cancer in rural Kenya. Rural Kenyans generally have lower incomes, are less informed, and have difficulty in accessing oncology facilities in Nairobi –which makes the fight against breast cancer harder for them. A 2010 report by Muthoni and Miller revealed a huge divide between urban middle-income women and other test groups (low and middle-income rural, low income urban) with respect to knowledge of breast cancer and early detection measures. The report further showed that the less-informed groups were more likely to view a cancer diagnosis as an inevitable death sentence.

Lucy is 24 although her stature makes her look much younger, and for this interview she sits close to her mother. She just finished her last round of radiotherapy and although weak, she feels better than she has in a long time. She doesn't want to be photographed for the article, although her mother tries to convince her otherwise.

"I first noticed that a lump was growing on my left breast in February 2015 when I was 22. But I knew we had no money for treatment. I kept it secret and hoped that it would just go away on its own. However, it kept on growing. Unfortunately my father passed away in April 2015, and I felt that the timing wasn't right to tell my mother about the lump on my breast. We didn't have any money at all and were still in mourning," Lucy says.

Lucy later confided in a family friend, who in turn informed her mother. "She called me and examined the lump. She was upset that I had kept it a secret, although she understood why I had done it," Lucy adds. Her mother, Mary Ng'ang'a, advised her to go to their local clinic in Ruiru for a check-up. However, due to lack of the right machines, she was advised to go to a bigger hospital. She went to Gatundu district hospital, where in turn she was directed to go to private hospital for tests.

"We didn't have money for test so I went back home and waited till March 2016 when my mother took me to St. Mary's Mission Hospital. I had surgery to remove the lump, which they tested for cancer. The tests were positive. This made me very sad. I wondered why all this was happening to me. I couldn't help wondering how we were going to be able to raise the money needed for the mastectomy," Lucy says.

Because the tumour had started growing again, a mastectomy was recommended. Through fundraising and help from well-wishers, Lucy's mother managed to raise the money needed. Lucy had a mastectomy in April 2016.

Double Mastectomy

Like both Lucy and Jenipher, Florence Achieng Ojode also had a mastectomy. However hers was a case of double mastectomy and she was diagnosed with cancer at and advanced age. She is 70, although she looks younger than her years and is still full of life. "My younger sister died of breast cancer at the age of 54 in June 2007 and in July the same year I got a breast cancer diagnosis. I had been one of her caretakers when she was sick and I had become more knowledgeable about cancer. One morning I felt a lump on my left breast while doing a self breast examination. I waited for a week to see if it would go away on its own. It didn't. I was very scared because my sister had just died from breast cancer. I knew the probability was high that I too had breast cancer," says Florence.

Tests confirmed that indeed, Florence had breast cancer. Mastectomy, to be followed by six sessions of chemotherapy and 25 sessions of radiotherapy was recommended. "The chemotherapy and radiotherapy are even more brutal than the mastectomy. Chemotherapy makes you feel very sick and weak- I had chemo after every three weeks. After that, had 25 sessions of radiotherapy from Monday to Friday, taking breaks only on weekends," says Florence.

Florence was placed on hormonal treatments and she was ok for a while. Dr Vijayakumar says that four out of five breast cancer cases are hormone sensitive, requiring hormone therapy to prevent recurrence.

In 2010 Florence noticed that the tip of her left breast was inverting. "I knew that this was one of the symptoms of cancer. Initial mammogram and breast scan weren't conclusive but a biopsy revealed that I had cancer on my remaining breast. I had to have another mastectomy but because the cancer had been caught early, I didn't have to go through chemotherapy again. I had five sessions of radiotherapy and was put on hormonal treatments again," she says.

But the battle with cancer was far from over for Florence. In 2012, she started feeling ill again. She was constantly nauseated and had lost her appetite. Although at first the doctors thought it might be acidity, medication didn't seem to help. A body scan revealed that she had an 8cm long tumour in her pelvis. She later went to Israel for a more advanced scan, which showed that she had ovarian cancer.

"This was the third time I was fighting cancer. I had the ovary removed. The ovarian cancer had been caught in the early stages and I had only two radiotherapy sessions and no chemotherapy. Now I'm cancer-free and trying to enjoy my old age to the fullest. "

Getting support

The three women interviewed credit Faraja Cancer Support, for providing them with much-needed emotional, practical support in their journey to healing. "When I couldn't get radiotherapy at Kenyatta National Hospital due to the doctors' strike, I wondered what would happen to me. But my mother heard about Faraja Cancer Support and they helped us," Lucy says.

"Through Faraja, I've learned how to take care of my health. They bring professionals to talk to us about things like nutrition and also to motivate us to continue living positively. They also organise exercise classes tailored to our specific needs. We get to meet other cancer patients and survivors and learn from each other," says Jenipher.

Florence is also grateful for the support she gets from Faraja Cancer Support. "They have taught me a lot about being healthy and I especially enjoy meeting with other cancer survivors. We encourage and learn from each other. I have a very positive outlook on life. Unless I'm too sick to get out of bed, I always dress up and go through my life as usual," she says.

Still a woman

Breasts are a big part of a woman's self. Women who've had mastectomies might feel less attractive. However, this is not the case for Jenipher. "I'm still a woman. I wear a prosthetic for my missing breast and no one can tell the difference. I had the breast removed to save my life and I don't regret that decision. My husband was also happy with me the way I was, but unfortunately he passed away in 2016. I'm not planning on remarrying or having any more children. "

As for Lucy, she's still coming to terms with the loss of her breast. For now she's just happy to not be in pain and that she's completed the treatment. "It wasn't easy, especially with the doctor's strike. I was supposed to go to Kenyatta National Hospital for radiotherapy but the doctors' strike started on the week I was to begin the sessions. My mother later heard about Mp Shah's Cancer Care Unit and she was able to arrange for my treatment through well-wishers."

Although she was 60 years old when she had her first mastectomy, Florence admits that she still took the loss of her breasts hard. "A breast is an important part of a female body and when you lose it, you can feel like you're no longer as attractive or feminine. But being an older woman, I was at an advantage. My children were adults already and I had even retired from working before I was diagnosed."

Reconstruction

Some women opt for breast reconstructive surgery, which restores the breast mound from the stomach muscles or silicone implants. However, Dr Vijayakumar says that most hospitals in Kenya don't have the expertise required for reconstructive surgeries. "At the moment no one in Kenya does the breast reconstructive surgery. In my own practice, I'm yet to encounter a woman who has had a breast reconstruction." he says.

Jenipher wouldn't consider getting reconstructive surgery. "The reconstructive surgery would require removal of flesh from other body parts to create a new breast mound, and I don't like that idea. Sometimes I miss my breast, especially when I look at my wedding day pictures. I also miss wearing dresses and tops with plunging necklines to show off my cleavage. But overall, I'm quite happy with myself," she says.

As for Lucy, she hasn't heard about the possibility of reconstruction and she doesn't know about breast prosthetics either. She is excited about the idea of getting prosthetics to balance out her chest. Florence laughs at this question. "I'm an old woman. There's no need for me to go through all that. I wear prosthetics and they serve me well. Do I look like someone who doesn't have breasts? No, I don't!" she says.

Dr Vijay advices all women to do self breast examination at least once a month. "Treatment is more effective when the cancer in the early stages. There's a lot of stigma attached to cancer diagnosis. However, a cancer shouldn't spell doom- it is a curable disease. And even if you have a mastectomy, you can still live life fully." he says.

Cancer in Kenya

From the Global Burden of Cancer 2013

1. It’s the third highest cause of morbidity with 7 per cent deaths per year, after infectious and cardiovascular diseases.

2. There are 39,000 new cases of cancer each year in Kenya and 27,000 deaths.

3.60 per cent of Kenyans affected by cancer are younger than 70 years old.

4. 70-80 per cent of cancer cases in Kenya are diagnoses in late stages due to lack of awareness, treatment facilities, high cost of treatment, and poverty.

5. There are only 4 radiation centres in the country (KNH, MP Shah, Nairobi Hospital, Aga Khan)

6. The human capacity for cancer treatment in the Kenyan public is very low.

7. 4 radiation oncologists

8. 6 medical oncologists

9. 4 paediatric oncologists

10. 5 radiation therapy technologists

11. 3 oncology nurses

12. 2 medical physicists