Archives for August 2013

Mammography in Kenya’s Biggest Hospital is a Nightmare

Back in 2010, my mother started having bad breast pain at age 55. She had just retired as a nurse from Kenyatta national hospital (KNH), the biggest hospital in Kenya and East Africa. My mother worked with KNH for many years and she had built herself up the corporate ladder slowly by slowly up to when she retired with a decent retirement package. Little did she know that she would have to go back to KNH to seek help to save her life from killer breast cancer. Doomed she was.

The nightmare started when she was referred to mammography department to confirm her diagnosis. If I could go back how all this unfolded, initially my mom thought she had a boil on her breast ans treated it as if it was one. Her breast was swollen, red and tender and had a hole that was oozing foul-smelling pus. As a nurse, she knew exactly how to treat a boil from home without going to the doctor. She thought she got this.

Months and months went by with her boil getting more and more swollen, red and from a small hole to a bigger wound. It is expected to develop swollen lymph nodes closes to the infected wound and so, having swollen lymph nodes on the same side as “the boil” wasn’t alarming to my mom. It all seemed to follow the normal expectations of an infected boil. Antibiotics both topical and systemic didn’t make any improvements until I called my mom from Boston, USA and asked her seek a physician advice.

As soon as she got to the doctor, breast cancer image was screaming and shinning to the doctor’s ears and eyes. It was at this point she was referred to KNH to get a mammogram. My mom thought she knew her way around in KNH but to her surprise, the only mammogram machine was out-of-order and she was told it shouldn’t take long before they could have it repaired.

Six or so months later, the mammogram machine was restored and the waiting list was as long as they get. Call it corruption or whatever you want to call it, my mom through knowing whomever she knew could not be screened any earlier than a month ahead from the day the mammogram machine was restored. That was a big lie. The machine had up and down time almost every other day. The corruption was open.  The ones who could use the back door and give the technicians/radiologist chai/kitu kidogo (corrupt money) were given priority.

At times, playing by the rules is a recipe to death! We had to use the corrupt way and my mom got a mammography the same day. Think about this for a second, besides paying for mammography, we had to corrupt somebody to do it. Otherwise, a year or two would have passed waiting for the mammography which was obviously confirming the truth.  After the doomed mammogram, my mom had breast tumor — DUH! Her affected breast was more than twice the size of the unaffected one. Long story short, we ended up spending more than KSH 15,000 for the mammogram due to travel, corruption and the cost of doing the mammogram.

Full body CT scan was done together with biopsies and the truth unfolded that she had a stage 4 breast cancer with metastasis to the lungs.  Her breathing was compromised anyway as a long time asthma sufferer.

Surgery was done successfully but radiation therapy was way too expensive to afford. We tried chemo therapy, fund-raisers left and right. We afforded a few radiation therapies up to a point when she had to be put in critical care unit. The critical care unit in KNH private wing is a money milking cow. ‘

My Mom succumbed to breast cancer 11 months after the damn mammogram was completed. My mom died in pain, weak, wasted and with smelling breast cancer wounds that had perforated the skin to look like cauliflowers with bloody pus.

Kenyatta national hospital ought to change the corruption culture that one has to pay something behind closed doors to get anything done. From what I later got to know, down times on this precious mammogram in heart of Kenya’s capital, in the biggest hospital in East Africa is due to intentional sabotage. Wait times are not only caused by low number of mammogram machines in Kenya but also due to human sabotage to create artificial demand.

I strongly believe, just like the corrupt police system in Kenya, KNH higher officials are part of this corruption scheme. No one gives a damn. There is no way to explain how a mammogram machine can be “out of service” for 6 plus months without higher management intervention, while few individuals are using the machine privately on tax payers money.

I know my mom died of breast cancer gone too far before intervention but the situation in KNH is killing thousands more. What about those who can barely afford a mammogram? How are they going to afford the damn corruption money? Who has answers to my painful questions? Does anyone give a damn anymore or is it a matter of self-enrichment?

Breast Cancer Took My Mom in Kenya: How She Died

If there is true suffering, pain and depression I know in this world, its breast cancer. I hope my story will inspire every reader to STOP hoping and start doing something about breast cancer. This is a tough one to live with and life will never be the same without my beloved mom, the only parent I ever knew. The only child she ever had.

Back in 2008, my mother visited us in USA and we had a great time. We visited any attraction you could think of. From the great Canyon, Himalayas to Miami Beach, you name it. From NASA center in Houston Texas to Niagara falls to Canadian attic. Life was good and we enjoyed each other company, little did I know this was the only time I’ll ever spend with my Mom.

Early the following year, my Mom started complaining of feeling itchy all the time on her breast. As a nurse in USA, I advised her to use anti-histamine. Women in Africa are known to persevere a lot and so my mom stopped telling me much about it. But the itching progressed slowly over the year of 2009 and 2010.

A year or more later, my mom wasn’t feeling well and I sent money for her to go to Nairobi Hospital for check-up. Being the only parent I ever knew, I had to give the best I could to my beloved mom. In Nairobi hospital, my mom was found to have elevated white blood cell count but all cultures tested turned no positive results for any infection. Needless to say, she was not even admitted, it was an out-patient visit.

Out of the blue moon, I remembered to ask her if she still feel the itchy feeling she had on her left breast. She told me it’s been there and “due to scratching it too much, it hardened and darkened”. “Sometimes it makes me wake up at night and I feel sweaty and hot”. Breast cancer was not one of the things I could have thought about at the moment.

I advised her to give me a few weeks to plan my trip to Kenya to see her. In 1 month time, I landed in Kenya and the first thing I noticed was my mom had lost a lot of weight. I also noticed that she was getting tired really easily, even going up simple stair cases. I knew something was wrong, really wrong. As soon as we got home from airport, I asked her if I could see her “hardened and darkened left breast”.

Even before I could see it, the picture of breast cancer had already been painted in my mind but didn’t want to say anything. Her breast was obviously harder and darker. I also noted obvious lymph nodes swelling on left armpit and neck region.

The following morning, we returned to Nairobi hospital and a mammogram was performed. The radiologist called us and recommended a CT Scan of the whole body. The mammogram was positive for probable breast cancer until a biopsy results could return. CT scan showed lung nodules and similar nodules on her left kidneys.

My Mom had stage 4 breast cancer with metastasis to the lungs and kidneys. She had lost nearly half her weight since the last time I saw her in America. Even worse, her lung capacity was less than 50% of expected. Series of surgeries, radiation and chemotherapy was prescribed.

Breast cancer is a stealthy killer. She went through left lunch removal (pneumonectomy) and was started on chemotherapy. She also got a mastectomy of her left breast. Treatment was outdated and my mom succumbed to her illness a month after the surgery. REST IN PEACE MY MOM!

I feel I should have been more proactive from when she first mentioned about itchy breast feeling. I feel like if she had a mammogram a year before she started feeling the itch, she would have made it. I feel like I had the best chances in this world to save the life of the only parent I ever knew. I am guilty conscience every time I look at her pictures. It saddens me to look at the pictures we took when she visited me.

I’m a nurse and my guilt is even worse because I should have known better. It’s even worse because same year she visited me, a friend of mine asked me if I ever talk to my mom about breast cancer but I brushed the topic off. Jane Njoki always told me of how she makes sure both her parents get annual physical and screening. Since it’s not the norm is Kenya to go for screening annually, I never paid much attention to her. If I did the first time she asked me about breast cancer, my mom would be alive today.

Breast cancer took away my mother, my best friend and the only parent I ever knew. I was left ever depressed fighting guilt and self blame of her death. I have been on antidepressants since she’s been gone. My life changed has no joy and hopefully some day, I’ll come to peace within myself.

Today, I sponsor mammograms every month to a random person. I already do to my Mom sisters (my aunties) and I feel obligated to do this. I stopped partying and drinking since my mom passed. I dedicated the amount I was sending on party and alcohol to sponsoring women to get breast cancer screening. 2 years today, 5 women have been diagnosed and have started treatment.

My advice to anyone who is reading this is simple. Mammograms saves lives. Educate everyone you know and encourage them to get a mammogram. I feel my mom would still be alive if her beast cancer was caught early enough. The other thing I wish you could learn from my story is that any changes in breast should be investigated to rule out breast cancer. For her, she thought itchy breast discolored it and made the skin hard. Get your loved one tested way ahead of these symptoms.

My name is Joyce Kiama

Beth Mugo & Breast Cancer Pledge

Just over a year ago, president Uhuru Kenyatta Kin, Beth Mugo was diagnosed with breast cancer. This was not good news for anyone to hear a fellow prominent Kenyan politician fighting breast cancer. Hundreds of thousands more women are fighting breast cancer in Kenya as well but the road ahead of each breast cancer fighter is not the same. Some have it easier than others. It’s just the way it is.

beth mugo breast cancerBeth Mugo flew to one of the world best breast cancer treatment hospitals in the world located in North East America and later she was declared cancer free woman. Beth Mugo received surgery and chemotherapy and she may have future follow-up clinic visit with world top oncologists in USA. Beth Mugo belongs to Cancer Free Women league of women that should help others stay safe from breast cancer. After breast cancer pushed her to the edge of the cliff, Beth Mugo made a pledge.

While in the hospital, 17 women members of parliament visited Beth Mugo in the hotel she was residing in while going through cancer treatment in USA. The gesture was a positive one and millions of Kenyans witnessed true love for their leaders. Beth Mugo and the 17 female MPs agreed to launch a breast cancer center and awareness campaigns to help control breast cancer in Kenya. Beth Mugo even went on to hold promising talks with the university hospital and USA government officials on how she can spearhead a cancer treatment center in Kenya to fight not just breast Cancer but also other forms of cancer. This project is yet to be heard.

Does it mean that Kenyan politicians only respond to crises selfishly? Maybe I am missing something but does it mean breast cancer fight was only important to Beth Mugo when she was sick and no longer important after she’s cancer free? Beth Mugo owes to the Kenyan women, men and their families to live up to her pledges to fight breast cancer in Kenya. Her legacy would be far much stronger if she dedicated the rest of her life fighting breast cancer in Kenya.

Around the same time Beth Mugo was diagnosed with breast cancer, health minister Anyang Nyong’o was diagnosed with prostate cancer. Like Beth Mugo, Nyong’o joined the same chorus by pledging on how he would his powers in his position to fight cancer in Kenya. While millions of Kenyans believe that Nyong’o and Charity Ngilu made health industry in Kenya worse that they found it, Nyong’o too owes his fellow Kenyans to fight cancer and he should be held accountable for his pledges. Words are stronger than money and the curse of such unfulfilled promises to the public might come back and haunt him.

Breast cancer is number one killer in Kenya for women between age 35 and 55. The bracket could be higher but life expectancy for women in Kenya is about 55 years. Beth Mugo is among the lucky few to have seen her 70th birthday and survive breast cancer after age 70. The mortality rate of breast cancer in Kenya is above 80%. Over 80% of the known breast cancer cases in Kenya are diagnosed at late stages (3&4).  Kenya has less than 15 mammogram machines and 12 of them are located in Nairobi high end hospitals and clinics where only a handful like Beth Mugo can afford.

It is important that Kenyan leaders and government in general start recognizing breast cancer as a national calamity. Responding with hot air pledges during crisis is not going to help millions of Kenyan women faced by breast cancer today. Beth Mugo is a Cancer Free Woman and owes her pledges to Kenyans to fight breast cancer the rest of her life or does she? Otherwise, the curse of her words from her lips might come back and haunt her.

Kenyan Government Need to Work With Diaspora to Control Breast Cancer

Kenyans in Diaspora may hold the most important role in fighting breast cancer in Kenya today. More than 50% of Kenya educated doctors are practicing medicine abroad. Another more than 5,000 doctors left Kenya and later became doctors and dentist abroad and have never returned.

Breast cancer kills more women than HIV/AIDS and Malaria combined globally but the focus on breast cancer has been very minimal in Kenya and Africa in general. Over 70% cases of breast cancer diagnosed in Kenya today are stage 3&4, meaning the cancer has already spread regionally or to distance organs. Other reports have shown that 15% of newly diagnosed breast cancer cases are fungating, meaning they have exploded the skin.

But is the government of Kenya doing anything to help fight breast cancer in Kenya? I feel like breast cancer does not get the attention it deserves in Kenya and Africa in general. The government and regulating bodies should make re-entry of Kenyans in Diaspora easier and lucrative. An average doctor in Kenya earns about $2500 a month, making doctors flee abroad as “economic refugees”.

Kenyans in Diaspora could also contribute in creating breast cancer awareness. It is estimated that one in every 3 families in central province has or knows someone in Diaspora. This translates to powerful information, motivational and financial resource that can help reduce mortality of breast cancer in Kenya from 80% to 50% in 3 years. If every Kenyan in Diaspora sponsored their family to get breast cancer screening, this number could drop drastically.

If the government made technical and legal arrangement to re-import expertise back home, breast cancer and all other diseases killing Kenyans could decrease. Kenyans in Diaspora have been exposed to current treatment modalities, current research and treatment options. Many more have been involved in breast cancer awareness campaigns abroad, something that Kenyan women are missing.

Sponsor your Mom, your Aunt, your neighbor or a friend to get breast cancer screening, education and mammogram today. It could be the most important thing you have ever done for them. It cost less than a weekend night out abroad.

The conclusion is Kenyans in Diaspora hold a great knowledge and financial resource in fight against breast cancer. Unfortunately, no one family is immune to breast cancer and often, breast cancer is fatal in Kenya and rest of Africa. The government bodies needs to rethink how they can tap onto diverse knowledge, talents and financial resources from Diaspora to control diseases and improve quality of life

Sexuality and Intimacy After Breast Cancer

painful sex after breast cancerMany women undergoing breast cancer treatment or those who have gone through breast cancer treatment may get painful sexual intercourse. Lets lay it on the table and talk about another common hurdle breast cancer heroes encounter. breast cancer treatment approaches like surgery, radiation therapy, chemo-therapy and estrogen modulation therapies can greatly alter sexual experience.

While most breast cancer survivors are grateful and excited enough to be cancer free, and most of breast cancer survivors could care less about sex immediately after conquering the disease, sex is an important part of human life. Women should not be without sex especially after coping with breast cancer treatment as this could add on to body disfigurement related stress. Women should be supported and encouraged to engage in sex. It’s time the world accepted breastless and scarred breasted women as normal. Sex is a good communication tool for lovers and it should be addressed without shame or reservation. Let’s talk about the commonest causes of painful sex after cancer treatment.
  1. Vaginal dryness
  2. Muscle Spasm

Vaginal Dryness

Sex feels great and painful sex can be heartbreaking. Sex is pure friction but vagina is adapted to withstand this friction. In fact, sexual friction is what causes pleasure in sexual intercourse, not lack thereof. Vaginal walls are made up of several layers of cells naturally adapted to protect deeper layers from getting damaged by sexual friction. These protective cells also produce lubricants that reduce the amount of friction.
Over 50% of breast cancer cases are estrogen receptor positive. One of the treatment combination therapy is to block estrogen production or action on receptor cells. Vaginal wall cells are maintained by estrogen. Lubricant production is another function of estrogen hormone. When attempt to save breast cancer heroes lives involves estrogen therapy, vaginal wall dryness occurs causing painful sexual intercourse.
Most chemotherapeutic agents target fast growing/generating cells (like cancer cells) in the body. Cells naturally adapted to withstand friction and produce lubricants belong to this group, among other cells like hair follicle cells and nail germinal cells. This explains why hair and nails falls off. Vaginal walls cells and other cavity cells like oral cavity are easily damaged by chemotherapeutic agents. Most women who have undergone chemotherapy have had oral sores.
Oxytocin, also called “Love Hormone” is a very important hormone in sexual pleasure experience. While oxytocin is produced by pituitary gland, stimulation of breast nipples have shown to increase its production. This oxytocin spurt has shown to have effect on orgasmic experience and relaxation of vaginal walls.
Mastectomy and other breast surgeries usually damage areola (nipple dark part), the most sensitive breast tissue decreasing sexual pleasure. This explains why breast fondling before intercourse is not only pleasurable but also causes arousal and lubrication. With mastectomy or surgeries that may severe breast nipples, sexual intercourse may be painful due to poor lubrication (in addition to chemo damaged lubricant producing cells) and tension of vaginal floor.

Vaginal Muscle Spasm

Oxytocin production causes uterine walls to contract and vaginal walls to relax, making delivery of the baby easier. When vaginal walls/floor is deficient of lubrication (estrogen) and oxytocin, sexual experience can be very painful. Initial pain causes even more pelvic wall contraction causing even more pain.
Stress related to dealing with breast cancer treatment worsens these vagina wall spasms. Pleasurable sexual experience in women is a combination of many factors, not just one. Emotional or physical stress can completely alter sexual pleasure or even inhibit arousal.

Remedies:

Oil based lubricants may prove helpful in situations where dryness is the primary cause of painful sexual intercourse.
For women with estrogen receptor positive breast cancer, talk to your doctor about estrogen related options like estrogen ring (estring). No not use such options without asking your oncologist.
Foreplay and use of toys may help in decreasing vaginal muscle spasms before penetration. The couple should use toys that are comfortable for both of them to enhance the overall sexual experience.

Cost of Mammogram in Kenya. Does it Matter?

So, if breast cancer is such a killer in Africa, how comes women are not lining up to get mammograms in cities like Nairobi? Is it the cost of mammography in Kenya that is too high or is it that there are no equipment to service all the women at risk? Is it that women are not even aware of the risk or it is that no one really cares about breast cancer?

The truth is, all of the above factors contribute to this. In a simple random survey done in Kiambu Kenya, 71% of women of all women interviewed have never heard of the word “Mammogram”. 88% of women over 40 years old of those interviewed have never heard of mammography in Kenya. Only 11% have heard about mammography and only 7% have ever had a mammogram. None of those interviewed had a preventive screening mammogram

Cost of Mammogram in Kenya
Mammograms in Kenya have no standardized price. The cost primarily depends on where it is taken. Some hospitals like Nairobi Hospital charge around KSH8,000 or about $100. Compared to world average, this is relatively cheaper than most countries. But the cost of $100 for preventive mammogram is not affordable to over 80% of susceptible women in Kenya. Even 25% of that price is not affordable to 80% of Kenyan women. The only way to increase the number of preventive mammogram screening is through government funded project or donor funded mammography.

Mammogram Machines in Kenya
Kenya has a population of about 45 million people and about 18-20 million women are over 40 years old, requiring annual mammograms per Center of Disease and Control (CDC) recommendations. While mammogram machines are not the most expensive gadgets Kenyans can afford, it is discouraging to investors to buy equipment but consumers cannot afford to pay for tests. It’s heartbreaking to note that over 90% of all mammograms done in Kenya today are done for diagnostic reasons, not preventive reasons. Kenya has just over 10 mammogram machines and 95% of all these machines are located in Nairobi

Lack of Knowledge
While they say “Ignorance is a bliss”, the kind of ignorance we face in Kenya is not a bliss. This is the ignorance that kills because not knowing about breast cancer does not stop breast cancer from killing young moms and sisters. The level of awareness about breast cancer in Kenya and the rest of Africa is extremely low. We have to create necessary awareness starting with the closest woman we can reach.

Kenyans living abroad should really consider informing their loved ones about preventive mammograms. Sponsoring mammograms for loved ones in Kenya could help save a life of some one you really love.

Expertise
Believe it or not, there is not one single mammography trained specialist among the few radiologists in Kenya. The few radiologists in Kenya have cross-trained across many disciplines to accommodate many under-served areas of diagnostics. Mammography technicians are as well cross-trained across many disciplines and have no mammography specific training backed by continuous education and skills update as technology and evidence based practice evolve.

CONCLUSION
The cost of mammography in Kenya is not standardized but even the most expensive hospitals charge below developed countries average price. Mammography machines are expensive and sometimes not the most worthwhile investors can channel their money to. Majority of Kenyans live below poverty line and cannot afford even highly subsidized mammograms annually. Majority of women in Kenya and all over Africa have never heard of mammograms. Lack of awareness is the biggest contributor to poor breast cancer screening in Kenya.