Breast Cancer at Age 26. A Kenyan Breast Cancer Survivor Story

I am Dorcas  Njeri Njuguna from Nairobi, Kenya. I was diagnosed with breast cancer stage 0 when i was 26years of age, single and with no child. It was very devastating and especially the thought of losing a breast and maybe never ever going to bear a child neither  get married.

I had never met a cancer survivor in my life and so there was no exemption that i was going to die in a short time and especially if i begun my chemotherapy. That day when the doctor told me of my diagnosis i cried the whole night, wrote my eulogy and was ready to die.

Thanks to my family and friends who were of great support during this time, because they really encouraged me, sourced information on cancer which they shared with me and I later came to accept the situation as it was. Was lucky to get treatment options from my doctor which included conservation therapy but that meant I had to travel out of the country. I underwent axillary lymph dissection two weeks after having gone through a lumpectomy.

Luckily i was oestrogen-progestron hormone receptor status negative and no metastasis. This was later followed by a liver ultrasound, bone scan and all was well.

In November 2006 I begun chemotherapy six sessions monthly followed by linear acceleration Radiation 35cycles in Aga-khan Hospital Pakistan. I believe early detection saves life. Ever since I thank God for I am cancer free. Now am a mother to a 20months old baby boy and a wife. Ever since I do breast cancer awareness campaigns every year in different towns to educate women on breast cancer. I would love to volunteer in your organization during your mission to Kenya.

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

Nursing a Breast Cancer Patient: Pain Kills

Breast cancer patient in both physical and emotional pain

I choose to give this story because it still bothers me 4 years down the road. My name is Linda and I am a critical care nurse in a big city in America. Breast cancer patient hurts both physically and emotionally, something we deal with everyday especially being a cancer center hospital.

Four years ago I took care of a young 35 years old lady with end stage metastatic breast cancer. This day still remains fresh as if it happened yesterday. For those of you who are in healthcare, I beg you to stand firm and advocate for your patients as if you are fighting for one of your own.

dehiscedMy 35 years old had been fighting breast cancer well over five years. This time, her best ever fighting spirit was on all time high. Her breasts were scarred, full of flaps and patches. Some of the scars show they had dehisced and repaired leaving heartbreaking scars. But that was not the toughest battle yet.

On this night, she was transferred from oncology unit to ICU after a round of Chemo.  For those familiar with inpatient healthcare protocols, a patient whose oxygen saturation drops below 90%, change in mentation, heart rate in 130’s meets the criteria of being admitted to intensive care unit (ICU). On top of that her liver profile looked really bad. Her skin color was yellow due to liver failure secondary to metastasis. Excuse me if I sound too much like a text book nurse.

Series of radiological tests were performed to make sure she didn’t have a collapsed lung or pulmonary embolism. These tests showed nothing way out of normal and the oncologist together with intensivist gave me orders to continue watching the patient. The patient vision had been taken away by chemo and the only good special sense she had was hearing. She could easily recognize me because of a foreign accent.

Supraventricular tachycardiaThe heart rate kept on going up and orders to give her fluids and Morphine were executed. My eyes could not hold tears anymore and I became a bitter empathetic nurse taking care of a near helpless patient. Few hours later, I sent a specimen for complete blood count to the lab and her white cells count was near ZERO. We put the patient on neutropenic precautions, simply meaning anyone is a danger to the patient as she had no immune defense left in her system.

My patient had no family close to her, just a few friends that came to see her, one of them, a Briton. Now in neutropenic precautions, no one was allowed to stay in that room for long and a safe distance from the patient was enforced. The heart rate kept going up and up and now it’s almost 0200 AM. This time, I am dealing with heart rate of 160-180 beats per minute. The heart cannot withstand this rhythm/rate for too long before it gives up and so I had to act and act fast.

Numerous calls had been placed to the oncologist as the patient kept complaining and crying of pain. The dose I had initially was for morphine 2 mg every hour as needed. The second call I placed, the dose was doubled to 4 mg every hour as needed for pain. This did not make a difference,

The oncologist was getting irritated because of my endless calls at late hours of the night, but I was not going to give up on this lovely lady. The oncologist argument was that the patient oxygenation was poor and may potentially have lungs related problem. He was also concerned that due to liver involvement, the metabolism of opiates may be poor and this could further compromise breathing and oxygenation.

For those in healthcare, especially nurses and doctors, I am sure you can follow me on this and agree it is a true prudent rationale from the oncologist. The oncologist consulted the cardiologist and he ordered adenosine push to correct supraventricular tachycardia (heart rate above 150).

Before I could even fax the order to the pharmacy, the patient called. She could barely talk. She said “Linda, I want you to get lethal injection and kill me or get a baseball butt and hit my head so I won’t have to feel this.

Angry-DoctorMy courage, empathy and bitterness rose to the threshold that I could not hold anymore. I placed another call to the already upset oncologist, this time with demands, not requests. A frustrated voice answered the phone and I started…

“I need better pain control for this patient from you right now, or else, you come in and take care of her. I need strong medications for pain and if she cannot support her airway, better be on a ventilator (life support machine) that suffer like this. I need dilaudid (hydromorphone) drip in Patient Controlled Analgesia (PCA)”.

The oncologist had never heard someone come that strong to a point of demanding which drug they want. He replied…calm down. Go ahead and start dilaudid PCA …..” Give the patient 2 mg push now before starting the drip….”. In 2 minutes, I pushed the 2 mg and the heart rate dropped quickly from 180, 150, 110, 80 and before it got to 60, the whole team was at the door with crash cart. We all thought the patient heart had given up.

At heart rate of 70, the patient stabilized. Blood pressure improved. Breathing rate lowered from 40’s to low 20’s. Her oxygen saturation went up to above 95%. We changed her from 100% non-rebreather mast to 2 liter nasal canula. She was in pain and now her pain is under control.

15 minutes later, she asked for ice water. She drank. She then requested extra blankets and off she slept. She was in pain but no one thought of pain as the reason why all her vital signs were off the limits. No adenosine for her.

Good night sunshine. You are my hero. 3 days later when her white count was starting to come back up, she passed on. She came to an end of her pain. I attended her burial and to this day, I still feel it like my own family.

Again, Good night sunshine and rest in peace.


Fungating Breast Cancer. Lucy’s Story

Summary: Breast cancer in Sub-Saharan is rarely diagnosed until late stages, sometimes when nothing else can be done. Cancer Free Women reaches out to educate women in remote areas of developing countries through churches and local seminars. Breast cancer patients are often neglected and abandoned in hospitals and left to die with no one by their side. Supporting our mission could help one life like the one you are just about to read

Meet Lucy:

Lucy Ncororo, 40 years old with breast cancer, was a patient admitted at the Meru District Hospital in Kenya for six months. No family or friend ever came to see Lucy since she was admitted. Lucy was admitted at Meru Hospice on 18th August 2002 after general hospital concluded her fungating breast cancer was terminal. In hospice, Lucy got a chance to narrate her ordeal. There are thousand such stories in Kenya…read on and share.

She had been married for about 10 years but divorced because she could not bear children. After the divorce, Lucy moved to live in a rented house where she met a man and they became lovers. This didn’t last for long as the man was already married with three children (as she later discovered).

Breast cancer knocked Lucy’s door midst her already complicated life. When Lucy started ailing, her temporary lover advised her to go back home, which she did. Her parents and siblings took her to Meru General District hospital. This was the last time she ever saw or heard from her family. She was abandoned. Lucy lost contact with her temporary lover who evidently only needed her for the good times and not during fight against breast cancer. In many African cultures, breast cancer is seen as punishment from gods for being unfaithful to the husband.

Lucy was divorced by her 10 year husband because she could not bear children but during her admission, she was not aware that she was six months pregnant with her new lover’s child. She was shocked to learn of it later as she counted her last days in this world. On 21st May 2003, God blessed Lucy with a bouncing baby boy by the name Moses Ntungai (means Man of God). Lucy felt that the coming of Moses during the hardest times of her life was a show of God’s mercy and a gift to her since she had longed to carry a baby for many years.

fungating breast massThe happiness of finally having a son was short-lived. Lucy’s fungating breast mass was growing bigger and bigger by the day. Her pain and suffering was becoming more and more intolerable. The mass became infected and need surgery though her health condition could not have allowed it. She could not have survived a surgery, if there was one available. Lucy was abandoned by her friends, family and lovers to die in the hospital. Meru Hospice was her new home. Doctors could not operate on her. Knowledge and resources were not there.
Meru hospice staff found that she and her baby had no clothes at all. She had no energy to feed her very young baby boy who laid beside her completely oblivious of what was going on. Meru General Hospital staff tried their best to ensure that they were comfortable but with little success due to lack of financial resources and personnel. Meru Hospice decided to shoulder her burden free of charge and provide her with whatever she needed. Her pain continued to become too excruciating as she fought hard away from death that was imminent. She needed high doses of morphine and other drugs, wound dressing material for the wound and clothes. The hospice bought clothes and toys for her ever-smiling baby.

Lucy’s health was deteriorating as days went by. With the help of hospice staff, Lucy was emotionally and spiritually in terms with her condition and what lied ahead. Lucy, despite all what’s surrounded her had a reason to reason to smile.
MosesBaby Moses at 5 months old and was doing really well; he was looking bright and healthy. But it was becoming progressively difficult for Lucy to take care of him. No relative ever came to visit her. She is abandoned to die alone. She depends on relatives of neighboring patients to assist her wash her clothes, change and feed her baby.
Meru Hospice took a further step and asked her if she wanted her son to be adopted. Lucy welcomed the idea with great relief since she had been thinking a lot about it. Moses now has a new home.

Another thorny issue was the question of her burial. Lucy’s relatives were certainly not going to come and bury her if they had not come to see her during her fight with fungating breast cancer. They probably feared being left with the responsibility of taking care of baby Moses. Usually, abandoned patients who die at the District hospitals are buried in mass graves. Lucy asked the hospice not to allow this to happen to her. The hospice made arrangements to oversee her burial and gave her the dignity she deserved.
Rest in Peace Lucy.

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moses adapted

Lucy’s son finally got adopted. For more information about Lucy’s Son Noses, contact us if you would like to reach out and help

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Story adapted from Here