Introducing our Second place winner for the Angie Courage award- Sali Hoe Foundation
JENNIFER’S TRUE- LIFE CERVICAL AND VAGINA CANCER STORY
Jennifer’s cervical and Vagina cancer journey started in 2013 when she felt severe itching with an open sore around the vulva, severe pain in her lower abdomen, bleeding after sex and bloody discharge from her vagina. According to her she was ignorant of cervical cancer and she went to several hospitals but her condition grew worse with medications and she kept it secret because of the stigma associated with sexually transmitted diseases. Most medical doctors she consulted thought it was just a mere sexually transmitted disease and on different occasions she was treated for candidiasis, urinary tract infection, gonorrhoea, Syphilis etc. In 2016 she decided to go to University Teaching Hospital Gwagwalada where she had a series of treatments and a test commonly known as pap smear.
Fortunately for Jennifer, the result was negative for abnormal cells and Human papillomavirus (HPV) which is the most important risk factor for cervical cancer but sadly, it was a wrong diagnosis. This situation is one of the disadvantages of Pap Smear screening. For about 60 years, all cervical cytology samples were handled this way and are relatively inexpensive but it does have some disadvantages. One of the problems with conventional cytology is that the cells smeared onto the slides are sometimes piled up on each other making it difficult for Pathologists to see abnormal cells through the microscope and most often health professionals report patients result as normal cells or negative for HPV.
According to her a surgery was done and the doctor requested for a cervical biopsy investigation (cervical biopsy is the removal of a small piece of tissue for a microscopic examination by a Pathologist). The Pathologist did the diagnostic test and confirmed she had cervical cancer caused by human papillomavirus (HPV). Further investigations were carried out and the results indicated that cancer has metastasized from the endocervix (primary site: the cervix) to the ectocervix, (secondary site: vulva, vagina).
In 2017, she was referred to National hospital Abuja for further cancer treatment known as (chemotherapy and radiotherapy). She couldn’t afford it, nevertheless, she visited the hospital and unfortunately for her, the radiotherapy machine was faulty at that time.
I will pause to describe my own experience. I was at National Hospital Abuja in 2018 to carry out cancer research but I ended up as an emergency counselor and I counseled some cancer patients waiting for radiotherapy treatment. The cancer patients told me the actual cost for radiotherapy was about N600, 000, in addition to chemotherapy which was about N1,000,000 and above depending on the number of cycles a patient needs, and the payment has to be completed before the treatment. The bombshell was when they said National Hospital Abuja was the only place where one can access radiotherapy treatment in Nigeria as at 2018. The information i got was that three Teaching Hospitals in Nigeria had faulty radiotherapy machines, a shocking revelation.
Back to Jennifer’s story, so she decided alternative treatment should be the easiest way out since she couldn’t afford conventional treatments, according to her from 2017, she started alternative treatment (herbal medicine) and she wasn’t getting better but there was a glimpse of hope when SaliHoe Foundation took over her case, then she was bleeding profusely from her genitals, with her vulvar completely destroyed thereby leaving her with what does not look like the anatomy of a female vagina.
SaliHoe Foundation assisted her with funds and palliative care services but unfortunately, cancer has spread to vital organs in her body. The last hospital we consulted diagnosed her at stage IV. Although, at that stage a successful medical treatment or survival rate was zero. Only Divine intervention would have saved her..
Sadly, she passed on in 2020 after a tough long battle, without her husband’s support and with minimal aid from the society. Early detection of cancer would have probably saved her.
Lessons to be learnt from Jennifer’s story include:
She visited rural community hospitals that couldn’t diagnose her condition early, physicians assumed she had sexually transmitted infections which could be chlamydia, gonorrhea, urinary tract infections, syphilis and these infections could mimic cervical cancer.
She had a wrong diagnosis, Pap Smear screening for HPV has some disadvantages, test results are not correct most times.
Delayed diagnosis because she couldn’t access proper medical tests, the first extensive examination and proper diagnosis she had was in 2017 but she visited other local community hospitals from 2013 .
She had no knowledge of cervical cancer, thus, ignorance remains the underlying risk factor for most Nigerian women.
She had no funds to pay for her hospital bills, also lacked health insurance.
Inadequate medical facilities/medical equipment and inexperienced health workers at the local health centers she visited in Nigeria.
Late detection lowered her chances of survival, early detection of cervical cancer saves lives.
She was afraid of stigmatization.
SaliHoe Foundation cancer control activities so far have been outreaches to communities. Our organization’s efforts in cancer control is to create awareness on cervical cancer prevention, end stigmatization associated with the disease. SaliHoe Foundation cervical cancer prevention and stigma eradication in Nigeria include:
Currently we are working on establishing a free Cervical Cancer Screening and Vaccination Center where women can have access to free cervical cancer screening with Automated Machines, case management, vaccine, re-screening and follow up care (palliative care services).
We have been creating cervical cancer awareness on different television networks and radio stations, secondary schools, seminars and community events. We distribute free handbills, pamphlets and booklets on cervical cancer prevention and stigma eradication (self explanatory booklets with diagrams and interpreted in the three major languages in Nigeria). We ensure women affected by cervical cancer have access to the best treatment, support and information.
Part of our sensitization programmes is to ensure significantly greater numbers of young girls/ women who are eligible for cervical screening or the HPV vaccination really understand the importance of cervical cancer prevention, making an informed choice and taking up the offer.
We are planning to run targeted national campaigns to facilitate improvements and change in health policy and practice.
We do a monthly visit to local health centers in different communities with relevant information and self educational materials for health workers, training them on how to champion quality in local health practice and to promote best cervical cancer prevention and treatment programmes.
We are building and fostering partnerships in Nigeria and worldwide that will enable us to have the greatest impact possible, sourcing for sustainable funding. Successful community programmes to control cervical cancer depend on the commitments of a variety of committed partners. Such partners will help strengthen and maintain SaliHoe Foundation Programmes by contributing the expertise, connections, resources, and enthusiasm to the activities of the programmes.
We have established programmes like anti cancer clubs and young girls to motherhood campaign/clubs in female secondary school with educational materials and children are educated during their club activities on cervical cancer prevention and total abstinence (the avoidance of premarital sex, HPV is the major cause of HPV related cancers and it is sexually transmitted).
We offer free confidential counseling classes/sessions, phone conversation and we teach women to open up to close family members about their diagnosis for emotional support. We educate women on how to manage stigmatization with their medical diagnosis.
We offer free palliative care /end-of-life care services and pay medical bills for women who can’t afford to pay their medical debts.
We have launched a project- BECOME AN ADVOCATE FOR VACCINATION. We encourage people to take the role of an advocate for vaccination within their community. We educate them on how to share evidence-based information, updates on HPV vaccine efficacy and safety with family, friends and colleagues. By staying informed, advocates can provide accurate and reassuring information, helping parents make informed decisions about HPV vaccination for their children. Vaccines remain the most effective prevention method against cervical cancer. Advocating for vaccination is a huge effort in cancer control.
Our core value in cancer control is awareness creation, ignorance remains the underlying risk factor for most Nigerian women. (Research conducted by SaliHoe Foundation in 2010; to estimate the percentage of women that are ignorant of cervical cancer and education needs).
Cervical cancer is highly preventable and no woman should die of the disease.
Story written by Ifeyinwa Onwukeme for Sali Hoe Foundation
