Fear Kills: Early Detection is Key

ST.  JOHN’S, Antigua – A middle-aged woman presents to her doctor’s office with a foul-smelling, swollen, cracked and oozing left breast. She is there after several months of self-treating with over-the-counter medications purchased repeatedly by a concerned relative turned enabler.

Dousing herself daily in perfume does little to mask the stench and the olfactory assault visibly distresses other patients in the waiting room, prompting the receptionist to relocate her to a separate room.

Tests expedited in just a week confirm the doctor’s suspicion of breast cancer. It is stage three. Five months later the woman, a secondary school teacher, is dead from the disease. This is not a case study in a medical textbook from the 60s or 70s when cancer was referred to as the Big C in hushed tones.

The tragedy occurred fewer than five years ago in Antigua and Barbuda, a country in which breast cancer continues to kill more women than any other type of cancer. This statistic mirrors the global trend, with data from the World Health Organization (WHO) revealing that approximately 2.3 million women were diagnosed with breast cancer worldwide in 2022. Six hundred and seventy thousand died. That equates to a woman diagnosed every 14 seconds while one dies every 10 seconds from the second most common cancer in the world.

In the Caribbean region, breast cancer accounts for 14%-30% of cancer deaths which is twice as high as in the U.S.A according to the Caribbean Public Health Agency.

Breast cancer is a disease in which abnormal breast cells grow out of control and form tumours. If left unchecked, the tumours can spread throughout the body and become fatal.

The incidence of the disease is approximately 36% in Antigua and Barbuda based on data collected between 2016 and 2019 from the Oncology Department at the lone public hospital, the Sir Lester Bird Medical complex. Of 84 new cases registered during that period, 55% had advanced breast cancer while 41 per cent were between the ages of 51 and 60.Credit: WHO Cancer Country Profile Antigua and Barbuda 2020

But, what causes someone like an educator, whom society would consider intelligent, to neglect a health issue that could be non-fatal if caught in the early stages?

Cognitive intelligence and emotional intelligence do not always synchronise during crises, so that even the most intelligent person can respond irrationally when faced with certain challenges explains Counselor, Koren Norton.

“It has nothing to do with how smart a person is or what they do for a living. Unfortunately, some people cannot handle the diagnosis of a potentially life-changing illness and so they refuse to go to the doctor until it’s too late. For them, the doctor represents potentially bad news,” she tells the Caribbean Media Corporation (CMC).

Financial concerns, belief that it is not a serious issue and being too busy also play a role in delaying seeking out medical attention.

Some might think that the aforementioned case is rare and extreme given that women are often labelled as hypochondriacs for seeking medical attention for the “slightest thing”.

But it is not, according to one of Antigua and Barbuda’s leading Gynecologists/Obstetricians, Dr. Dane Abbott. “It is unfortunate that it got to that stage. We see cases where patients have cancer and all the symptoms are there and it should be evident to the patient that they have cancer but they just seem to be in denial. So that does happen quite often. Too often,” he laments.

He, however, agrees that unlike men, women generally pay closer attention to their health.

Case in point, 53-year-old cancer survivor Michele Lynch who found a lump in her left breast as she “admired” herself in the mirror while vacationing in the United States (U.S.) in 2008.

Twelve years later, her daughter Xavian Christopher, then 32, discovered her cancerous tumor while curiously examining a scar from a life-saving emergency surgery for a ruptured ectopic pregnancy.

In both instances they first shared the grim detections with a loved one and soon after sought medical attention. They say the need to know outweighed any fear about possibly having the disease.

Now advocates for breast cancer awareness, the duo willingly tell their stories for the benefit of other women.

However, they do not want to inconvenience me with the “long” 40 minute drive to their home in Freetown, located in eastern Antigua. So, we agree to meet at the National Public Library in the capital St. John’s, on a day that both of them would be in the city. That happens to be a rainy Monday.

Just as I pull into the full car park, a Whatsapp message from Michele indicates she is 20 minutes early and waiting in the lounge.

On reaching the first floor landing that opens up into a large seating area, a woman wearing trendy sun-glasses catches my eye. The oversized, square-shaped white and black frames contrast sharply with short rust-coloured curls and her fluorescent pink polo shirt. It is Michele. The semi-light material clings to her chest revealing that the left breast is almost non-existent. The result of a radical mastectomy she discloses later during an hour-long interview that seems more like old friends catching up after many years.

Xavian, sporting an extremely low auburn ‘fro and a radiant smile rivalled only by her mother’s, soon joins us. She is among a growing number of women under 50 being diagnosed with breast cancer globally.Credit:Illustration by Joules Garcia for Verywell Health

For example, in the U.S. diagnoses of estrogen-receptor positive tumors have driven the surge over the last two decades. Estrogen is fuelling these cancerous growths according to a study led by researchers at Washington University School of Medicine in St. Louis. Senior author (for the study), Dr. Adetunji T. Toriola says that since most women begin regular breast screening at 40, younger women tend to be diagnosed when the disease is more advanced and more difficult to treat.

FAMILY TIES

Xavian, 35, does not fall into that category. Her cancer was found at stage one. This is when it is only in the breast tissue or it might be found in lymph nodes close to the breast with Cancer Research UK attributing almost a 100% survival rate of five years or more.

The young woman’s breast cancer journey begins with the death of the child she was carrying in April 2021. She finds out she is pregnant one week and loses the baby the next.

“I was at the first appointment to find how everything was going. The doctor said something is not right, you are bleeding internally. But I didn’t feel anything to say something was happening to me or the baby. She told me to go straight to the hospital because if I don’t I could possibly die. So straight to the hospital I went. My life was saved twice in that year alone,” she reflected.

Incident cancers as a percentage of total cases, Antigua/Barbuda (2001−2005); thirty-two cases (6.5%) had no recorded age. Credit: Antigua/Barbuda Cancer Incidence StudyDuring an emergency operation – a salpingectomy – the surgeon removed the fallopian tube that had ruptured as a result of the foetus growing there rather than in her uterus.

Xavian has no time to grieve the loss of what would have been her second child as the discovery of the lump plunges her into a second health crisis.

She informs her doctor about it two weeks later during a checkup for the surgery and is sent for a mammogram. However, the tumor does not show up on the imaging because the breasts are too dense, as is typically the case in women under 40 – the age at which it is widely recommended having a first mammogram, once there is no family history of the disease.

A subsequent ultrasound, done for good measure, picks up the mass. The doctor then recommends a biopsy but the tumor is so small that a lumpectomy – the removal of the entire mass for testing – is done instead.

The dreaded cancer diagnosis comes at the beginning of October 2021, seven months after Xavian chanced upon the lump.

“The doctor called Wednesday and asked if I could come to the hospital Friday. He refused to discuss the matter over the phone, so that made me know I had cancer,” she explains. Each word the oncologist utters during the appointment intensifies Xavian’s mind fog, but the presence of her husband helps her through the ordeal.

On leaving the hospital she immediately seeks solace from someone who would understand what she is going through.

“I called mommy ready to cry down the place and she is crying, but she did not want me to know she was crying. She took it on more than me.”

Simultaneously, the two women look at each other, grins transforming into broad smiles and eventually soundless laughter that makes their bodies dance.Roseann PIle Photo

Seconds later, Michele admits that her daughter’s cancer news hit harder than when she herself was diagnosed in February 2009. “That is something you would not want to hear for your child. You have a child, you plan the child’s future not their demise,” Michele says somberly.

In fact, Xavian, then a 19-year-old student at Antigua State College, was foremost in her mother’s thoughts when she found her lump.  She declined the opportunity “to do everything”, beginning with a mammogram in the U.S. because she knew that if she had cancer, the doctors would want to keep her up there for treatment.

“I thought it would be unfair, highly traumatic for me to be up there undergoing something like that. I did not think it was the best decision for me to stay there, have her here. She would not be doing her school work, my mind would be on her.”

A day after returning to Antigua, Michele visits her doctor. Tests are ordered.

EVERY WOMAN’s BREAST CANCER IS UNIQUE

The first biopsy is inconclusive. So, a second one is done, with Michele hoping for the best but expecting the worse. It is five months, from finding the lump to being told she has stage three breast cancer that has spread to the chest walls.

The oncologist recommends a lumpectomy. Instead, Michele opts for a radical mastectomy that was done two weeks following the diagnosis. “I told them to take it all because I did not intend to do the job twice.”

Fifteen and a half years later, all the details are still etched in her mind. From the 12 lymph nodes removed during surgery– four were infected with cancer – to the 16 rounds of chemotherapy that followed. Somewhere in there, she went to Trinidad for radiation which was not available in Antigua and Barbuda.

She remembers going to work as normal, taking Fridays off for treatment, with the weekends for recovering. “I vomited once and took sick leave once.| I got burnt during the radiation and that was not nice.  Then, I did Herceptin treatment intravenously once a week for 52 weeks. Then I had to take hormone treatment internally for five years, then just had follow-ups and checks. I think I handled chemo well.”

Xavian was not so fortunate during her eight rounds of chemotherapy and 20 sessions of radiation almost three years ago. However, she is happy that she caught the disease “very early and got it squared away”.

Halfway through eight rounds of chemotherapy she catches COVID-19 and passes it on to her husband. Cancer treatment resumes once she is given the all clear for COVID and a month after completing chemo, she receives 20 rounds of radiation – once per day for about 20 minutes.

2027 will be a big year for her. She will complete five years of hormone therapy and will be declared a cancer survivor like her mother Michele.

Hormone therapy, also called endocrine therapy, works by either decreasing estrogen production or blocking estrogen from binding to these receptors. It only works on cancers that are hormone receptor positive.

Approximately two out of three breasts cancers are hormone receptor positive according to the American Cancer Society.

Estimated increases(%) in new cases of and deaths from breast cancer based on country classification using the United Nations Human Development Index 2020-2040The five year survival rate exceeds 80% for early localised breast cancer when early detection and basic treatment are available and accessible. However, the generally accepted milestone for women in resource-poor settings is low, ranging from 10-40% because many of them are diagnosed at an advanced stage of disease according to the WHO.

TESTING FOR THE CANCER GENE

Since Michelle’s diagnosis in 2009, five other women in her family, including her only child were diagnosed with breast cancer, with one of them succumbing.

However, mother and daughter say no when asked if they want to take the BRCA gene test.  It would give them a clearer idea of whether they are likely to get a second cancer.

“We already had the disease so we did not see the need to be tested,” they explained almost simultaneously.

However, fifty-one year old Jackie Browne was only too eager to know her “status” given her family history with breast cancer. Her mother and two aunts died from it before they were 50 years old. On her father’s side, her grandmother, three aunts and a cousin, mostly in their sixties.

Jackie tells CMC that by the fourth death, her possible hereditary predisposition was etched in her brain as were the pain, suffering and psychological turmoil that ravaged the body and mind of her female relatives. “I often wondered if this was to be my fate,” she added.

It was in 2010, five years after migrating from Barbados to the U.S. that she became aware of the test that could tell whether she was likely to get breast cancer.

She is at the time having her yearly gynecological checkup and impulsively mentions to the doctor that the anniversary of her mother’s death is the following day. Having taken Jackie’s medical family history three years prior, he knows it was from breast cancer.

So, given her clear distress, he suggests that she considers taking the BRCA gene test. It uses a sample of blood, saliva, or cells from inside the cheek to look for changes in BRCA1 and BRCA2 genes that may increase one’s risk of cancers such as of the breast and ovaries. The BRCA genes suppress cancer cells and stop them from mutating.

Even now, the middle-aged accountant recalls leaving the doctor’s office feeling in control of her health and life. She took the test. It came back positive for BRCA1 mutations. “Not the results  I wanted, but it was better to know than to be waiting on time to tell,” Jackie said in the telephone interview from her home in Boston.

About five to 10 per cent of breast cancers can be linked to known gene mutations inherited from one’s mother or father with mutations in the BRCA1 and BRCA2 genes being the most common.

On average, women with a BRCA1 mutation have up to a 72 per cent lifetime risk of developing breast cancer. Women with a BRCA2 mutation have up to a 69 per cent risk. Breast cancer that is positive for either of the two mutations tends to develop more often in younger women like Jackie, who was 37-years-old when she took the test.

She and her doctor discuss the options – enhanced screening, surgery, medications, lifestyle changes and genetic counselling – at length. Without hesitating, she decides on a prophylactic risk-reducing mastectomy that leaves her flat-chested but with only a 5% risk of developing breast cancer. “Those are great odds,” she declares.

She also opts not to have reconstructive surgery, nor does she wear a prosthesis. “I never liked having breasts so I feel comfortable without them. Can you imagine lugging around 38 Double Ds? It’s a nightmare, not to mention they were heavy as hell,” jokes Jackie who is 5ft 5 inches and weighs 130 pounds.

While Jackie revels in the freedom of having no breasts, Michele in Antigua says losing one was the most challenging aspect of her cancer because they are part of what makes her a woman.

There is a clear hereditary disposition to breast cancer. However, 85% of those diagnosed with it have no family history link according to Johns Hopkins Medicine, a leading health system and academic institution in the U.S.

It is for this reason that it advises that a healthy diet, exercising regularly, a healthy weight, breast feeding, avoiding smoking and limiting alcohol consumption help to lower the risks of developing the disease.

It also advises that screening is key to early detection.

A LIFE MISSION

Medical Oncologist in Antigua and Barbuda, Dr. Hanybal Yazigi, 34, knows all too well the difference that an early discovery can make to a patient’s outcome.

When he was a teenager, his grandmother died from colon cancer after being diagnosed “late”. During the last part of the disease she was not in Antigua and he was instead “traumatised” by what he saw his mother and family go through.

Years later while studying Medicine in Cuba on scholarship, this intimate encounter initially repelled him from Oncology – the diagnosing and treating of cancer. But three weeks of exposure to the specialty during Rotations converted him away from Gynecology and Obstetrics. It is now the young doctor’s life mission to help reduce the incidence of and mortality from breast cancer and other forms of cancers in Antigua and Barbuda.

“I was very, very blown away by the actual science behind oncology, the formation of cancer, how it comes about, how malicious and how human-like cancer can be. I saw that there is actually hope, there are ways to prevent it, there are ways to screen for it,” Dr. Yagisi shares.

He became a Doctor in 2014 and a Medical Oncologist in 2018, with a focus on breast cancer.

While pursuing the specialty in Cuba, he encountered his youngest breast cancer patient to date – a 13-year-old who eventually died from the disease. The next youngest is a 21-year-old old woman diagnosed just a year and a half ago in Antigua.

“More than 50 per cent of all patients who are diagnosed with breast cancer here are already stage 3 or 4. So they’re coming very late. They’re not doing their screening. They’re not getting detected early enough,” he says shaking his head in frustration.

The cost burden of cancer is significant with the Oncologist putting the average figure of treating a patient at EC$100,000 (One EC dollar=US$0.37 cents) to EC$150,000, depending on how much chemo and treatment they need.

Cancer patients access these treatments free of charge at the hospital.

At the time of writing this feature, a study on the cost burden of cancer to the government purse was underway by the Medical Benefits Scheme, a statutory entity that offers financial assistance and pharmaceutical supplies to qualified residents. All workers in Antigua and Barbuda contribute a percentage of their salary to the Scheme each month.

Since 2021, cancer patients in Antigua and Barbuda have been going to Colombia and other countries for various aspects of their treatment due to the closure of the Eastern Caribbean Cancer Centre which operated for three years.

The government incurs the treatment costs with patients paying for their accommodation. “It has only been about a year-and-a-half so it’s too early to tell the impact of not having a cancer centre in Antigua,” says Dr. Yagisi.

He reminds women, and men to do self-examinations, and in the case of women, get a mammogram once they turn 40.

MEN HAVE BREASTS TOO

A sentiment endorsed by president of Breast Friends Antigua and Barbuda, Eunetta Bird, a 26 year survivor. Every October, for Breast Cancer Awareness month, the organisation offers free screening at the hospital.

The one-day event is always oversubscribed. This year was no different. From as early as four a.m. on Saturday 19th, women began arriving at the outpatient department ahead of the six a.m. start of registration. Those who could not be accommodated in the waiting room of the Outpatient Department spilled into the main reception area of the hospital.

Bird says all but 11 of the 218 registrants were screened. Forty-seven were referred for mammograms and other diagnostic tests that were done that same day.

Three men attended the screening. They were given the all clear.

Some of the females waiting to be screened were surprised that males turned up, but others were not because they know that men can also get breast cancer.

In fact, Dr. Yagisi has managed two male patients with this type of cancer since joining the Oncology Department at the hospital. To his knowledge both are still alive and are among the international rate of one percent to be diagnosed with breast cancer. A miniscule percentage when compared with figures for women but just as devastating mortality wise because men usually present when it is too late.

Despite similar presentation and treatment strategies of breast cancer in both sexes, men fare infamously worse, with reported five year survival rates of only 40% to 60% compared to 80% for women. Multiple studies show that this can be attributed to lack of awareness, the need for social support and embarrassment.

PRECISION CANCER CARE

The biology of breast cancer is inherently complex, so every woman’s breast cancer is unique, says the U.S-based Breast Cancer Research Foundation. It also acknowledges that while significant progress has been made in understanding the molecular drivers of the disease, most studies and clinical trials are conducted in white women. “Expanding black women’s participation in research is critical,” the Foundation advises.

Trail-blazing Bermudian Scientist Dr. Kalia Weldon is on a mission to do just that.

Through her company Carigenetics, she began the Caribbean Breast Cancer Whole Genome Pilot Study in May this year, in an attempt to identify the unique genetic markers in women of Caribbean ancestry. The research, the first of its kind in the Caribbean, will go towards providing precision medical treatment aimed at improving the outcomes for breast cancer patients in the region.

“The goal is to try to see if we can find unique differences in women, to be able to use that for more predictive screening and earlier intervention so we can have early diagnosis,” she shares.

Carigenetics recruited 50 female patients with breast cancer and 50 female controls without a history of cancer, to provide proof of principle and establish an experimental pipeline for data collection and analysis with potential to scale up to wider breast cancer cohorts in the Caribbean.

The goal is to use the findings to develop better treatments, prevention strategies, and earlier detection methods for breast cancer.

Dr. Yagisi was unaware of this study before I mentioned it to him. He perks up on hearing the news and writes the names of the lead scientists and her company so that he could research the matter.

He welcomes the study and endorses clinical trials in a population such as Antigua and Barbuda but “not at this time”.  So, he said no to the only clinical trials-offer that was made since he became a medical oncologist at the hospital.

“I didn’t feel that it was the right thing because there hasn’t been proven any benefit in one population. Why try it on our population? I think it would have put us at a disadvantage and we’re already at a disadvantage. I don’t’ think it would be in our best interest right now,” he rationalises.

EARLY DETECTION SAVES LIVES

 The objective of the WHO Global Breast Cancer Initiative is to reduce global breast cancer mortality by 2.5% per year, thereby averting 2.5 million breast cancer deaths globally between 2020 and 2040.

The WHO also wants to reduce global breast cancer mortality by 2.5% per year. This in turn would result in 25% fewer deaths from the disease by 2030 and 40% by 2040 among women under 70 years of age.

The three pillars toward achieving these objectives are: health promotion for early detection; timely diagnosis; and comprehensive breast cancer management.

Achieving these goals requires public health education to improve awareness among women of the signs and symptoms of breast cancer, according to WHO. Women along with their families must be made aware of the importance of early detection and treatment which would in turn lead to early medical consultations when the disease is suspected.

“It is possible to achieve this even in the absence of mammographic screening that is impractical in many countries at the present time,” says the WHO.

Meanwhile, progress in early detection and treatment has significantly increased the number of years lived with a diagnosis. Although survival rates differ between countries, there are an estimated 7.8 million worldwide who have survived at least five years after a diagnosis, says World Cancer Research Fund International.

As a result, there is an increasing demand for reliable, evidence-based guidance on diet and physical activity from health professionals and people living with and beyond cancer.

Remember Michele and her daughter Xavian? They have a message for everyone reading this article.“Educate yourself, have yourself checked, do your self-examinations,” advises Michelle.

As for Xavian she wants you to know that Cancer does not have to be a death sentence.

“Just overcoming that initial fear of finding out if the lump is cancerous can literally save your life. It did mine.”