“I was Diagnosed with Breast Cancer in March 2020 just as COVID-19 began sweeping the world and our island”—- First Lady Prof. Maithree Wickramasinghe talks about her experience with Cancer for the First time at a Public Event

(Full Text of keynote address by First Lady Prof. Maithree Wickramasinghe delivered at the Breast Cancer Symposium 2023 on the theme ‘Empowering Hope, Uniting Hearts and Advancing Minds’ organized by the Indira Cancer Trust on Friday,13 October 2023)

I consider it a distinctive privilege to be here this morning, (though not necessarily to be dressed in pink even though it is the custom for those campaigning for breast cancer awareness), but to be here, to articulate my views on breast cancer – stemming not only from my research on the topic but also from my personal experience of being a cancer patient.

I would like to thank Dr Lanka Jayasuriya-Dissanayake and her team as well as the diverse assemblage of stakeholders present here this morning for organizing the event and for their immeasurable and invaluable work in the aetiology, epidemiology, prevention, early detection, diagnosis, treatment, supportive/palliative care and awareness-raising relating to the disease.

In particular, I would like to express my heartfelt appreciation for the Indira Trust Fund for their foresight, motivation, and commitment to offering opportunities for the support, respite (even relief) of cancer patients undergoing treatment – especially, children.

I gather that the aim of the forum today is twofold. One – to take forward the conversation between and amongst multi-stakeholders in developing substantive initiatives to support the early detection. Two – to initiate and promote a national programme for the early detection of breast cancer.

And it is with this second objective in mind that I conceptualised this speech. Consequently, I would like to focus on the cultural and psychological factors, and social conditions that could deter the early detection of breast cancer – and contemplate on ways and means of negotiating these constraints – predominantly from experiential evidence.

In the year 2020, of the total number of cancers diagnosed in women, 25.7% were diagnosed with cancer in their breast. This translated to 3,975 new cases of breast cancer that year. And I was one of these ‘cases’ – detected during the month of March to be precise – just as COVID-19 began sweeping the world and our island went into lockdown. The clinical diagnosis was a Stage I HER2 carcinoma of the right breast. And I was in the 4.2% of all Stage 1 island-wide breast cancers diagnosed in 2020. This was an aggressive cancer and one reason for my presence here today was the early detection of the disease.

On the seventh day of being confined to the house, my hand brushed against my right breast while doing my yoga exercises – purely by accident. And I remember that: It is a perfect marble head, an unyielding glass globule, with endless crystal tints, intriguing to my touch, budding a tactile tadpole tail as I watch and wait and return again and again to feel this cancer, nascent in my breast.
As a young woman, I had visited my general physician and oncologist several times and even undergone a scan due to the presence of benign breast lumps. Once it was recognised that my breasts were fibrocystic with accompanying heaviness and soreness corresponding with my menstrual cycle, I stopped paying attention to my breasts over the next few decades.

My generation of women were never encouraged to be self-aware of our bodies, let alone our mammary glands. In fact, as young girls at puberty, we were discouraged from familiarizing ourselves with our bodies (neither by vision nor touch, nor even speech) in public. Our educators in school (whether in the health class or the science class) had glossed over the reproductive system – consequently, our knowledge was confined to diagrams of black-and-white drawings of pectoral muscles, lobules and ducts when it came to the anatomy of the breast. Remember, this was an era when you could not acquire, clarify or confirm knowledge instantaneously with your fingertips.
It is the education system in Sri Lanka, if not at primary level, then at the secondary strata, that needs to be the first entry point – in the prevention or detection of disease.

An international research study of electronic databases relating to health
literacy in schools conducted in 2021, recommends that school-based interventions adopt comprehensive, integrative approaches to health promotion – which target not only the school environment via changes to the curricula, but informal initiatives that address an individual’s attitudes and behaviours as well (Smith et al, 2021). Thus the integration of health literacy into school curricula should be addressed from an early age onwards to empower children to develop their full health potential – for the benefit of themselves and their families.

Moreover, visual and tactile and verbal familiarisation of one’s body (including awareness of the breasts) needs to be encouraged in schools(if not in the family) for both girls and boys, to ensure that girl children, in particular, are not made to feel shame, fear or revulsion – vis-à-vis their reproductive organs that they are not made to feel alienated from various parts of their anatomy.

Looking back, my background and lifestyle had several patent risk factors for cancer. At the time of diagnosis: I was postmenopausal;
I was in my mid-50s; I had a personal history of fibrocystic breasts;I had not breastfed, nor borne children during my reproductive years; there was cancer and cancer-related deaths in my maternal as well as paternal family (even though it has been established that the HER2 gene cannot be inherited or passed on).
Why then, was I not sentient to the possibility or rather, the probability of cancer in my body? Why did I not continue with regular checks?

After all, our country still maintains a free healthcare system – for what it’s worth. Moreover, I am adequately privileged to be able to get private medical care, to visit a well-woman’s clinic at one of the private hospitals. In fact, it is somewhat embarrassing to confess that I had not had a mammogram done until my diagnosis. Why?
Let me put it this way: After the diagnosis of a carcinoma in my breast, a friend appeased me, why you? But then it occurred to me, why not me?

Fairly unappreciated, my life had vacillated: from the humble to the sublime, from the intellectual to the aesthetic, from the global to the spiritual, and to the mundane and the ridiculous; amidst the congestion of living. Back then, I never inquired why me?

An early detection campaign, then, needs to penetrate the complacency in our lives. Our preoccupation or the congestion in our lives, day in day out; deadline by deadline; the busyness; the intensity and acceleration of life as we grow older; even the laziness; and the importance of everything else – other than vigilance of one’s personal health.

Not only did my experience, highlight the need for regular self-examinations of one’s breasts, as a personal practice, but it also underscored the need for compulsory clinical examinations on the part of our free healthcare service for women – from their 30s onwards and particularly after menopause.

Of course, there are some individuals who are obsessed with illness and death. But like a majority of you, I had, until then, discounted the only certainty in life – death. Certainly, there seems to be a certain arrogance in that denial of death. Research into the topic show that death-denial has been empirically studied for over 30 years and a recent experimental study in Israel found that the human mind has an automatic tendency to avoid awareness of its mortality. The experiment constituted of researchers observing the brain activity of volunteers who were shown images of a series of faces appearing on a screen.

Amongst these were repeated images of one person’s face positioned beneath words related to death (such as “coffin”, “grave” and “funeral”).

When a new face was shown alongside the death-related words, the volunteers’ brains generated signals that indicated surprise.
In the second phase of the experiment, volunteers were exposed to their own faces beneath words associated with death. Yet, surprisingly, their brains did not register any changes that signalled surprise; leading researchers to conclude that the prediction system in their brains did not function. This seems to indicate that the human brain shields itself from existential threats; in that, it does not appear to engage with the idea of its own death; apparently, by shutting down predictions about the self or by categorizing the information as being about other people.

Perhaps, this explains why so many individuals are unable to psychologically engage with the possibility of terminal disease or fatal risk – in the abstract.

On the other hand, after the diagnosis of a terminal illness – patients are compelled to confront our own mortality – at some point or the other. At which point, those who have spiritual faith turn to religion; others look for self-help manuals; some engage in creativity; yet others, subscribe to meditative practices – all in order to mitigate death.

For me, what became of import, was the cultivation of the capacity to relate to death head-on; to accept death as a fact of life – at its simplest – as discussed by philosophers from the Gauthama Buddha, to the Greek Epicurus to Martin Heidegger, to the Dalai Lama. My strategy then, was to accept death – alongside the possibility of life. I believe this to have been critical for psychological recovery – and also important when creating awareness about cancer.

Conceptualising of diseases ‘as battles to be overcome’ was highly problematic for me. In fact, it used to really annoy me when people, well-meaning as they were, told me to fight; to see the cancer as a marauding invader; the illness as a war to be won! A cankerous alien to be killed!

Perhaps, due to my professional links to the discipline of English, I may have been overly-sensitive to these combative metaphors – even though they were simply ones of encouragement. My central objection being that one should not go to war with one’s own body. After all, the carcinoma was also a part of my body.

No doubt this confrontational modus operandi can be useful for some patients in conceptualising cancer and “overcoming” the illness – however, I saw it as a misuse of energy (at a time when there were so many issues to deal with) – Of course, the ongoing treatment – I had two surgeries, 8 cycles of chemotherapy, 20 days of radiation and another 9 rounds of targeted chemo – lasting 17 months in toto.

Then, the emotional baggage vis-à-vis family and friends, the fear of death, the uncertainty of life; the intensity of living on a day-to-day basis; the estrangement from others due to one’s suffering; the lapses into self-pity, victimhood, depression; and so on…It was therefore more important to me to accept the infirmity and limitations of the self; to accept the possibilities of life and death in equal measure; but at the same time, to prepare for the eventual inevitability of death – at some point or the other.

Moreover, in my case as with others who dealt with the disease at the time – we had to deal with other dimensions of reality as well.

Action stopped
Time prevailed
Persisted ….
Space collapsed
Congealed ….
Place bound
Bolted ….
In stasis,
Life or Death?

You may be wondering why I am focusing so much on death? As you know, the historical notoriety of the disease and the inadequacy of updated information, makes it necessary to address the common belief that cancer is symbiotic of death – when campaigning for early detection.

Oncologists testify to the practice of individuals-suspecting-cancer procrastinating – not seeking medical advice, possibly due to fears of diagnosis and prognosis as well as the harsh treatment involved. Of course, cancer survivors and survival statistics can speak to the contrary.

Consequently, there is a need to demystify cancer and its outcomes.
To treat it as a routine disease in general – that could have a good prognosis after treatment.

Then, there is the need to normalise treatment – by creating public awareness about the different types of cancers, especially the different categories of breast cancer and the different kinds of treatment options; again, to communicate that not only does cancer not equate death; but that it does not always necessitate the ‘dreaded’ chemotherapy; furthermore, to make it common knowledge that there are different categories and generations of chemotherapy; and that the impact of chemotherapy on the mind and the body of an individual can be markedly dissimilar; moreover, of the diverse methods (both allopathic and holistic) of alleviating and mitigating the impact of chemotherapy, if necessary.

In this sense, we need to highlight the more positive, if not balanced narratives of women’s and men’s experiences of chemotherapy – alongside the negative. For instance, you may be surprised to hear that apart from the discomforts of treatment, this was a very rewarding and soothing time in my life.

For the first time in our marriage my husband and I spent extended periods of time together; family, friends, relatives, students, acquaintances, even adversaries – all got in touch to express their love and friendship. They found ways to send food and gifts – despite the lockdown. After many decades, I was not working – I was emancipated – I had the freedom – to be – to read, write poetry, watch unlimited TV series, listen to compendiums of YouTube music, to lounge around, to sleep late in the mornings ….

It would be remiss of me, if I do not comment on the social stigma attached to cancer in this country – that need to be accounted for in campaigning for early detection. Anecdotal evidence indicates that potential cancer patients are also inclined to deny or defer a formal diagnosis due to their reluctance to be identified as ‘diseased’ or as ‘victims’ or as ‘imperfect’. They also tend to refute the linkage between symptoms and cancer – due to the anxiety of its possible impact, for instance, on employment or marital or financial prospects or due to the emotional costs to the family.

Of course, exhibiting the epidemiology of breast cancer in meaningful ways in attempts to penetrate the psychological death-denying mechanism of the average person would be important. Likewise, it can be assumed that normalising the growing incidence of breast cancer as well as statistics of remission would serve to negate these cultural fears and perceptions to some extent.

Before I conclude, I would like to raise one more point that has impinged upon my consciousness with regard to the disease in recent times. While early detection is critical for a good prognosis, there is a risk that the pressure and enthusiasm for an early diagnosis could lead to the misdiagnosis and over-diagnosis of cancer in Sri Lanka. This is because an accurate diagnosis could be compromised due to benign conditions which mimic cancer and vice versa.

This could be for a number of reasons: the lack of a formal referral mechanism for the diagnosis of cancer and systematic evaluation by a panel of pathologists; a shortage of testing facilities – for immunohistochemical staining or molecular pathological diagnosis
Misdiagnosing a benign condition as malignant will result in needless, expensive treatment with potentially serious side effects (perhaps evenfatal) whilst mistaking a malignancy as a benign condition will result in the spread of cancer culminating in death.

Courtesy:Sunday Times