Eliminating the Burden of Cervical Cancer

Written by Dr Robert O’Connor, Director of Research & Yvonne O’Meara, Psychotherapist, Irish Cancer Society

Each year over three hundred women are diagnosed with cervical cancer, and those living with and beyond extend into their thousands. Globally and nationally, attention about this malignancy has increased in recent years. Buoyed by the recognition that the advent of vaccination and HPV testing means that cervical cancer is increasingly preventable, ambitious targets have been set by international health and policy organisations such as the EU parliament and WHO. However, truly eliminating the burden of cervical cancer will require a broader range of action by us all over multiple decades. In line with the agreed pillars of this strategy, we can group the needs and opportunities for a comprehensive burden elimination strategy into the three areas: vaccination, screening, and treatment and care.

Vaccination

Almost all squamous cell cervical cancers are directly caused by one of approximately a dozen HPV virus strains, HPV-16 being particularly carcinogenic and accounting for 50% of that burden alone, with other factors such as smoking amplifying that risk. Safe and effective vaccines have been widely available now for more than a decade and are already causing a precipitous fall in pre-cancer and early cancer rates among high uptake populations.

Asymptomatic HPV infections are common when young people first become sexually active, and the vaccine works when immunity is established prior to such exposure, hence the vital importance of a national programme for vaccination of young people which establishes that protection. We are fortunate in Ireland that the HPV vaccine is delivered for free through the national schools vaccination programme, and all teenagers in first year are eligible. With compulsory involvement among schools, a school-based programme boosts equity of access. Males too get HPV-caused cancers and can transmit to their partners, so our gender-neutral scheme is also a major aid to reducing community levels of HPV, thereby preventing six types of cancer including cervical.

Valiant efforts by parents, schools and the National Immunisation Office have kept HPV vaccination levels high, but there is no question that COVID has impacted uptake rates in several ways. At a cost of approximately ¤800, missing the free programme likely puts later access out of the reach of many young people. Hence, a national catch up is strongly indicated now. Vaccine hesitancy is not going away, and maintaining high uptake will require an ongoing multiannual effort to educate parents as their children come to the relevant age and ‘immunise’ them with facts against emotive and highly targeted misinformation and disinformation.

In the fantastically multicultural community of modern Ireland, these efforts will also need to be communicated through means more suitable to the information sources commonly used by discreet communities, bearing in mind that some in society have significant reason to question state authorities based on historical and legacy challenges from their country of origin. There are also emerging indications that vaccination of older women, especially those immediately being treated for HPV-caused cervical cell abnormalities, may greatly reduce the chances of recurrence and later cancer risk.

Screening

Screening has been hugely successful at bringing down the levels of cervical cancer in this country, with rates more than half those seen prior to the introduction of a national testing programme. However, cervical pre-cancer and cancer remains all too common. With over 7,000 women needing intervention to prevent the emergence of cervical cancer annually, this translates to an approximate 1 in 10 lifetime risk of cervical pre-cancer treatment which has a health burden in its own right, with just less than a 1 in 100 lifetime risk of a cancer diagnosis, and a 3 in 1000 risk of cervical cancer death.

The successful transition of that programme to HPV-based testing will more sensitively and accurately identify those in need of intervention before cancer emerges, however there will still be challenges to reap the full benefits of such testing. While effective for many, the current administration of an uncomfortable test by a third party can be a significant hurdle for some people with a cervix, or the many in our community who have sadly been exposed to sexual trauma. Screening rates can also be lower in underprivileged communities facing challenges with healthcare access.

A vastly disproportionate burden of cervical cancer is found among those who cannot make use of the screening currently available. There are now strong indications that the use of an adjunct of HPV-based self-sampling may open up even wider access to prevention and early detection by such individuals.

The effectiveness of screening will continue to rely heavily on maintaining high colposcopy standards, and this will be challenged initially by increased demand driven by HPV positivity, and then declining demand as the impact of vaccination and HPV detection reduces positivity rates.

Despite all that we know about the symptoms of cervical cancer, it is clear that educational, communication and access hurdles remain, and continued progress will require ongoing education of the public and professionals as to warning signs and ready and rapid access for women to compassionate symptom assessment.

Treatment and care

The need for improvements in treatment and care often gets least attention in the conversation around cervical cancer. Management of this cancer may be through surgery, radiotherapy, or chemotherapy or a combination of these. Short and long-term side effects are an inevitable component in each patient’s care pathway. New treatments and combinations of treatment are gradually pushing up survival and giving hope to those impacted, but these often come at a devastating cost.

Patients can be left with a variety of life-changing side effects including chronic sexual dysfunction, lymphoedema, infertility, treatment-induced menopause, and gastrointestinal and urinary toxicity from radiotherapy, among others.

Cervical cancer patients have been found to have worse quality of life scores when compared to the general population and other gynaecological cancer survivors.

Many patients receive multiple treatment modalities, each with its own long-term effects. Given the high five-year survival for cervical cancer, evaluation, and improvement of long-term quality of life are essential. Due to the physical location of cervical cancer, it can be embarrassing and more challenging for women to talk about these side effect to their treating teams. Often, these women suffer in silence, unsure how to manage these side effects. Some of these can be easily addressed if they are spoken about and normalised during a patient consultation. The most obvious of these is vaginal dryness.

Ignorance of the personal and relationship burdens of cervical cancer treatment has left many suffering devastating consequences, often in lonely isolation. This was one of the drivers behind the Irish Cancer Society establishing its Women’s Health Initiative, a programme established in Cork and Dublin and now extending to Galway researching the best way to provide state-of-the-art customised interventions to assist women to manage and overcome the impacts of cancer treatment, especially in cervical cancer.

The Irish Cancer Society’s Women’s Health Initiative research programme has taken great strides in addressing the needs of such women.

ThisisGO.ie

Donal Brennan, Professor of Gynaecological Oncology in UCD who leads the Dublin arm of the programme, has along with his team designed, populated, and launched an online resource addressing the needs of these women, their partners and health care professionals supporting them. This web-based virtual platform is called www.thisisGO.ie.

The idea is quite simple. Users create a personalised profile and get information tailored to their situation, with information provided on their disease site, stage and treatment modalities received.

Phase one of www.thisisGO. ie focused on cervical cancer and has received universal praise from patients and health care professionals. It has been designed as a safe online space where women and their families can access accurate, reliable, evidence-based information about their cancer, treatment options, long and short-term complications, psychological and social issues.

The importance of Patient and Public Involvement, or PPI, is fundamental to improving quality of life for these women. www.thisisGO.ie has been developed as an institutionally neutral platform with extensive voluntary input from PPI and health care professionals throughout Ireland. The scope of the information available is vast. There is a very useful symptom tracker for patients as well as a detailed service directory which allows women access local supports in all areas of the country. It also contains practical articles on topics such as ‘How to talk to children about cancer’, death and dying, vulvovaginal health, diet and exercise, lymphoedema management, decoding the science, and menopause, to mention some of the most commonly searched topics. People using the platform will find it useful right across the disease trajectory from diagnosis to treatment, through to living well with and beyond cancer. Equally, the platform is designed to be of use to professionals working in the field, with relevant information shared through a hybrid approach of papers, videos and podcasts.

Articles on subjects including breaking bad news and how to take a psychosexual history are particularly relevant to professionals working directly in oncology, but also to those who may not be. A phase two of the platform focusing on the ovarian cancer was also recently launched to coincide with World Cancer Day in February, with further content set to be added on other gynaecological conditions throughout the course of 2022.

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