Head and neck cancer survivors share stories of hope

There are at least 7,000 Filipinos diagnosed with HNC in a year. Although this only makes up around 4.7% of the new cancer cases in the country, HNCs continue to be a burden on Filipino families experiencing it.

Understanding head and neck cancer is one thing. To fight and survive this battle is a story of hope that Engr. Emer Rojas and Engr. Jojo Flores live to tell.

“I was diagnosed with stage 4 laryngeal cancer at 41. The only symptom I had was a sudden loss of voice. I was a chain smoker, I used to smoke two packs daily. Early detection talaga ang kailangan,” recalled Engr. Emer Rojas, National Council on Disability Affairs Executive Director, and HNC survivor.

“I was diagnosed at the age of 43. I had a sore on my tongue. I ignored it for three months until I had difficulty eating and speaking. I had a check-up and biopsy. It was stage 4 tongue cancer. I never had a single stick of cigarette. But I was a heavy drinker. Don’t take for granted early detection and prevention,” noted Engr. Jojo Flores, cancer advocate and HNC survivor.

Hope from Within (HFW), a multi-stakeholder cancer advocacy program led by MSD in the Philippines, aims to bring hope to head and neck cancer patients, from the newly diagnosed to those navigating their cancer journey as individuals who are in post-cancer treatment. Each personal story is inspiring and reflects every individual’s unique path.

“The number of HNC survivors is very small because of the late stage they were diagnosed with. But now we have more treatments available,” said Dr. Laura Pedraza, medical oncologist at St. Luke’s Medical Center.

To bring to light the challenges of HNC patients, HFW hosted Pandesal Forum: Usapang Head and Neck Cancer, a disease awareness forum in line with Head & Neck Cancer Awareness Month. A representative from the Department of Health, an oncologist from St. Luke’s Medical Center, and HNC patient ambassadors formed the panel to raise awareness about HNC and provide reliable information about its risks, symptoms, diagnosis, and treatment options.  HFW strengthens its commitment to renewing hope and reinforcing the fight for Filipino patients suffering from HNC through this event.

Understanding head & neck cancer

In general, upper aerodigestive tract cancers are called head and neck cancers. It affects the oral cavity, pharynx, larynx, nasal cavity, paranasal sinuses, and salivary glands.

There are several risk factors for this type of cancer, including smoking, tobacco chewing, and consumption of alcohol. People who smoke for an extended period have an increased risk of developing laryngeal and oropharyngeal cancer. Excessive consumption of alcohol is known to increase one’s risk of different cancers, including mouth and throat.

“Several studies show that vaping, e-cigarette, and second-hand smoking increase the risk of head and neck cancer. Some patients as young as 18 develop HNC because of these factors,” said Dr. Laura Pedraza, medical oncologist at St. Luke’s Medical Center.

Other risk factors are occupational exposure to asbestos, pesticides, and dry-cleaning agents, among other hazardous chemicals; prior radiation therapy for benign and malignant cancers; genetic factors; and Epstein-Barr virus (EBV).

Head and neck cancer can manifest physically as white or red patches on the mouth’s gums, tongue, and lining. Additionally, they may initially present as mouth ulcers that do not heal or unusual bleeding.

Other HNCs present as chronic sinus infections that do not respond to antibiotic treatments, frequent headaches and swelling or pain in the eyes, a growing mass on the mandible area or the bone that holds the lower teeth, facial numbness, ear pain, or any growth in the ear.

The presence of any of the symptoms or conditions mentioned above does not necessarily mean that you have cancer. However, early detection is crucial to address any malignancy at its earliest stage.

“In the Philippines, we have CT scans, MRI that will help patients get a diagnosis,” Dr. Pedra added. “A regular check-up with an ENT doctor to check the neck and throat area for possible malignancies.”

Living with head & neck cancer

Head and neck cancer can be traumatic and life-changing, denying those affected the ability to eat, talk and swallow, and often leaving them disfigured. They often describe debilitating grief, a refusal to look at themselves in a mirror, and reluctance to venture outside the home to live a normal life.

Engr. Flores shared that he was grateful to have completed the treatment. However, dealing with day-to-day life after surgery and therapy proved to be more challenging for him.

“Mahirap yung buhay kapag nalampasan mo na. Papaano na? Tulad ko, hirap na ko magsalita. Hindi rin ako makakain nang maayos kasi wala na kong kakayahang ngumuya. Lahat ng pagkain ko dapat na-i-blender,” he related.

“Nagkaroon ng stigma dahil sa boses ko. Wala pa kasi silang naririnig na tao na kung magsalita parang robot. Nawalan ako ng vocal chords. Gumagamit na ako ng electrolarynx  na nagkakahalaga ng halos $500-$700. Kapag umiikot ako sa mall, akala nila mascot ako ng Star Wars,” Engr. Rojas jokingly said.

Breathing, speaking, and swallowing are vital functions that may be affected. These functional impairments may negatively influence a patient’s body image. Also, appearance changes in the visible head and neck area may impact body image. Surgical treatment may cause scarring and disfiguring of the facial area, and affected facial contour, and expression, or a tracheostomy. Radiotherapy may induce swelling, fibrosis, and alterations in skin pigmentation.

Hope and support for HNC patients

For patients living with cancer, the future is often unknown, but hope is what keeps them alive to endure treatments and social and personal adversities. The National Integrated Cancer Control Act (NICCA) is a bright ray of hope for Filipino patients. Signed in February 2019 by President Rodrigo Roa Duterte, NICCA aims to strengthen cancer control in the country, increase cancer survivorship and reduce the burden on families and cancer patients.

Key provisions under NICCA include creating the Philippine Cancer Center to promote and encourage cancer research, provide training to medical professionals, and house the population-based cancer registry. It also mandated the creation of a Cancer Assistance Fund and the National Integrated Cancer Control Council. This multi-sectoral and multi-stakeholder body will act as the policy-making, planning, and coordinating body on cancer control, headed by the Secretary of Health.

A significant provision of NICCA is the issuance of PWD ID to cancer patients. Section 25 states that cancer patients and survivors are considered as PWDs. Section 26 of NICCA mandates the Department of Social Welfare and Development to ensure that HNC patients will also receive social welfare and benefits for PWDs.

“Sama sama po nating ini-implement ang ating cancer law. It’s a whole systems approach. Lahat ng stakeholders kasama sa consultation with DOH. We want to make this sustainable and long-term. Capacity building with LGUs is ongoing to equip local health workers to assist patients in getting their PWD IDs,” noted Dr. Clarito Cairo, DOH Program Manager for Cancer Prevention and Disease Control.

In addition, the Department of Health established the Cancer Assistance Fund (CAF) to support the Cancer and Supportive-Palliative Medicines Access Program (CSPMAP). Under this program, patients with HNC can receive free medicines from government-sponsored hospitals.

This provision will significantly reduce the out-of-pocket expense of patients and their families. There are 30 access centers across the country. Patients can go to any access center near them and bring their medical abstract and prescription for assessment.

Dr. Cairo also added that for 2022 budget for cancer care and support programs is covered by three funds: Public Health Management Fund, PhP 20 million pesos; Cancer Control program for medicine and given for free to patients, PhP 786 million pesos and Cancer Assistance Fund for screening, diagnostics not covered by Philhealth, PhP 529 million pesos.

“Cancer ang kalaban natin kaya kailangan nating bilisan. Nasa NICCA Law na ang lahat ng elemento na kailangan ng isang cancer patient.Kailangan ang full implementation,” urged Engr. Flores.

Support cancer patients and survivors by signing the petition on the urgent implementation of the NICCA Law, which provides benefits that are needed for their treatment and recovery while allowing them a better quality of life. Make your signature matter. Sign the petition here.  Link: https://bit.ly/3teZYct