Getting back to normal life for head and neck cancer survivors

Head and neck cancers can be very unforgiving, with the cure sometimes more dreadful than the disease itself. This is as a result of the severe physical, functional and emotional, not to forget financial, hardship it brings to patients, especially in low- and middle-income countries. Often, due to a lack of awareness amongst both the medical fraternity and patients alike, these patients feel powerless to address these disabilities. They ‘survive’ the disease, but are unable to cope with the aftermath of cancer care. Daily ‘taken for granted’ actions, like speaking, swallowing, chewing and drinking, suddenly become an ordeal.

In my country, India, tobacco causes more than 80 percent of head and neck cancer, with an annual incidence of over 250,000, and leaving behind almost a million survivors every single year.

It affects people in the most productive age. Hence, the healthcare system needs to ensure that such patients are rehabilitated and reintegrated into society. To make more people aware of these facts and to trigger national action against head and neck cancer, we observe Head and Neck Cancer Day each year on 27 July.

Head and neck prosthetic reconstruction: a path to restore normality

Most cancer patients feel that, once they survive cancer, their treatment is complete. They are not aware that reconstruction and rehab are possible. This is probably due to a lack of awareness about the scope of prosthetics and rehabilitation amongst the public and medical profession alike. Patients accept physical facial defects and lack of optimal function with a fatalistic attitude. While survival is considered a luxury by most patients, little do they know that they can enjoy an optimal quality of life post-cancer treatment if they get rehabilitated on time.

On this World Head and Neck Cancer Day, I would like to raise awareness on rehabilitation possibilities by sharing the story of one of my patients. 45-year-old Swapnali (name changed) was refusing a surgery on her upper jaw for oral cancer as she had seen someone with a feeding tube through the nose as the only way to eat food for life. She was unaware of the advances in prosthetics and the possibility of fabricating an artificial palate that would eliminate the requirement of the feeding tube completely. However, following counseling for rehabilitation with supporting case studies of other patients treated, Swapnali not only underwent the surgery and ensuing radiotherapy for cancer cure, but she also got an artificial palate (obturator) made for her mouth. This not only ensured optimal speech, chewing and facial aesthetics, but also enabled her to continue her profession as a teacher in high school, without her students coming to know of her oral defect.

A team comprised of complementing specialties - a maxillofacial prosthodontist, nutritionist, speech and language pathologist and psychologist - ensured that every aspect of side effects arising from cancer care were adequately addressed, allowing her to maintain her quality of life. Timely prosthetics could reconstruct the lost body part of the face and restore optimal function, aesthetics and self-esteem. Swapnali, as the sole earning member in the family, found that prosthetics rehabilitated not only her quality of life, but that of her entire family - such was the impact!

Today, the goals of reconstruction go beyond defect closure, to ensure chewing, speech and aesthetics. Reconstructive surgeons can plan their reconstruction, along with the maxillofacial prosthodontists, using cutting edge technology, like virtual planning with softwares, 3D models and surgical guides.

Prevention, early diagnosis and rehabilitation have so far been playing second fiddle to ‘cure’. Early diagnosis leads to smaller defects during surgery, improving survival rate and also ensuring a successful prosthetic reconstruction and rehabilitation. Cancer care needs to be holistic and patient-centric, addressing every aspect of each patient’s problems. Recognising this importance, the World Health Organization (WHO) integrated rehabilitation into the continuum of care in February 2017.

There are thousands of patients like Swapnali who deserve multidisciplinary care, but not all are aware about it and not all have access to it either. Awareness about prosthetic reconstruction and rehabilitation is scant but increasing.

It is the collective responsibility of the medical profession and public alike to ensure that cancer patients retain their dignity with timely rehabilitation and an optimal quality of life.

The goal of cancer care was always cure. In the past, cure ended with survival; today cure does not end till the patient is completely rehabilitated. World Head and Neck Cancer Day is a key opportunity to raise awareness on the crucial role played by rehabilitation in the cancer care continuum.

Acknowledgement

The author acknowledges the support of the Union for International Cancer Control (UICC), International Society for Maxillofacial Rehabilitation (ISMR) and Indian Prosthodontic Society (IPS) for development of head and neck cancer rehabilitation in India.