Notes on Surviving Head and Neck Cancer: Paving the Road Ahead

Survival rates for most head and neck cancers (HNCs) have seen large statistically significant improvements. This is attributed in part to recent advances in the use of chemotherapy plus radiation and the use of hyperfractionated radiotherapy.[1] That's great news on the survival front and can be attributed to the physicians and researchers who continue to evolve HNC research and treatment. However, on this journey as a survivor, sometimes it seems that with every step forward, obstacles appear. What follows are notes divided into two parts. The first explores agency and patient-centric actions under the patient's control that may lead to better survival outcomes. The second discusses quality of life (QoL) considerations for long term HNC survivors based on my experience. Part 1. Patient agency can drive better outcomes Knowledge and outreach were enabling. While each person and their cancer is a unique medical condition, there is a growing wealth of information to help better understand your cancer. I accumulated knowledge and found key informational resources about the latest treatment approaches, medical facilities treating high numbers of specific HNCs and clinical trials. After undergoing a difficult surgery, I was diagnosed with 5 inoperable hot spots, I asked my physician what options I had. Chemo left me in bed for a year but the 5 became 1 operable cancer spot. Having learned much, I was prepared when my physician told me that the cancer will keep coming back if we don't try something out-of-the-box. My reply – what options do I have? My daughter was growing but my job as her dad was not finished. The research empowered me. My physician and I had built a trusting relationship. He listened to me and I listened to him. I became a knowledgeable advocate for myself. I became a partner in my treatment plan. My medical team found a clinical trial at another highly regarded HNC institution and modeled my treatment plan based on that trial. I was fortunate that my persistence and having a care team that listened and fought with me. My cancer never returned. I remain thankful that I continue to see my daughter grow into the amazing person she is becoming. Throughout this journey of ups and downs, I found an extended support system through social media. There I received patient-centered insights for my questions and concerns. Every question I had I took to my physician. He still listens and discusses all the options facing me. Write down your questions before your visit with the medical team. Visits can be overwhelming and by writing the questions down there is a higher likelihood they will be asked and not forgotten. Also, find the right medical team for you. For me, it was pivotal. Establishing and maintaining follow up visits. Fifty to 60% of HNC patients develop a recurrence within 2 years after initial diagnosis and treatment.[2] Establish a follow up plan and stick to it. The visits may begin quarterly and then taper off to semi-annually, and then annually. At a minimum, maintaining follow up visits, is a quality-of-life (QoL) activity, because the earlier a recurrence is detected and attended to, the better the potential outcome and quality of life for you. Maintaining oral health and nutrition. Dysphagia (difficulty swallowing) is common among HNC survivors and can be challenging. Work with a qualified medical Speech Language Pathologist (SLP) to determine a nutrition plan. This may necessitate a modified diet or a feeding tube. Feeding tubes have their place in the HNC survivorship population. Research indicates that bacteria in the oral cavity (i.e., microbiome) can sometimes lead to systemic infection, and other health related challenges.[3, 4] This further complicates what can and cannot be done safely in a compromised jawbone due to radiation. An ounce of prevention is worth more than a pound of cure. Rehabilitation was essential. Speech and swallowing deficits are common HNC survivor outcomes. A qualified medical SLP will help guide you through rehabilitation. I recommend you start this process concurrent with your treatment. A common saying one will hear is, “use it or lose it”. This applies to both speech and swallowing. Finding my “new normal.” The experience of surviving HNC changes life after treatment. For example, because your voice changes, it may be more difficult for others to understand you. You may lose your ability to be spontaneous, and for me, I couldn't tell jokes as well as before. Jokes need timing to be most effective and, well, funny. With my speech difficulties, I couldn't deliver a good punch line – but I still try. I kept activities that were important to me in both phases of my life pre- and post-HNC. I traveled then for fun, now I travel to advocate for all those surviving HNCs and swallowing disorders. Because I don't have a social eating ability due to my surgery, my social activities are a bit different or at least require more thought as my diet has changed. I can't really go out to eat, in a literal sense. To be part of social dining experience, I may move the food around on the plate (like a little kid who doesn't want to eat his peas) so that the wait staff doesn't come over and ask, is everything alright with your meal? One's “new normal” may change over time. Whatever changes you face, understand there is a cost to survivorship and accept them. You are not giving up. You are continuing to fight with your dignity, awareness, knowledge and your treatment plan. Adapting to your new circumstances gives you power over what seems at times uncontrollable. Part II. Quality-of Life (QOL) as a survivor Post-traumatic stress. HNC treatment can be traumatic. I was convinced that I was suffocating when removed from the ventilator following my salvage surgery (Briefly, my salvage surgery involved removal of the primary tumor at the base of my tongue, my left lingual nerve ran right through my tumor necessitating the severing of that nerve. My left jawbone and 4 perfectly good teeth were surgically removed and replaced by my tibia bone from my right leg, a skin graft from my right upper thigh was used to repair the tissue from where my tibia was removed. A titanium plate was inserted from my earlobe to my chin to support my jaw's reconstruction. This was a 12-hour surgery). This sensation lasted on and off for 5 days. Recently, when the thought of how a COVID-19 infection could potentially affect my respiratory system, memories of suffocation came rushing back 14 years after the salvage surgery. Seek appropriate mental health support, because surviving HNC leaves a trail of tears in your mind and body, often resulting in some type of PTSD.[5] Aspiration pneumonia awareness. This is common among HNC survivors.[6] Onset can vary. Mine happened 5 years after my treatment stopped and I can pinpoint the moment it happened. Everyone aspirates, it's all a matter of degree, frequency, and your overall health. My aspiration pneumonia crept up on me to the point where I was very weak and became hospitalized. Social isolation and other changes. As mentioned earlier, speech and swallowing may become compromised. These were functions that I took for granted. Imagine not being able to eat or communicate verbally in social situations. This will change how you live your life and what you enjoy. I chose to recognize and accept with conviction this new reality, because just maybe, this bittersweet adversity might create opportunities to discover new joys. Swallowing Disorders (dysphagia). As the volunteer president of the National Foundation of Swallowing Disorders for over a decade I have a lot of contact with those experiencing dysphagia. Many are HNC survivors requiring validating diagnosis.[7] The number of times I've heard other patients say their healthcare provider says it is all in their head is disheartening. If you encounter this, and I hope you don't, challenge your medical team to recognize this is real and needs to be addressed. If not, find a new healthcare provider! Aging versus treatment effects. With aging as an HNC survivor, there may be biological changes that impact treatment outcomes and QoL.[8, 9] Unfortunately, it can be difficult to differentiate age-related effects from treatment-related effects. Consult your medical team with changes that seem unusual. This could be your primary cancer physician, the dental oncology experts, a qualified SLP, a geriatrician offering a comprehensive geriatric assessment (CGA), and, always, seek mental health support Neurotoxic effects. This is another common symptom of HNC patients.[10] A peculiar historical irony is that much of chemotherapy was born out of observations in the World Wars I/II, with the observation of nitrogen mustard exposure exhibiting effects on certain cancers [11, 12] . It's not surprising that there are off-target effects and drawbacks to certain chemotherapeutic agents. Neuropathy (tingling and numbness often of your limbs or face) may be one of them. Another neurotoxic symptom of cancer therapy can be cognitive impairment. This brain fog may be long or short lasting. With either symptom, please seek medical help to track the severity. While treatment options are few, research in this area is a priority. Pain management. A good pain management specialist is invaluable. In some cases, opiates may be the best option. This has become more controversial with the opioid crisis. Other options to mitigate pain are an active area of research.[13, 14] In closing, while there have been advances in HNC treatment and cancer, the road ahead for survivors needs to be paved with efforts that improve QoL. The Cancer Neuroscience symposium and special issue in November 2022 that I was part of was an important step in that journey, but the road to pave still lies ahead and must be taken. I remain grateful to my integrated HNC team of dedicated medical and research professionals at the University of Texas M D Anderson Cancer Center. They listened to my wishes and gave me the gift of life… 18 years of watching my daughter grow up. 18 years of travels to see the world. 18 years and counting to speak for many HNC survivors. The authors declare no conflict of interest.