Julie's story: Head and neck cancer
In the previous video, we looked at the process of radiation therapy for head and neck cancers. Read Julie McCrossin’s story of her experience of radiation therapy treatment for oropharageal cancer.
I was diagnosed with stage 4 oropharyngeal cancer in mid 2013. I had cancer in my tonsils, the back of my tongue and the side of my throat.
Prior to diagnosis I had been repeatedly attending my GP (family doctor) complaining of an ear ache, a sore throat and two lumps on my neck. I was taking soluble pain relief twice a day but I wasn’t sick. I was never referred by my GP (family doctor) for any tests or assessment by a specialist.
Finally, I wrote to an ear, nose and throat surgeon who I had previously seen about another health issue. I wrote to him about my symptoms and he agreed to see me. He immediately diagnosed my cancer and confirmed the diagnosis with a biopsy the next day.
I was successfully treated with 30 sessions of radiation and four sessions of chemotherapy.
Cause of cancer - Human Papillomavirus (HPV)
My cancer was caused by HPV, the Human Papillomavirus. While tobacco and alcohol are the primary causes of head and neck cancers, an increasing number of people are developing cancer as the result of this sexually-transmitted virus. Thankfully most Australian boys and girls are now receiving the HPV vaccine at school at the ages of 12 or 13. However, there are still many older people, like myself, who missed out on the vaccine.
Without exception, my wide circle of friends were absolutely astonished that I had throat cancer. I had not smoked or drunk alcohol since 1979.
No-one, including myself, was aware that HPV could cause head and neck cancers, as well as cervical cancer. Nor did they know HPV can cause cancer in the penis and anus.
Treatment and recovery
My recovery was based on two key factors in addition to the excellent treatment, pain relief and hope provided by my medical team: a radiation oncologist, a medical oncologist and a head and neck surgeon.
Support from family and friends
Firstly, I was lucky to have a loving, supportive, long-term partner, Melissa and two caring adult step-children, Luke and Amelia. We had a tight circle of very helpful, practical friends. My partner was able to take paid and unpaid leave from work and devote herself to my care. We had savings which were also crucial in enabling her to care for me. The children provided significant practical and emotional support.
Amelia was a medical student at the time and she helped us read the materials from Cancer Council NSW and write down useful questions for the doctors.
Copyright Julie McCrossin
Support from multidisciplinary team
Secondly, I had the support of a multidisciplinary team. My speech pathologist and dietician kept me eating, swallowing and speaking for as long as possible. I did lose the capacity to speak for about eight weeks. However, I worked with a speech pathologist throughout my treatment and for several months after treatment to recover my voice and my capacity to swallow.
During treatment and its immediate aftermath, I lost 20kg. However, I was able to maintain a safe weight without PEG or nasogastric tube feeding. Often tube feeding is necessary. However, I was overweight to start, which helped, and I was highly motivated to keep swallowing food supplements as well as soft foods.
I had two crucial nurses who made sure I understood what was happening and who helped me solve any problems as they arose by connecting me to the right team member quickly.
The radiation therapists kept me safe during my treatment in the bunker of the linear accelerator.
The challenge of the mask
However, I did have one significant concern. I don’t feel I was adequately prepared for the challenge of the mask. It is an essential safety device but I found it a very challenging experience.
I asked for help from the nurse in my bunker after four sessions. I immediately got help.
I began to take mild sedation before each session. I listened to the same four songs which helped me know how long the session would last and it soothed me. The nurse held my hand while my mask was put on for two or three sessions as I adjusted to the experience. I also began to see a clinical psychologist and she gave me useful things to think about to calm me. All of this helped me and I did not miss any sessions, despite my initial distress.
Monitoring and checking
Once my radiation treatment and chemotherapy were completed, I began a new relationship with my two main doctors: my radiation oncologist and my surgeon. I have been seeing one or other of them every three months for various tests. They also examined me physically. They felt all around my neck and put a tube with a camera down my nose into the lower part of my throat. You cannot see this area through the mouth. They checked to see if any cancer has come back. I can see these images on a screen in my surgeon’s rooms.
I have seen the large, lumpy cancer tumour inside me and I have seen the clean, smooth healthy tissue after treatment.
I continue to see my surgeon at regular intervals. My radiation oncologist has retired. When I heard he was gone, it felt like a loss in my family.
Cancer is a team sport and you get very close to your team members.
Patient education and support
It is now four and a half years since I was diagnosed. I recently had a PET scan that confirmed I am still cancer free. I have found that getting involved in patient education activities has helped me to recover emotionally from the frightening experience of having a life-threatening illness.
Thinking about Julie’s experience
- What do you think were the most challenging parts of her treatment?
- How did she overcome these challenges?
© Trinity College Dublin