What is impressive about online support groups is how their patient experience can cheer new oropharyngeal patients on.

Of all the types of head and neck cancer, oropharyngeal cancer is turning out to be the most common in new members to our Facebook group.

Oropharyngeal cancer is commonly called throat cancer and is usually HPV-related. The treatments are tough, but the cure rates are very good even though it is often diagnosed at a late stage.

I had cancer of the oral cavity, so have observed these OPC cancers at a distance. I’m struck by the tunnel of pain these patients go through, the excellent support they get from radiation centres to endure the 6 – 7 weeks of treatment, and the way a good proportion can go back to their normal lives, mentally and physically battered but with a lot less loss of function than I have experienced. 

I am very sorry for those who do not escape severe side effects and recurrences. And those who were treated 20 years of so ago have far worse long-term consequences.

No matter how good the treatment team, it takes a fellow patient to know what it feels like. I have been impressed by recent comments of patients cheering other patients on. 

• I was treated with radiation therapy and chemo for stage 4 oropharyngeal cancer – tonsils, tongue & throat – in 2013. It is a tough treatment, but I am alive & happy.
• I was told if you’re going to get cancer it’s the best one to get as it’s treatable. It’s going to be horrible but it’s not terrible.
• Had something similar on my tongue 13 years ago. Not necessarily the end of life, just the end of what’s been. The side effects of radiation do get painful, but the pain of the cancer was bad too.
• I had the same diagnosis as you: base of tongue. The treatments are a challenge, there is no doubt about that. Life is not the same as before the storm but there isn’t a day that I wished I hadn’t done the treatments.
• We found the Cancer Society helpful. They have knowledgeable caring support workers who will come and visit you, and explain the diagnosis and medical terminology, and help you navigate through the hospital system. We were so out of our depth post diagnosis; the cancer support worker was invaluable. They also let you know of benefits you are entitled to such as travel allowances, counsellors, rehab programs and they can get the ball rolling for you.
• So, two years post treatment I am still here, I was battered and bruised for a while, have increased deafness and some tinnitus and dry mouth. Was it all worth it? Sure was, especially when I got to meet my latest grandchild last year.
• It was a very difficult few months with complications and an ICU stay but within six months I was back at work full time, my taste back to nearly full (it’s completely back now) and eight years on I’m still here with very minimal side effects
• It’s a shit-sandwich that is for sure. And you cannot do it on your own. Reach out to get the help you need. You will be amazed what resilience we have as humans when it hits the fan.
• I was heartened by the ENT specialist’s advice that while the treatment was arduous there were good recovery statistics. I finished my radiation (33 doses) and chemo (7 cycles) in late September. I had about two weeks of feeling lousy and then gradually started to feel better and better.
• Life is different to before. I cannot eat a lot of the things I used to enjoy (due to swallowing difficulties) but I am enjoying a far healthier diet and am able to enjoy a beer and a glass of wine on occasion. I was worried about a loss of quality of life but have not regretted the fact that I went with the medically recommended treatment.