What do survivors say?

We asked patients who have already been treated for oropharyngeal cancer what they would have liked to know when they were thinking about treatment. Some of their advice is below:

Everyone’s treatment experiences are different. The most frequently experienced side effect changes from person to person and week to week. It could be, for example, dry mouth, fatigue, or depression. The treatment team can help you every step of the way to deal with each challenge.

Instead of expecting to “return to normal” after the end of treatment, it is more likely that you will find a “new normal”. This is different for everyone and could include, for example, a different way of chewing, changes to taste, a difficult time with lifting heavy items due to shoulder weakness, or drinking lots of water with each meal because of a dry mouth. These side effects can be short-term, but may also last years. At the end of day, there are ways to adapt to this new normal, and survivors feel the treatment is worth the side effects.

It may be helpful to seek out a survivor group before or during treatment in order to get a better idea of what treatment is like, and to get advice on how to deal with certain aspects of treatment. Survivor groups may be held at your hospital, or can be found here.

Radiation treatment gets worse week by week, with the last week being the most difficult to tolerate.

You may need a feeding tube during treatment, and it can be uncomfortable and strange. Ask lots of questions about how to manage the tube.

About Feeding Tubes

During treatment, your doctors may recommend a feeding tube if they are worried you can’t take enough food or liquids by mouth. A feeding tube is a flexible tube that allows you to get fluids, food, and medications into your stomach. There are two types of feeding tubes.

A nasogastric tube (NG tube) is placed through the nose and goes down through the throat and into the stomach. They are placed in clinic. They are usually taped to your nose. These tubes are not permanent and can be removed in clinic..

A gastrostomy tube, G tube or PEG, is placed through the wall of the belly straight into the stomach. This can be done by either your head and neck surgeon, a radiologist, or a gastroenterologist (GI doctor) in a procedure room. Gastrostomy tubes are not permanent and can be removed in clinic..

Images from Cancer Research UK / CC BY-SA