Some facts about loss of taste after (chemo)radiation

This is a taste bud on the tongue. The little hairs (microvilli) are receptors and the nerve takes the taste to the brain.

1. Its formal name is dysgeusia. 90% of patients experience taste loss after a couple of weeks, and while taste function typically recovers, it can take months or years
2. Taste comes from taste buds mainly on the tongue but also in other parts of the mouth and throat – we often refer to someone with a fine sense of taste as having a good “palate”. (Although there are taste buds on the palate, most are on the tongue.)
3. There are five basic tastes: bitter, sweet, sour, salty and umani (savoury)
4. We used to think these categories of taste matched different parts of the tongue but not now.
5. Taste buds are continually growing, dying, replacing themselves in about 2-week cycles. Taste loss is likely due to interruption in delivery of new taste-cells combined with continuing natural taste-cell loss.
6. Lack of saliva can affect taste too.
7. The sense of smell also affects taste.

What is the patient experience of taste loss?

1. People describe things as “tasting like cardboard”.
2. The return of taste varies in our group from about 10 days to two years. Sadly, there are two people for whom taste has not returned. Doctors say taste should return after 4 months and after a year it is unlikely to return but a small number of patients say two years. See graph below
3. Of course, there would be many variables like type of surgery if any, where in the head and neck you were radiated, whether you had chemo with radiotherapy or not.
4. Eating can become an onerous duty when there’s no taste.
5. Few people say they have 100% taste back. There’s often at least a slight change like an intolerance for red wine or an unexpected dislike of chocolate.
6. Texture is part of the pleasure in food too but here we are looking at taste alone.
7. Hot spicy acidic foods are a no for a few people long term.

What was it like to get taste back?

1. “You won’t believe this: Raspberry flavoured Panadol syrup.”
2. “Chocolate milk after ten days. A shock and a thrill after about five weeks of cardboard.”
3. Invercargill member: “Sister gave me a dozen and a half oysters. Needless to say, I enjoyed every one of them.”
4. “I remember tasting slow cooked lamb. Tofu was a really lovely dish in the early days.”
5. “Fortisip and it tasted disgustingly sweet.”
6. “Vegemite and tomato on a cracker with pepper.”

Other comments about taste

1. “I remember having a banana smoothie after treatment and it stung. (Bananas are surprisingly acidic.)”
2. “I can only taste a food if, say for instance, it’s something buttered on toast, if I put it in my mouth upside down.” (After extensive surgeries in upper mouth.)
3. “I can’t cope with any spice or anything hot, still burns my mouth badly, sometimes can’t eat oranges, citrus etc still burns my mouth after 5 years.”
4. “Everything tasted like salty butter before I got my taste back so mashed potato and gravy was my ‘go to’ meal during this time.”
5. “I could taste the salt in my mouthwash throughout treatment.”

To conclude

Taste doesn’t seem to be as critical as our other senses, but it has a big impact on quality of life. Eating is one of the pleasures and necessities of life and a big part of our social existence. It is very sad when this pleasure is taken away from you. Above is a small survey of about 20 of our members.

Some of our members are “foodies” and one has written a recipe book that goes beyond custard and smoothies. https://tinyurl.com/ynzybpx8