New Problem: Radiation Recall?

ProustLover

Hello old friends, and new. The good news is that my husband's recent scans are all NED, five years out from treatment for SCC HPV+ cancer of tongue, mets to neck. Some of you will remember that we've had a few scares (episodes of new tongue dysplasia) handled by laser ablation. Happily, the state of his tongue has been good for over a year, and scans show nothing suspicious. New problem: swelling and redness on left side of face (which received the most radiation five years ago) as well as periodic discharge of mucus and increased dry mouth. Plus, his tongue feels "weird" and eating is painful. The swelling and redness increase and decrease, but don't disappear. This has gone on since December, to the extent that he now relies on blended food and supplement drinks. Family doctor ran tests for infections and inflammation - negative. Sent us back to Head & Neck surgeon (great doc, very familiar with husband's case) as well as dental oncologist. The tests and visual exams show nothing suspicious, and working diagnosis seems to be "radiation recall" brought on by stress (he's had no shortage of stress this past year.) I see on Dr. Google that radiation recall is a thing, but I don's see that it's caused by stress. Anyone have any insights re: a late-term radiation effect quite like this? The vague diagnosis seems to mean just "wait and see."

wbcgaruss

Well, Proust, sorry your husband has to endure another situation involving his cancer and treatment. Certainly unexpected. I have a thing that goes on sometimes where my back molars are rubbing and or pinching the inside of my cheek and feels like it should be red and sore but when the ENT and dentist looked at it they both agreed everything looks normal. My ENT says it is nerves that were affected during my operation for lymph nodes. There are some strange things that can happen with these treatments years later and it seems your husband is experiencing one of them. I certainly hope you can find a solution to this very soon or that is just passes over time and is not an issue anymore.

Wishing You the Best

Take Care, God Bless-Russ

ProustLover

Thanks for the well wishes, Russ. Expect the unexpected, indeed! This may not qualify as a major issue in the grand scheme of things, but it sure is disheartening. After eating without discomfort for almost 5 years, it's a drag to see the comfort level rolled back. I believe this is uncommon, and that for most folks the ability to eat and enjoy food after radiation continues to improve over time. The concept of "radiation recall" is interesting, though, and is apparently brought on after radiation by the administration of certain drugs. It's something for folks to be aware of before embarking on certain drug regimens.

wbcgaruss

Dearest Proust, I know what you mean for sure about disheartening. I feel bad for your husband and you also because when a family member has cancer or other problems related to it, it affects each member, the whole family but spouses especially because they are the front-line caregiver. And with your husband being 5 years out, at that time frame, they say you are past a period where cancer will show and you are pretty well in the clear. And he is still clear of cancer but this totally unexpected side effect from radiation treatment is, it sounds like to me is a happening out of nowhere, totally unexpected, and a who would have thought kinda thing and I am sure it can get you down. Do your best to look to the positive, look forward to this thing resolving itself with time and patience and prayer or they may figure a way to treat him to counteract this situation. Either way stay strong, stay hopeful, stay positive and (NEGU) Never Ever Give Up.

Take Care, God Bless-Russ