Radiation Recall?

ThreeTree

It's been a little more than 2 years since I completed proton radiation. Suddenly this evening, after I put some aloe on the radiation area, it all turned bright red and is painful and itchy. The whole outline of the old radiation field became visible, so it has something to do with radiation. Everything I read about radiation recall however, says that it occurs when other chemo drugs are administered after radiation. I am not taking any chemo drugs. I have not done anything differently for 2 years. No different soap, no different lotions, etc. No different eating habits, supplements, or drugs.

Over the past week, I had noticed some small areas of pain and itching within the radiation field, but didn't think too much about them. I put the aloe on this morning and it actually seemed to soothe those spots. Late this afternoon the pain and itching came back, so I thought I'd put some more aloe on the area. Much to my surprise the whole radiation field now looks like a bad sunburn and is painful and itchy. I never had anything this bad even when I was getting the radiation. After applying the aloe then right as I watched, the whole area turned an bad sunburn red.

Any ideas what this could be? Has anyone else experienced anything like this? If so, what did you do? I might message the radiologist tomorrow, but she's not my favorite person and haven't seen her for almost a year. Have a routine follow-up scheduled for mid January and I was expecting it all to be routine and uneventful.

moth

I read recently about radiation recall following a covid vaccine

I would suggest messaging the RO.

ThreeTree

Moth - Thanks very much. I have had Letrozole side effects that seemed to increase after both Covid shots and the booster. This is the first time the radiation area has done anything, though. I had the booster in late October. It's actually calmed down slightly since I posted, but that 's what I thought this morning too. I'll see what things are like in the morning and probably message the radiology place.

Jelson

I had radiation recall, was seen by the RO and told to take Aleve which I did. It occurred again a year later and I just took Aleve without going to the RO and it resolved. Interesting about it possibly being triggered by the vaccine.

ThreeTree

Jelson, thanks. After "sleeping on this issue" overnight I am thinking about just waiting it out for a while and maybe trying something like Aleve and not contacting the radiologist. I also am starting to think it might have been triggered by what I think was a "bad" bottle of Frankincense oil. Ever since I was diagnosed (3 years ago), I have put frankincense (boswellia) oil on my chest area with no problems whatsoever. It is good for skin cancer, and I've had great success with it for basal cells on my nose, face, etc., so I added it to my "chest skin regimen" too, years ago in hopes that it might help with any kind of skin or local recurrence problem. I got some recently online and I noticed that one of the new bottles had a very small leak when it arrived, but I figured I'd use it anyway. After a few days thouigh, I noticed some of the pain and itching I described previously. I also noticed that the oil was leaving a sticky residue on my chest - not what usually happens with the frankincense oil at all. I decided to throw the bottle out and that's when I put the aloe on the painful and itchy patches, but then the whole area "lit up" and started to look like a real bad sunburn. It only affects the radiation field, however, and not the normal skin around it, even though I apply the oil there too. It does calm down after awhile though, so I think I will just leave the area "substance free" for a few days, try something like Aleve, and then just watch and wait. Initially it was real scary though, when the whole radiation field almost instantly turned bright red like that after 2 years of being totally fine. It was never that bad when I was getting the rads!

I really appreciate the input!

LW422

After my last radiation treatment, a nurse told me to avoid really hot showers or letting the water "beat" on my radiated area which could cause radiation recall. I found a reference to that online... "Recall erythema is a phenomenon occurring when an area of epidermis treated with laser is later exposed to a trigger, most often sunlight or hot water, causing erythema in the zone of laser treatment after post-treatment erythema has already resolved. Radiation recall dermatitis is a more specific subtype of recall erythema in which an area treated with radiation is subjected to another exposure causing erythema in the area of previous radiation." https://pubmed.ncbi.nlm.nih.gov/29283687/

I have not had any "recall" but my treatment ended 3 weeks ago. I do love hot showers, though!!

ThreeTree

LW422 - Wow, and thanks very much for this! I had had a hot shower and I love to let the water "beat" on my chest, because it feels like a nice massage most of the time. It was that evening or the next day that I put the Frankincense oil on and just everything (the whole radiation field) turned bright, bright red and got painful and itchy. After that I decided not to put anything on the area and to just leave it alone for a few days. It's gotten better and better each day. Yesterday I took a mildly warm shower, just to be more gentle in general on the area, and things went much, much better after that. I still have some itchy patches where I got some spider vein areas after the radiation, but most of it all has calmed down. Maybe it was a combination of the hot shower pounding on my chest and then something that I put on it. I understand that different chemicals can do it too. It's just that it's been two years since I finished the radiation and I've had no trouble whatsoever until this, and it was really frightening at first.

Thanks so much - I'm going to look at the article.

LW422

ThreeTree--I certainly have no expertise about such matters, but I remember thinking "really??" when the nurse stated that about hot showers. I'm not to the point of letting water beat on me but I do love the heat. I had heard that it's best to avoid direct sunlight on radiated skin but nothing about hot water. I did some "internet sleuthing" but didn't find a lot about it.

I'm glad to hear that your skin is getting better. Take care.

ThreeTree

Thanks again, LW422. I was never told anything about what to watch out for. Also, at my initial meeting with the proton radiologist I told her I had read about radiation recall being a side effect and that it concerned me, and she minimized the whole thing and told me that it basically never happens and when it does it is super rare. That's not the sense I'm getting these days. I know I am not the only one. She also never told me about the spider veins that develop (and itch) until I noticed these patches of spider veins forming and then brought the matter up to her. Only then did she acknowledge that it its radiation damage and that they could get worse over time. I'm really tired of all these doctors downplaying negative side effects. I almost think it should be considered a form of malpractice. Well, at least my chest troubles are calming down for now. Who knows what else I might be in store down the road?

ThreeTree

I just found this article from Nature that describes a case of radiation recall induced by Letrozole. The lady involved got bad radiation recall symptoms after starting Letrozole, but then after stopping the treatment, the recall symptoms resolved. The authors speculate that radiation recall is a much more widespread problem than is known, can be caused by AI's, and that its increasing occurrence and the inattention paid to it, might have to do with people living longer from current treatments and the fact that some are maybe just "dealing with it" and not always having such bad cases that they have to go get treatment. Oh, the things they don't tell us! In this sample case, the lady had to go to the ER, because of real bad symptoms, and initially radiation recall was not suspected:

https://www.nature.com/articles/s41523-021-00271-3

LW422

Interesting about the Letrozole, ThreeTree. And I totally agree with you about doctors downplaying SEs. I found that to be the case with my MO, RO and SO... none of them wanted to admit that there were possible terrible side effects to chemo, radiation or surgery. I suppose they want to gamble that we won't have the SEs and not terrify us with every "possible" side effect that might occur. We are already shell-shocked and terrified of cancer, so maybe they just don't want to pile on the anxiety.

I hope you get things sorted out and get better soon. It's frustrating to not know what is causing it, though. Take care.

ThreeTree

LW422 - I think you're right about the downplaying being due to not wanting to "terrify" us. (It's terrifying no matter what you know or don't know), as I have asked some nurses why we aren't told about so much, and they usually say that they don't want to "overwhelm" us and that it's hard to know how much to say or not say.

Thanks again for your contribution, it is appreciated. You take care also and have a real nice holiday.