ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Anna7 on April 19, 2008, 02:20:11 am
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I had my second CK treatment on Thurs, 4/17. Tonight (Fri) while I was a work I felt a burning sensation on my skin near the right corner of my mouth. I pulled out a mirror and saw a round, pink, raised area of skin a little over a quarter inch in diameter. It is now 1am Saturday morning and too late to call a radiation oncologist. I'm freaking out over here. I this is a radiation burn or something? Has anyone ever heard of this possibly happening? I have a left AN and the robotic arm has been firing from all sides of my head. I posted for the doctors on the Cyberknife support forum but may not hear from them for a while. Please, if anyone has any insight about this I would greatly appreciate hearing from you.
Anna
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anna,
Dr. Spunberg did respond to your post on the CK Patient Support board as follows:
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Jerome J. Spunberg, M.D.
Registered Member
Date Joined Feb 2006
Total Posts : 3496
Posted Today 4:08 AM (GMT -8)
No burns, but occasionallly you can get a very mild temporary skin reaction (redness, localized hair loss). Most times there is no reaction at all.
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Most that note this notice it around the hairline, based on what has been shared with me and my own personal experience... not near the mouth.... so, that is the first I have heard. I also want to rule out that it could possibly be other things, like a canker (sp?) sore caused by nerves or another issue. I'm no dr, that is for sure...... but, just a thought.....
Please hang in there... please try to take a deep breath..... you will get through this. I know its scary and a "fear of the unknown", but know that me... and so many others are rallying around you and are here for you. You can see that many of us AN'ers (regardless of treatment option) are doing as best as we can and we are looking forward to you joining the ranks of "postie".... you are on its heels now. :) I hope you finally got some sleep.....
Hang tough... you got my phone number... pls feel free to use it if you want.
Phyl
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Thanks Phyl,
I did see the doctors' posts on the Cyberknife support site. One of them did say that it could be from the CK after your post. I don't believe it is a cold or canker sore, it's not actually touching my lip or anything. But, I've never had a canker sore and only one cold sore in my life. I'm going to phone the on-call radiation oncologist as soon as I finish this post.
Anna
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Hey Anna,
You seem to be having a time of it, I hope things will settle down a little bit for you. I read the posts on the CK forum as well. I don't think you should worry about the pink spot or the machine missing its target. You may be having a skin reaction to the x-ray, but you are not in any danger. It is natural to worry about it, since having CK treatment is not an everyday event, but you are in good hands. Try to sit back and let it all unfold, and see where you are in a week or two.
Best wishes, it won't be long now.
Steve
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Anna,
Hope you're feeling better. Just wanted to let you know I had a sort-of similar experience. I had numbness at the corner of my mouth during CK on the same side as AN, but never saw any marks. I never had any scalp issues or hair loss, just the numb/tingly spot by my mouth, and some weird sensations with my tongue also. It's a pretty sensitive area anyway, so I'm thinking it probably doesn't take a lot to irritate it. The CK was definitely firing from all around my head as well, so I wouldn't worry about that part of it. They just want to hit the AN from a bunch of different angles. Hang in there!
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Thanks for the comforting posts everyone. I'll hang tough until I can speak to my radiation oncologist on Monday. I took pictures of the burn mark in case it fades by my next treatment session on Tuesday. I did speak to the on call rad onc this morning. It bothers me that he dismissed the possibility that it may be a burn mark almost instantly. He said it must be some unrelated reaction. I'm sorry, but. I know a burn when I see (and feel) one. A doc on the Cyberknife support website said that one of the beams may be "hotter" than necessary. I just want this corrected. I especially don't want them hitting that same spot if there is a problem for my next three sessions. Unfortunately, I was selfishly hoping that others had the same experience so I could chalk it up to a typical side effect. Thanks again.
Anna
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Sounds like a cold sore, you described it to a tee.