Head & neck radiation side effects continue, especially swelling
I was diagnosed with Esthesioneuroblastoma in June of 2021. I underwent two surgeries to remove the tumor and repair my skull base. After healing from those surgeries I underwent 30 rounds of radiation therapy to my head and neck. During radiation therapy I experienced brain swelling but with the use of steroids we were able to continue and ultimately complete the full 30 rounds. Since radiation has ended in November I have experienced a myriad of lasting side effects. I was initially told that it would take 6 to 8 weeks to heal from radiation, but I am finding that even this far out (11 weeks) I am still experiencing some pretty significant and frustrating side effects. The most concerning side effect I am experiencing right now is swelling. My face and neck are very swollen but I have noticed that I am experiencing swelling in my arms, legs, hands, shoulders, etc. Pretty much anywhere that can swell has developed swelling although my face and neck are the most noticeable. My oncologist doesn't think this is lymphedema and other issues such as thyroid dysfunction and Cushing's syndrome have been ruled out as well. My oncologist says this is an "inflammatory response" because I was sensitive to the radiation treatments and this will likely take an additional 1 to 3 months to resolve. To me, it just seems like no one really knows what is going on or what to do about it and they're just making guesses. I'm beyond frustrated at this point and am desperately seeking advice from anyone that may have experienced this or is currently experiencing this. Being swollen all the time is extremely uncomfortable and is one of the main reasons that I have been unable to return to work. Though I would not wish this on anyone, I hope someone out there has gone through this or has some advice to offer. I'll take any little bits of information or advice available.
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I had cypberknife radiation due to metastzied lung cancer almost three years ago and I am just now learning that my skin problem are most likely related to the radiation. None of the side effects were explained to me and I have seen a dermatologist who, after more than two years of my own research, found that there iymphoedema which affects my scalp and skin. There was/is minimal swelling and only recently, when the symptoms evolved into weeping lesions, initially along the chin, expanding - as liquids do - wherever it could find room. The lesions then turn into what feels like "barnacles", that will leave scars. I have lost most of my eyebrows, eyelashes and all elasticity of my skin, a depressing development. I have been on every imaginable topical and oral medication for acne, fungal and bactterial infections and I am now on an injectable med. None of them have worked and I am at my wit's end. Has anyone experienced such long-term effect and what can be done about it?
No, I haven’t considered this. I will research it now.
@loridalton do you think that maybe it is lymphedema?
Have you asked or checked for this?
Diagnosed with invasive lobular cancer of the left breast in January 2025. I had a lumpectomy and 5 days of radiation. Radiation ended on April 18. Started taking anastrozole, an estrogen blocker, 2 weeks later. I had an allergic reaction 1 month later, red cheeks, nose, and swollen eyes. Then I took exemestane, another estrogen blocker, and had an allergic reaction 9 days later, with the same symptoms. Both times, I took a steroid to alleviate the itching and swelling. My oncologist said to stay off everything until my appointment in August.
Today, July 4th, my left eye is swollen, and I have itching on my left ear, neck, and a rash on the left side of my back and behind my left knee. went to urgent care, and the doctor said I can't take any more steroids. She wondered if this was a reaction to radiation therapy. Any thoughts?
Thank you
Thank you for the hug. Hope you’re doing good.😀
My husband has to have a few lymph nodes removed from neck, how bad is that to go through, we’re pretty nervous. He already had treatment and now a couple more show up six months after. Not happy.
I am open to all options thanks for this information I haven’t seen it before
Please I have been there and back radiation damage ,chemo ,feeding tube lost 90 lbs .What save me was Hyperbaric treatment 60 sessions 2hrs a day x60 days undid all radiation damage and saved my voice box I had HPV tumour on my larynx.Please look into hyperbaric oxygen treatment I cannot say enough about it Saved Me 🤞good luck
Thank you for your reply. I never lost faith just when i was told it is a long recovery i never dreamed it was going to take this long !! I found out quickly the Drs dont want to be pinned down to any time frame. I would just like the swelling to go down so i can get some teeth in and start eating food again.