Scheduled for Radiation in June 2025? Let's support each other here!
Share experiences, ask questions, get encouragement, and support others who are going through radiation therapy along with you.
Please share your diagnosis, any previous treatment you've had, and your scheduled start date along with your radiation schedule. We're all here for you!
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This site is very quiet since doing the revamp a few years ago! But, I will post in case anyone wants to share experiences or has questions.
I started Proton radiation on 6/2/25. I have at least 30 sessions, maybe 35. I was hoping for fewer but that's how it goes. I have had a lot of anxiety over skin reactions but it is what it is. I was somewhat taken aback with the proton center in that they do not prescribe a steroid cream, so I asked for one. They also don't recommend Miaderm - just fractionated coconut oil and then the usual Aquaphor, Vanicream, etc. I have had to ask repeatedly for the steroid cream and got a small tube when I started. I will need refills and will ask again. I have very sensitive skin and get rashes easily so I wanted to be prepared. Each time I meet with a nurse, honestly, they really downplay the dermatitis prevention and in my mind, believe it's inevitable. 🤷 But, in this journey, I have learned that one has to advocate for oneself so I will keep asking.
The first session was very difficult for me because it took a fair amount of time to position me. I have arthitis in my neck and shoulder, plus some nerve pinching and I have always been inflexible. So OMG, shoulder was aching and my hand and forearm fell asleep. It was brutal! The proton itself takes about 1 minute per area, there are 2 areas. Yesterday went much quicker so the only issue I had was shoulder pain during the positioning and treatment - it took about 15 minutes or so. I can bear this if I have to, as long as it doesn't get worse and I can't hold the position. That said, I have been waking up daily with a headache and in my experience, it is related to my neck / shoulder strain. I asked about my neck - how far do I need to turn it? I was told that the reason you turn your neck is so they don't accidentally proton the head. Yep, that certainly made me want to turn my neck even more. 😕They have advised me a few times, could you turn your neck more, so I did.
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@paknc I sympathize with your sensitive skin. I was allergic to both the skin glue and the surgery prep used for my lumpectomy & lymph node surgery. I’m finally getting over that after 5+ weeks only to start radiation in 2 weeks. I hope your remaining sessions are easier and you get some relief from any pain.
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