Radiation Burns

By the time I finished treatment a week ago, the area under my arm was quite burnt and charred.  Reaching for anything was painful as it would crack the skin.  Few days later, skin in my armpit had peeled, exposing raw and painful skin underneath.  That was the worst hit area due to the constant friction in the area whenever I move my arm.  No one had warned me this would happen.  Not the tech, not the nurse, and not the doctor.  They all saw it was getting bad and no one thought to tell me my skin could peel and to prepare me for how to treat it.  Given this and all the other mistakes made at the practice, I didn't initially reach out to them. I tried to self treat with triple antibiotic ointment on the raw skin since I didn't know what else to do (I figured lotion and steroids on open would was not a good idea).  I used non-stick pads to keep the area from rubbing on my clothes, but it did not stay in place very well. I saw a dermatologist and also went to urgent care.  Neither helped and the latter turned out to be as useful as a first aid station. Having run out of options, I got an appointment with my radiologist.  I had very low expectations going in but they actually seemed concerned this time.  They gave me Silvadene cream and a very soft dressing that would cover the area better without too much adhesive.  I applied the cream and dressing before leaving and everything felt better already.  Since my skin was doing pretty poorly, I was told I did not have to do the last week of radiation, which was just boosters.  Things improved quickly with the new treatment and dressing, though it will probably be weeks or months before the radiated areas heal completely.  

Needless to say, my experience with radiation was bad.  I think what made it even worse was that I felt like the doctor and the nurse were so focused on treating the cancer and did not treat me as a person and lookout for my overall well-being.  I get that there is a shortage of doctors, but it constantly felt like they did not have the time for me.  I was always being "squeezed" in for extra appointments when needed.  Mistakes were made.  They were reactive more than proactive.  It is done now, and I don't really have any great advice for anyone.  When faced with cancer and other illnesses, the luxury of time to find the best doctor for your care is not always on your side.  Perhaps one can start researching the radiologists while waiting for or in recovery from surgery since the first consult is usually about a month after surgery.  

Other take aways from my own experience:

• I tried Eucerin, Aquaphor, and Calendula cream.  I liked the Calendula cream a lot as it went on light, absorbed quickly, and had a cooling effect.  Eucerin was ok too. I used Calendula cream more when the skin was red and Eucerin more when it was not (early on and after skin started to heal) Using Aquaphor was my least favorite despite many folks in support groups recommending it.  It was thick and greasy, and it's just petroleum.
• Be sure to lotion up a wide area if getting whole breast radiation: your armpit, side, and towards the back (about the lenth of your hand).  I did not realize the radiation went towards my back until few weeks in when it turned red.  This area had also been exposed to the sun on my walks since I was wearing tank tops, which is a no-no.
• Running cold water over the radiated area after shower felt really nice.  I didn't start doing this until towards the end of the treatment, but it felt like it helped.  Especially after exercising, it helped cool down the extra heat I generated. I wish I had been doing this from the beginning.
• Don't use anything on the area that can trap heat (oil, waterproof dressings)
• Not everyone gets bad burns, but prepare yourself for the potential and know what to do. It can be days before the doctor will see you even if you are hurting.