Radiation

I had 15 radiation treatments three years ago. I'll try and synthesize what I learned in the hopes that it will be useful.
1. I was offered tattooed dots as part of the set-up. I declined, and that was no problem--the techs just marked with a sharpie.
2. I was given a robe and changing room, but on the second day I was told I could just wear a button down short and no bra. That worked for me. Find out your options and what works best for you.
3. I was given various creams. All of them worked well. Just slather it on, but be clean for the radiation. I didn't burn at all. You may get lots of cream suggestions here. In my experience they all worked well if used!
4. My mood was bad going in--I felt tense and exhausted just thinking about it. I set up a reward system. I went plant shopping at the near-by grocery store as it was spring a few times a week, and had a fancy caffeinated drink every other day or so. I told my husband I needed to hear live music once a week--and he got us tickets. You might not love caffeine and Mozart as I do, but reward yourself with things you care about.
5. I was tired during, but feel that was partially emotional. You should get a weekly meeting with the radiation oncologist, and that is helpful. My white cells were somewhat low towards the end, but bounced back. I kept to my usual exercise routine--and had to get all those plants in the garden! This helped.
6. At the end I took my husband on a bucket list trip because he turned 70. I took it easy on the trip, but we were both surprised that my energy was quite good.
7. Now 3 years later...no fatigue. I had serious lung problems going in and the radiation oncologist said there inevitably would be some sub-clinical damage. I have noticed maybe a 3-5% diminished breathing capacity, but I don't think that is noticeable with healthy lungs.
You can do this! Share your concerns with the techs as you go along--they know a lot. And keep in touch if you feel like it. It was a good treatment for my rare NET in breast, and I'm glad I did it.

@mir123 Thank you for your response to the question. I never thought of what the side effects would be, my concern presently is about reconstruction. May I ask you - it took you three years to recover completely just from the radiation treatments? How long were the treatments? Were you advised no coffee? How tired were you? Just during the treatment or post-treatment? Did the techs answer all your questions or did they say that the radiation doctor would answer it for you? Thank you for your response! Jane

@jlwilcox Glad to hear from you. I found it helpful to think about radiation beforehand. The fatigue was not bad and lasted only a few months after treatment finished. I'd say in 3-4 months I felt completely normal. Each treatment was only a few minutes, but there was waiting room, and getting adjusted on the table. With a short drive I just gave it about an hour per treatment in total. Never heard anything against coffee--but each situation is different. The techs were friendly and informed--they answered questions but I guess if it was medially technical they would have referred me. When do you start radiation? I've hear folks say it is the easiest potential part of breast cancer treatment to tolerate.But you are right to want to be informed.

I finished 20 treatments of radiation in December. I have very fair skin so was worried about skin burning. I used Jeans cream (given to me by the radiation techs) liberally each evening and morning and my skin did great. I had a relatively mild rash, managed with cortisone cream, near the end. The fatigue came at the end for me and lasted for about a month or so after. But, nothing crazy. The radiation I had was for my left breast but between the skill of the techs and the advancement in equipment I felt confident that my heart was being protected. Trust the techs. They helped me a lot. They were friendly and reassuring. The other thing I did was to accept offers from friends to drive me to some of my treatments. I didn’t really need it (my fatigue hit in the afternoon and treatments were in the morning) but it was a nice way to feel supported. As always, ask questions until you are satisfied.

Thank you for sharing your experience. I am also fair skinned so I'm worried about how my skin will respond. I will need to be diligent with applying lotion. And it is my left breast so I've been practicing holding my breath. I'm a bit concerned about working during the latter phase of treatment. We shall see how I do.

I’m being treated now- 15 sessions, 5 days a week, proton beam radiation at Mayo. 3 down and so far so good. I’m using Mepitel film to help prevent radiation burn and skin sensitivity. I learned about it on this forum. The research looks encouraging so I thought I’d try it. Out of pocket expense, but cost is not prohibitive. Good luck!
https://store.mayoclinic.com/mepitel-film-dressing.html

@susanes Thank You!
I will be going to radiation 5 days a week for 4-6 weeks. I should start in about 3 weeks. I'm trying to be optimistic.

If you are large-breasted and if the radiation is directed to the underside of your breast, the ComfortSlings products are a game-changer. When I was out and about during my radiation treatments, I wore their strapless cushion inside my bra. As soon as I returned home, my bra came off and I put on the ComfortSling Single Sling, wearing it as many hours of the day as I possibly could, especially while sleeping at night. Additionally, I removed the sling often, lay on my back and applied colorless, odorless gel to my entire breast, including the underside. I remained in position until the gel was fully absorbed (it took seconds); then I immediately returned the ComfortSling to its position beneath my breast. By the treatment’s end, my skin had darkened slightly at the radiation site, but was otherwise unchanged. I had no pain, no broken skin. The protection the sling provided in eliminating perspiration and preventing skin-to-skin abrasion combined with the soothing gel was priceless. http://www.ComfortSlings.com

Had 21 radiation treatments, used recommended cream after. Started to burn a bit after 15 and used aloe Vera with Lidocaine (Australian Gold). Relief! During my treatments my constant cough got really intense, mucus, respiratory infection, antibiotics. Pulmonologist & CT scan showed damage to left lung ( left breast treated). Broncoscopy to remove and test affected area. Seems I had undiagnosed bronchiectasis and radiation scarred the lung. If we had known, my treatments might have been different.

@mir123 my understanding was they were/are able to pinpoint exactly where they direct the radiation…. But I’m curious….everyone talks about skin issues and problems…and all I see is being inserted into a tube and slowly spinning like a hotdog.
Since mine is on the left side - will it harm my heart? Thank you in advance for your response.