Radiation

Posted by babs28 @babs28, 20 hours ago

Hello all. I found out two weeks ago that radiation has been recommended for treatment of my breast cancer. Based on what I've read on reliable sites (Mayo Clinic, ACS, and Pub Med research) I agree with this decision. I know the radiation oncologist did a deep dive into what little research exists for my BACC (Adenoid cystic carcinoma,) I met with the radiation oncologist and a radiation oncology nurse on Monday and they discussed what to expect regarding treatment and side effects. Next week I have my simulation appointment. I should start treatment about 2 weeks after that. I would like to hear about others' experiences with radiation and about helpful hints to make it through. I have to admit to a good amount of worry about side effects. Thank you!

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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.

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Profile picture for Miriam, Volunteer Mentor @mir123

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.

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@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

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Profile picture for Stuck In the 70's @jlwilcox

@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

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@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.

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