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Summer/Fall 2023 Radiation Thread

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Going through or starting radiation soon? Gather here to get answers, insight, and support from others navigating radiation treatment and its side effects right along with you.

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  • heather2js
    heather2js Member Posts: 3
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    I have completed 11 of 19 treatments. Definitely getting red and itchy now, which is not surprising at all though uncomfortable.

    The last 4 will be tumor bed boosts, and I'll have to do the breath holding since my cancer was on my left side.

  • newfmama
    newfmama Member Posts: 46
    edited September 2023
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    I’m starting radiation in the next few weeks. Next week is the mapping, CT simulation scan, tatoo, etc. appointment. Rad Onc said 5 weeks/5 days a week. I was caught off guard when he said chest wall, right axilla and regional lymph nodes. It turns out the recurrent lobular tumor was actually one or more lymph nodes and not breast tissues remaining after bilateral mastectomy 12 years ago. Pathology noted lymphatic invasion/peritumoral lymphocytes and extensive perineural invasion (whatever the hell that means). I was told 12 years ago that my radical mastectomy reduced my chances of recurrence to 1-2% plus the almost 6 years of Tamoxifen/Aromasin would further increase my chances of survival. I’m thankful that I’ve had 12 years (or should I say 6 years without treatment). My husband has stage 4 melanoma and has been in treatment for the past 18 months, before that we had the f____ing pandemic and 5 years ago my daughter had CNS lymphoma (thankfully treatment and stem cell transplant allowed her to live). Suffice it to say it has been a tough time. I can’t seem to find anyone who understands what I am going through. Please pray, think positive thoughts or whatever you do for me. Thank you so much.

  • moderators
    moderators Posts: 8,066
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    Oh @newfmama, it HAS been a tough time! You're in the right place for support, we all understand completely. We're thinking of you as you begin treatment, sending all the positive thoughts your way!

  • pinkrules
    pinkrules Member Posts: 97
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    I just finished radiation treatment. Accelerated partial. I had a choice, accelerated five day or the 15 day treatment. It was very easy, with hardly any side effects, from start to finish thankfully as I had a lot of anxiety about this.

  • newfmama
    newfmama Member Posts: 46
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    @pinkrules It’s great that your rads went well. I’m on #4 of 25 and my skin is looking pink and feels warm. I’m trying to follow some of the things on the list. Pretty stressful going everyday and frustrating as they always seemed delayed. What I thought was going to be a quick 20 minute treatment hasn’t worked out that way thus far.

  • pinkrules
    pinkrules Member Posts: 97
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    I'm so sorry for your delays. Going every day is stressful enough. I was fortunate to be able to make my radiation appointments in the early morning so they weren't behind yet. Usually just one person was ahead of me. At my consultation I cried and said I just can't do six weeks of radiation (like Dr Google said). She said they do not do six weeks anymore because results are the same as with three weeks (15) of radiation. I was so relieved. 15 is doable but she said because my cancer was caught early I could chose the 5 day accelerated. Appts were every other day. Three the first week, two the second. Aquaphor applied 3 or 4 times a day and Aloe Vera in between really helped with the sunburn feeling. I wish you well and love your signature about true strength. That hit home as I tried holding it together for my family and grandchildren throughout surgery and radiation.

  • memorykey
    memorykey Member Posts: 9
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    I just finished my 4 weeks (20) of daily radiation and was very grateful for all of the information and insight shared by others on this site. My daily visits went well, but I have been diligent about applying both the steroid cream the dr prescribed, as well as a great cream with calendula that I found. I've been using a baby cream by Weleda that has calendula — so twice daily with that and the steroid and my skin has been doing well. I found that once the radiation started, I was thirsty more often — so thanks for the advice on this site from a few people who recommended bringing a big tumbler/bottle of water with them. I drank water on my drive to and from the hospital (along with just more water during the day) and I think that also helped.

    Sending positive vibes to anyone who is going through radiation this Fall!

  • pinkrules
    pinkrules Member Posts: 97
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    Congratulations on finishing your four week treatment! What an accomplishment! On my last radiation treatment I was told I could eat anything I wanted now. I didn't know that there were diet restrictions. lol

  • moderators
    moderators Posts: 8,066
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    Congratulations, @memorykey!

  • rocki
    rocki Member Posts: 2
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    Radiation graduation! ☢️🎓🥳 I finished my last treatment (21/21) yesterday and started Anastrozole today. I'm experiencing some skin irritation that I'm treating with the Calendula cream and Aloe gel my RadOnc gave me. I also have a Lindi Cooling roll, but haven't tried it yet.

  • moderators
    moderators Posts: 8,066
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    @rocki, congratulations! We wish you a smooth transition into the new phase of treatment.

    We look forward to hearing more from you soon!

    The Mods

  • sticks_and_string
    sticks_and_string Member Posts: 2
    edited November 2023
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    Had my radiology consult and am waiting for my simulation. I'll be taking 16 treatments plus 3 boosts. I'm ok with all this. I feel quite fortunate that the lumpectomy + radiation + estrogen blocker (probably Letrozole) will do the trick (we won't talk about the survivor's guilt I fight…so many have it so much worse). I'm a planner - I do tons or research and learning so I'm preparing for the burn. I know I'll get samples of Aquaphor but I really really don't like the petroleum (yes, I realize the irony of being irradiated but worrying that petroleum will do something icky to me - hah).

    I can't decide between Rejuvaskin, Miaderm (unscented and/or with Lidocaine), and My Girls (cream and butter). Let's pretend price isn't the issue. How does anyone decide what to use? I'm having analysis paralysis here but I want to have something on hand to start a week or two before treatments - which should be mid(?) December.

    Opinions? Experience? Thanks so much!

    (Left breast, Invasive Lobular Carcinoma, .5cm, estrogen pos, progesterone neg)

  • pinkrules
    pinkrules Member Posts: 97
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    I made myself sick over worrying about radiation treatment but honestly, the only thing that hurt real bad were the tiny tattoos they had to do during stimulation. lol My breast was sore but not unbearable from radiation but I did chose the acceleration treatment. I applied Aquaphor a week before treatment began 3-4 times a day. It helped tremendously. My advice is...take Tylenol before each treatment including the stimulation (advice from my radiologist) because of the positioning of your arms over your head. Also do the arm exercises your radiologist or surgeon should have given you. That helps tremendously with the arms position. I also wore Genie bras with the cushioned removable inserts. The bra stretches so that you can step into them and pull up over your sensitive breast, instead of over your head. Good luck! Hope this helps a little!

  • moderators
    moderators Posts: 8,066
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    Hello @sticks_and_string, and welcome! We're glad you found your way to our community.

    The decision-making process for skincare during radiation can indeed be overwhelming, and it's wonderful that you're reaching out for opinions and experiences. Until other members post with their recommendations, here is an article from our main site that you might find interesting: How to manage skin side effects of radiation therapy

    We hope this helps! We look forward to hearing more from you soon.

    The Mods

  • rocki
    rocki Member Posts: 2
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    Quick update - the Lindi Cooling roll is magical! I used it over the weekend and it really helped reduce the sting and my skin sensitivity where my skin is quite red and in rough shape post radiation! It has vit E in it, so I didn't use it until after radiation finished. I plan to keep one of these rolls on hand for kitchen burns, etc. I'm amazed at how much it helped my discomfort!

  • pinkrules
    pinkrules Member Posts: 97
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    Congratulations, rocki, on finishing your last treatment!!!!!

  • wendyandgigi
    wendyandgigi Member Posts: 2
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    I heard Miaderm is great although expensive. (No lidacain necessary I’m told)

    my rad onc recommended aquaphor so I will start w that and save miaderm for later in treatment.

    I haven’t started rad yet but I’m so scared!

    Mostly of long term side effects

  • pinkrules
    pinkrules Member Posts: 97
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    Wendy, I too was so scared and a nervous wreck going in for my first treatment. I worried for nothing. It was painless and everyone was so kind and accommodating. I had the five day accelerated radiation. Maybe that's why there were few side effects. I had no peeling or bad sun burn. No pain. A little discomfort at times. I started applying aquaphor, the healing cream, days before my treatment, 3-4 times a day. In-between aquaphor applications I also applied aloe vera burn relief gel. Please keep us updated! The new radiation equipment used today is amazing, targeted just the intended area. Didn't go through my breast to my back! Good luck, do relaxing breaths during the procedure!

  • sticks_and_string
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    I owe you an update.

    I started radiation on 12/13. i started Miaderm the week before - 3x/day. On the weekends at night I'm using an additional treatment called Dr. Theiss Ringelblumen Salbe (Marigold Salve) because it's extra gooey and I want to put back as much hydration as possible without impacting my treatments. If I start to get the burn, my doc prescribes steroid creams instead of lidocaine - he says he gets better results. Hopefully I won't need any of it but I'm taking this a day at a time now.

    I am at T minus 10 today. Tomorrow puts me at more than halfway done. The staff is amazing and it, literally, takes me 20 minutes to drive there, I drive through the gate at 9:06 and out of the gate at 9:28, and 20 minutes back home. The entire treatment is, at most, 5 minutes. I do have to do the breath hold - who knew 20 seconds could be so long - but it's only two blasts and that's it? I only had to repeat zaps the first couple days and now I've gotten the hang of it.

    Zingers are a real thing. They always catch me off-guard and take my breath away for a minute or so. But they're not so often as to be a real interruption in my life.

    Thanks for all the advice and commiseration!

    Pam