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List of what to do/get/pack to prep for Radiation Therapy

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Comments

  • Caz52
    Caz52 Member Posts: 2
    edited October 2020

    hi, thank you for the above advise,its helpful as I havent had radiotherapy yet.

  • Kate2929
    Kate2929 Member Posts: 3
    edited November 2020

    SO helpful!! thanks so much!!

  • Kate2929
    Kate2929 Member Posts: 3
    edited November 2020

    Hi

    I have similar stats on your first diagnosis...how was or is femara?

  • dogmomx4
    dogmomx4 Member Posts: 4
    edited February 2021

    Thank you for this thread - it helps with want to get on hand and be ready. I have my mapping season this week, and will start 20 rad treatments the following week. It is nice to hear that not all experiences are negative.

  • moderators
    moderators Posts: 8,633
    edited March 2021

    dogmomx4, so glad to hear this. Please message us if you need any help!

  • JPosting
    JPosting Member Posts: 2
    edited April 2021

    Thank you for the information. I am going in for the CT and molding on May 10th and it just occurred to me that I didn't know what type of bra (if any) I should were during radiation. I've been managing with sports bras after each of my surgeries and they've worked ok because they hold minimize movement of my breast which is very sore. But my husband had to help me put them on for the first week and I wouldn't call them comfortable. I see in the pinned post that you recommend Genie Bra-Walmart, Amoena bras. Is there any update that you would add to those brands? I'm a 38-40 DDD, so finding regular bras is difficult; I'm worried I won't find anything for radiation.

  • moderators
    moderators Posts: 8,633
    edited April 2021

    Dear JPosting,

    Welcome to the BCO community. We are sorry that your cancer and its treatment has brought you here. We are glad that you reached out to join our members. You may want to post your question about bras in the April 2021 Radiation topic where others are currently receiving Radiation and might have some further ideas and suggestions for you. You can also start a new topic for those starting radiation May 2021. Let us know if you need help with that or anything else that will help you to get connected here in the community.

    The MOds

  • alicebastable
    alicebastable Member Posts: 1,953
    edited April 2021

    JPosting

    I wore an old, worn-out bra because I had ink marks on my breast and I was using Aquaphor. Why mess up a decent bra? I'm a DD cup (or half a one? 😄) and I used a comfy stretch bra, probably $10 at Target when I'd bought it years previously.


  • JPosting
    JPosting Member Posts: 2
    edited May 2021

    @fModerators, Thank you for the welcome. I will post there as well.


    Also, thank you to you @AliceBastable.

  • KimPossible123
    KimPossible123 Member Posts: 1
    edited May 2021

    Thank you ladies. I am so glad I found these recommendations. Didn’t know what to expect and this journey is very daunting. My mom 84 and I diagnosed two weeks apart. Our treatment plan is different though. So I need to be a patient and a caregiver all at the same time. This is very helpful. Is there an updated list for radiation and for coping with the side effects of the hormone blocking treatment. I had the surgery 4 weeks ago.


  • mhk531
    mhk531 Member Posts: 1
    edited July 2021

    I'm very fair skinned with white hair. I sunburn easily. I had left breast radiation in 2013. The UNC Lineburger Breast Cancer radiation department recommended Aquaphor. It was awful. I was so cooked from the first round, I did not have a clue how I would make it. Aquaphor was like putting butter on a burn. So, I remember from decades ago using 100% pure Aloe gel due to a serious sunburn I got on a cruise. My teeth were chattering and I had a nasty headache. For radiation, ALOE gel saved my life! I applied it over my cooked and blistered breast and underarm and it drew out the heat and discomfort. The next morning, the redness was completely gone. I packed it in my purse and as soon as I was radiated and changed back into my clothes, I applied it. I vote for 100% ALOE GEL, and consider taking ALEGRA OTC, which is a wonderful antihistamine that won’t make you sleepy.

  • alicebastable
    alicebastable Member Posts: 1,953
    edited July 2021

    I used both aloe gel and aquaphor. I'm also super fair skinned and I only had dryness on my breast and my clavicle turned red. It's all very unpredictable. My Mom had dark hair and always tanned instead of burned, but she had more radiation issues than I did.

  • Suee7161
    Suee7161 Member Posts: 1
    edited August 2021

    anita has large cup size bras including mastectomy bras that are very comfortable!. Also my radiologist prescribed Me flamazine which was very soothing and helpful for the radiation burn, it's used to treat burns.

  • delarbar
    delarbar Member Posts: 15
    edited February 2022

    I've had my surgery and radiation is the next step. I'm not concerned about the actual radiation but the machine has me stressing. I cannot have an MRI without adivan or xanax, cannot do the confined spaces.

    I have not seen the machine and I will be asking the doctor to show me on the next visit. He assures me I will always have a view and the machine is more like a CT Scan, which I don't have a problem with.

    Anyone have claustrophobia that has had radiation?


  • delarbar
    delarbar Member Posts: 15
    edited February 2022

    Looking for recommendations on the best cooling towel. There are many different styles and reviews.

    What has worked for you?


  • tb90
    tb90 Member Posts: 296
    edited February 2022

    There is absolutely nothing confining about the radiation machine. I used a cool damp towel and ice at the very end of treatment when needed. I didn’t purchase a thing except for tulips 🌷 to take home with me after treatment.

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022

    Agreed, the radiation equipment is not confining in the least. I was on a table, on a form to keep my body positioned exactly. The machine moved around me, in a wide enough arc it never felt constrained at all.

  • delarbar
    delarbar Member Posts: 15
    edited February 2022

    Thank you,I watched a video someone had posted of their treatment and feel much better.


  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited April 2022

    I also have claustrophobia. The radiation didn’t bother me at all since it’s all open. No stress. Best of luck.

  • njrunner
    njrunner Member Posts: 1
    edited June 2022

    Hi, I completed radiation treatment last year but wanted to share what I thought might be helpful to anyone who is about to go through treatment. So many good tips listed already! Sorry for any redundancy.

    Consider not wearing a bra to treatment - I'm small so I would usually just put on a big tee shirt for my appointment and cover up with a windbreaker or loose sweat jacket. That made it easy to change and kept the pain/abrasion to a minimum once my skin started wearing down.

    Water - I brought water with me to every appointment and drank a full bottle on my ride home. I'm not sure if it helped, but it made me feel like it did and I knew it was something positive for my body, either way.

    Music and memory - To keep my mind occupied during treatments, I played a music memory game. There was always music playing in the treatment room and each treatment lasted between 3-5 songs. I would try to remember the songs that played during that day's treatment (as each new song started) and test myself during treatment and on the ride home. Sometimes by the time the third song came up I had forgotten the first! It sounds silly, but it gave me something to focus on.

    The best ointment. Ever. - I'm no doctor, but I highly benefitted from the use of silver sulfadiazine cream that my radiologist prescribed. My skin had begun burning, to the point that I was in a fair amount of pain. The cream worked fabulously and fast, and it was a tremendous relief. If your skin starts to burn, ask your doctor about it.

  • moderators
    moderators Posts: 8,633
    edited June 2022

    Thank you so much for chiming in, njrunner! These tips are incredibly helpful - we love the music memory game!

    The Mods

  • bong
    bong Member Posts: 40
    edited June 2022

    hi - just finished radiation and want to add in my two cent tips.

    tips

    1. Wear an easy to take off shirt to your sessions.

    2. If you had had chemo beforehand and are somewhat bald, don't worry about it. Others will be bald too.

    3. Bring a fairly big bag to put your shirt in while you are wearing the hospital gown.

    4. Bring water to drink. I don't use plastic bottles anymore.

    5. Make sure to do your lymphedema exercises and stretches if you had mastectomy prior. Daily if not more often. I sometimes do it while waiting for my radiation session.


    Once you are home tips:

    1. Sleep or rest if you are tired. I was not very tired at all but they were moments.

    2. Try to do walks or light exercises like yoga, mayb an hr or two daily

    3. I had redness and itchiness but not too much. Just used pure virgin olive oil and antihistamine cream. I worried about rash and itch beforehand because I was always the type to get itches and rashes.

    4. I also had and still have low wbc and low lymphocytes. Do not freak out too much if you see this.

    5. Not everyone has very extreme reactions. Pls do not freak out or worry too much beforehand.

    6. I started coughing more during radiation. It stopped almost immediately after.

  • sallyred
    sallyred Member Posts: 24
    edited June 2022

    Here's my 2 cents: A lot of the podcasts, things I'd read talk, and people I'd talked to indicated that they developed relationships with their radiation technicians and/or that these techs were some of their favorite people and/or some of the most compassionate. I hope that is your experience - it wasn't mine.

    I assume the techs were proficient at what they did, but they treated me as a site for radiation, not as a human being. They were all travelers (locum), and presumably that was a reason that they couldn't tell me about things I saw or experienced during treatment ("we're out of the room, so we can't see what you see, and don't know ..."). I needed my RO to intervene at one point, and wished I'd done so at least a couple of other times.

    I don't think their lack of compassion made a difference in the effectiveness of my treatment. It did make my 21 days of radiation the hardest for me (and I had very little skin reaction, no fatigue, and no other SE). I spent my time during treatment working on letting go of my frustration at not being "seen" so that I could focus on killing cancer cells and staying well.

    I'm writing this because my experience was so different from what I had come to expect. I could have been better prepared, and managed my expectations better. More importantly, I would have been ready to advocate for myself - and WOULD have done so more strongly. I hope others won't need to - but if you need to - do it!

  • dancemom
    dancemom Member Posts: 407
    edited June 2022

    Don't be afraid. Make a comfortable routine.

    Hardest part was losing the 2 hours a day. Commute is about 45 min each way, get there 15 min early to check in and change, 15 min treatment. 34 treatments.

    I am very fair and have many allergies and hypersensitive skin (seams give me a rash). My facility provides Calendula cream. I broke out in a rash, so they gave me Radiaplex which I applied 2x a day plus once a day aquaphor. When the tiniest hint of burn showed after a couple weeks, I was given silvadine to add 2x/day. When the itchy blisters arrived at 6 weeks I was given steroid cream. I had a small amount of peeling under my armpit and, on my chest, and particularly the area that had boosts on my sternum. But nothing major. Was told to continue using the Radiaplex along w silvadine until my post check up and steroid as needed. I am 7 weeks out and use only the aquaphor now.

    I always brought the radiaplex (and later steroid cream) with me and applied it immediately after treatment as I got dressed, so I wouldn't forget. Then again when I got home from work with the silvadine. And the messier aquaphor with silvadine at bedtime.

    I also asked the techs to tell me when to stop my big breath in. At the mapping, I kept taking too big a breath, and it was hard to line it all up. Once they started with "take a deep breath, ok that's good" I was able to get through each blast on the first try each day.

    I did take cat naps, but I'm on Ibrance too (was off for surgery and rads) and the chemical fatigue is much worse than radiation fatigue. I have continued working at my very physical job through every thing except 6 weeks off for mastectomy recovery (I started paperwork once drains were out at 2 weeks)

    I am having problems finding sunscreen that I can use on the treated area now. So far, each kind I try gives me a painful itchy rash, a "super sensitive" baby one made me blister all over much worse than radiation!!! Going old-school with high neck t-shirts and an umbrella for now. Not looking for any fashion prizes with one real and one 1/2 sized TE.

  • Blinx
    Blinx Member Posts: 82
    edited September 2022

    I've been using Aquaphor but dislike getting it all over my hands. I searched Amazon for "ointment applicator" and just ordered a "Dr. Talbots Silicone Diaper Cream Brush with Suction Base." Don't know why they call it a brush -- it looks like a small rubber spatula. I'll let you know how it works.

  • Blinx
    Blinx Member Posts: 82
    edited September 2022

    I just received the applicator and it's a game changer! I can slather on the thick goop and my hands stay clean. But I don't think you need to order anything special -- a small kitchen spatula (the size for cleaning out jars) would work just fine. I also got a large jar of Aquaphor. The tube was just too difficult to squeeze! I had to bend it in half and press it against the counter to make any come out! Now that I think about it. I should just cut off the top part so I can use up the rest. Live and learn.

  • starsnow77
    starsnow77 Member Posts: 55
    edited January 2023

    I applaud all of you who have bravely walked down this path. This all is overwhelming.....but I am learning. I had my CT scan and I guess mapping? I have stickers on my chest and look like a little kid attacked me with a sharpie. I broke down in tars when they started to take off the jonny..I was embarrassed and there was a male tech there along with the lead? female. She was perceptive and got a towel and covered me as best as possible. It helped.

    I asked about the machine and they she showed me. What a HUGE scary looking contraption...and that huge thick door to shut the room...dinly lit....seeing that and hearing I will have tattoos (tiny dots) to mark ? I feel like I've stepped into a george orwell, twilight zone, mystery science theater show. It's unnerving.

    Nothing has been said about lotions or clothes or anything...so I am going to follow what you guys are saying......maybe I'll learn more at my next appointment, this coming thursday the 12th. They said it will be a longer appointment. and with different techs. Sigh I am getting tired of everybody seeing my boobs. And they took a picture? yuck.

    I could not do this without knowing and respecting that you have walked this road before me. I guess I am honored to be part of this group. even if the situation is so very sad.

  • sweattl
    sweattl Member Posts: 2
    edited March 2023

    Hi Starsnow77 - My hubby and I still laugh about how I got used to just whipping out my boobs for anyone. It was awkward at first with anyone, then with just males...but then it was just the norm. Radiation is a huge drag but I believe it helped get me to my 9 year survivor anniversary. Let me know if I can be of any assistance.

  • pinkrules
    pinkrules Member Posts: 107

    This was so helpful. I bought the Genie bras, removable inserts were great. My radiologist office is now recommending this bra. Very inexpensive too as three come in a package. I also used Aquaphor all over my breast, even days before radiation began. It helped tremendously.

  • shrinkrap59
    shrinkrap59 Member Posts: 41
    edited January 14

    Good evening buddies! Thanks for taking the time to be here.🩷

    I have three questions;


    1) Is there a way to bookmark? I am still working my way through 2015.

    2) How far is too far to drive for 5 days/ week for four weeks? I have a choice between a better facility with the rest of my treatment team, 45 minutes away, and a facility about 30 minutes away. BOTH seem too far! I'm retired now, but used to drive 2 miles to work.

    3) At my first lumpectomy post op last Monday I was told I had a seroma and hematoma, and that radiation would have to wait until they resolved, and to apply ice 6x/day . Has anyone heard either of these things before?

    TIA