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Starting radiation March 2022

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Hello everyone. I started this thread for everyone beginning radiation in March.

I will begin next week. I know it won’t be like what I have already been through but I’m still a little anxious. I have read through all these threads and hopefully I have correct moisturizers to hopefully keep my skin healthy. I am concerned. I was also told to drink a lot of water.

I would love to get to know some more of your so that we can go through this together. Sometimes it helps just having someone to talk to.

Hugs to everyone. I am looking forward to getting to know all of the March rads group.

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Comments

  • quietgirl
    quietgirl Member Posts: 165
    edited February 2022
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    Thanks for starting. I have my planning/simulation appt on Monday and will be starting about week after that. 3 weeks whole breast followed by 4 targeted sessions, so 19 total is the plan. I have a mammogram on Wednesday. RO wants a picture post lumpectomy (DCIS) Apparently they gave me a spot that is usually held in reserve for the surgeons, I'm assuming they know no one is likely to need it. I'm okay going on two different days if it helps moves things along

  • loverofjesus
    loverofjesus Member Posts: 174
    edited February 2022
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    Welcome quietgirl. Looking forward to getting to know you. Looks like yours was caught really early which is so awesome!!!

    I have bought some moisturizers that were recommended to me and was told to start now. I have simulation on Tuesday and rads start on Wednesday.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022
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    hi. I have my scan on Tuesday. Then I start on March 10. 34 total. 26 chest wall and nodes, then 8 more targeted to intermammarary nodes and sternum. I have super sensitive skin, but was told they will give me the necessary creams. So far in all my treatments, I have been provided with all necessary products to start.

  • quietgirl
    quietgirl Member Posts: 165
    edited February 2022
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    dancemom that's great they give you the creams. One less thing to have to think about.


    loverofjesus I also got a list and coupons I don't know the last time I used a paper coupon. I picked up some dove sensitive skin soap which was recommended (and by picked up I mean added to my mobile grocery store order which I drove to pick up).


    Yesterday at the end of the appointment the radiation oncologist told me she thought this was the straightforward consult she had done in 7 years. I don't know if she thought I was going to be reluctant or something and I get when others are. It is a lot of information to process all at once and everyone's path is different. I am just at the point where I feel the sooner I start the sooner I know how my body is going to handle it


    On a completely unrelated note, as I was waiting to be called back, a woman came out and said/ shouted MY PORT IS OUT. I gave her a little cheer. Everyone else was silent 🤷🏻Apparently she was going to eat some cheesecake to celebrat


  • LizzyLizzy
    LizzyLizzy Member Posts: 8
    edited February 2022
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    Thank you for starting a March 2022 group!

    I have my radiation consult on Monday 2/28. I'm curious to find out how many sessions I will need, when I will start radiation and what I can do to make this go as smooth as possible. I am nervous since I burn very easily in the sun. I know fatigue is a major side effect but I hear that nausea can happen. When I asked my oncologist about this he assured me that nausea won't be an issue.

    I'm so glad to have support from others also going through this part of treatment.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022
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    I am gearing myself up to feel similar fatigue to when I'm on Ibrance. (On a break now from surgery and now radiation.)

    Lizzy, I burn in the shade too! But mostly, everything gives me a rash.

    I haven't been given any creams yet, but it was mentioned at my last appointment. There is a pharmacy on-site if I need to get it myself. Honestly, so far I am much more anxious than I need to be. They actually do let me know what I need or need to do, just not as ahead of time as I'd like. I am expecting some cream info at my first session I guess. Trying to be patient.

    This whole process has been so unnerving because I like to be prepared and with BC that’s just not possible. Every plan I had since March 2020 hasn't happened. Between BC and covid, I am stuck. Even when there seem to be little windows of opportunity to visit family, suddenly new scans, new treatments. Looking forward to finishing this round of therapy!

  • mfk
    mfk Member Posts: 35
    edited February 2022
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    Hi friends - Best wishes for an easy experience with radiation. Don't assume that just because you're a sunburn waiting to happen that it means that you'll have a bad reaction to the radiation. It's such a random experience and you're never really sure if your results have anything to do with what you did along the way. I was very diligent about hydration. Did it help? I have no idea, but it's healthy in any case and substituting water for wine certainly helped me shed a few pounds during my three weeks of dry January. Also increased the protein in my diet and diligently applied the creams. Never felt fatigue and only had a wee bit of pink on my skin. You just never know.

  • sondraf
    sondraf Member Posts: 1,616
    edited February 2022
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    Alright, I start on Tuesday for five breast sessions, after completing 5 SBRT to L3/L4 last week. Its really hard to moisteurize your back! But I slap on the E45 cream with abandon twice a day and hope for the best. I had some nausea by the end of the week, and REALLY needed a nap on Thursday, but other than that it was fine. Note that the nausea was likely driven by where the beam was directed, and it passed by today at any rate.

    Of course the Tube drivers union agreed to full strike action Tuesday and Thursday this week so the entire network will be down those days, and will have knock on effects for Wed and Fri. WHYYYYYYY. Instead of a 35 minute door to door journey it will be 1hr+ and a couple of overpacked busses each way in crawling traffic. Often these strikes get called off last minute but who knows. Between this and deadlines at work its gonna be a looooonnnnnggg week.

  • dancemom
    dancemom Member Posts: 404
    edited February 2022
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    oh sondraf, I'm sorry about that commute!!! I go completely across town. Subways, while amazing for many trips, only travel in the heart. Closest is a 20 min walk for me. Bus or walk to cancer center are about the same 40 min, so it depends on how my feet are feeling. But when the subway isn't running, OH BOY does everyone feel it! I hope your commute is resolved quickly!

  • quietgirl
    quietgirl Member Posts: 165
    edited February 2022
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    simulation today. First session is 3/9. They apologized because they are so booked my appointment isn’t till 5. (That’s actually after the office officially closed). But I’m very happy with the time because it means no time off from work (I have less than 3 days off left so the less time I take the less unpaid hours I will have. But I know that I will be moved to an earlier time eventually but if it’s at 5 all next week I’ll be happ

  • spades2525
    spades2525 Member Posts: 47
    edited February 2022
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    Hi everyone! I had my mapping done a week ago and will start 20 radiation treatments on Thursday. I have a tub of Glaxal base ready to go and have been told I’ll be applying a saline solution at least three times a day. I’ll do whatever I can to try to minimize the skin reaction to the radiation. Would love the option for a reconstruction if the skin holds up and there isn’t too much scarring. I’m feeling nervous about the size of the area being radiated. They’re going above my clavicle and on the neck to get those lymph nodes as well as under the armpit.

    A long commute would really suck for these treatments since they’re pretty short in comparison to chemo! Ugh

  • LizzyLizzy
    LizzyLizzy Member Posts: 8
    edited March 2022
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    I had my consult this morning and they were able to get my mapping done as well. I was there for over 3 hours and there was so much information to process. I did break down emotionally as they went over the side effects. My oncologist estimated that I would need 20 sessions(PCR at lumpectomy, lymph nodes were clear) but the radiology oncologist suggests 30(25 and 5 boosts) since my cancer was grade 3 and HER2 positive, HR negative. I feel like I’m in good hands but I am so nervous. It sounds like they will be monitoring my skin/symptoms as I go and will have creams/meds that will help. My first session is 3/9 I am so glad to have this group for support.

  • Bianca1007
    Bianca1007 Member Posts: 1
    edited March 2022
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    Hi everyone! I think I will be starting WB treatments sometime in March. RO is sending my lumpectomy tissue off to DCISionRT for analysis to see if I will benefit from radiation therapy. Has anyone else had this test for DCIS cases? With my grade 3, there is only a 30% chance I won't benefit from radiation, so I am mentally preparing that I will need it. Results will take about a week.

    Wishing everyone good luck!

    Bianca

  • sondraf
    sondraf Member Posts: 1,616
    edited March 2022
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    Ok, first one down. Took a bit longer than a spine shot - more positioning and the beam moved into three different positions. They also flopped a bolus on me, which kinda felt like being covered by a large mouse pad. Overall was all ok.

    Commute took 1h45 each way in the rain (yeah, we ordered pizza tonight) but the route was good so when this happens again on Thursday I know what Im doing. I also had PT afterwards (took myself to lunch inbetween) and oh my god, three minutes of her pushing cords out of my arm! So painful! Ive got great range of motion but the forearm just didnt look 100% - glad I went! Ive got more sessions with her over the next two months, but she promised this was the worst to start breaking it up.

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    Sondraf sorry your travel time was so long but glad you were able to figure it out. I’m hoping that the strike is resolved by Thursday so you don’t have to do it again but very glad that you have a workable plan if you need to.


    I’m waiting patiently for the 9th to get started. I feel like I’ve gained 10 pounds since this started (of course it doesn’t help that they take my weight at afternoon appointments at least that’s what I tell myself

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    sondraf PT is so good! I hope transit is resolved soon. BTW, I was very happy when the NP told me today that any possible fatigue is generally nothing compared to the Ibrance Fatigue! And the radiation doesn't affect the white blood counts. I am excited to keep having this energy! Not exactly my pre-cancer levels, but so much stronger than when on the Ibrance. I am still afraid of how long I've had to be off it for surgery and all these treatments though. Mixed blessings with the life saving stuff I guess.

    Quietgirl between lying around with drains, having restrictions on excersise, and stress eating...its not a good combo over here!

    Had my planning today. Tech wrote down in notes to tell me specifically "ok, hold it there" as I was taking my breaths TOO big. They did give me a cream and said to ask them for more as needed, use plenty. The tattoos look like blackheads 🤣. After I painstakingly entered each of 34 treatment dates/times into my phone last night, today they gave me an updated schedule that starts FOUR days later! Gotta go redo my calendar 🤨

  • Buzzer
    Buzzer Member Posts: 9
    edited March 2022
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    Hi!

    Thank you for creating this topic!

    Seeing radiation oncologist on Thu and will likely start next week.

    What are the questions to ask during first appointment for those of you who went already?

  • sondraf
    sondraf Member Posts: 1,616
    edited March 2022
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    RE: weight gain and fatigue - boy don't I hear that. I use exercise to work out emotions and with the vertebral rads they said no to spin bike for three weeks and Im really unhappy about that. Walking doesnt do enough for me at all. And I've been strangely hungry all the time during radiation, though I wonder if that has to do with the stress of going in day after day or current work stress. This is different fatigue to Ibrance fatigue, its not the bottomless pit of Ibrance fatigue but more a light coating and only on a few days. Next drug causes similar fatigue to Ibrance but with no breaks so trying to enjoy this break, if only work weren't being such idiots!

    Buzzer - I would ask about the area expected to cover, the goals of the treatment, and potential side effects and their experience with other ladies undergoing the same treatment in terms of commonly seen side effects. Some get them worse than others but for the most part it looks like breast rads are pretty well tolerated by most. Usually its the nurses at the planning sessions that go over the practicals of creams, positioning, the machine, etc.

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    buzzer— it's honestly okay if you don't ask anything or if you think of questions later on (they will normally give you some method to connect someone). I only say this because you are probably going to get tons of information. And you might get handouts and information to read as well. So if you forget to ask something or think of something later that's okay too. If you have a question you know you want to ask write it down and bring it with you. Don't be afraid to pull out a piece of paper.


    Has the mammogram the RO wanted me to get before radiation starts next week and I took two things away from the experience. Apparently my incision looks really nice (I think this is the 4th person who has commented on how good it looks it's starting to get a little weird). Second I never know how to answer the question is that too tight. I mean what is my frame of reference. I'm being squeezed between plastic plates, sometimes it's just uncomfortable and sometimes it hurts but how tight does it need to be for the picture you need to take. If you need it as tight as possible just take the picture so you can release me from this machine.

    Starting in a week. Wish it was sooner so it could end sooner but at least there's a plan that I hope doesn't hit too many snags along the wa

  • spades2525
    spades2525 Member Posts: 47
    edited March 2022
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    I had my first session today. They tell me it was a longer session than the rest of them because they had to double and triple and quadruple check the positioning. I will admit I found the position I had to hold pretty uncomfortable borderline painful at times. It was so frustrating to know that I could just stop it from hurting by bringing my arm down to my side, but of course not being able to move a muscle. Challenging. My treatments also include using the bolus like you Sondra, which I was told will increase the chances that I will have skin issues. Time will tell!

  • sondraf
    sondraf Member Posts: 1,616
    edited March 2022
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    Spades - yes! I read about other ladies saying "oh its five minutes in and out!" and for me it feels like it takes 15 at least because I get squished around a bit,they do the little tape measure several times, take a photo, check, then take the xray, check, bolus on, first shot of 40 seconds, machine moves, second shot of 40 seconds,bolus off, machine moves, 40 seconds in the final position. Im also at a teaching hospital so today someone was learning and being checked/shown. Thats ok because how else are people going to learn, but it took an extra ten minutes at least.

    Thankfully todays appointment was early afternoon so my commute was a little over an hour each way despite the strike and I saw all sorts of cool things from the top deck of the bus including the most British thing I have ever seen (funeral director in formal dress suit and top hat with a walking stick marching slowly in front of a hearse and then holding out the walking stick to block traffic so the hearse could cross lanes). I have seen several horse drawn funeral carriages in the East End, but I wasn't expecting to see this in the middle of a busy area.

    Just tomorrow and Monday to go!

  • Buzzer
    Buzzer Member Posts: 9
    edited March 2022
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    Saw the Radiologist oncologist today. 16 sessions plus 5 boosters. Prep session on the 8th and start 16th - scheduling was difficult and this is already annoying me as I have work and children so would rather have the full schedule now by they do week by week only....

    Potential side effects explained and aside from what I read everywhere, was told not to use Aluminium based deo for the weeks when I am doing radiation as can cause more skins reactions.

    Crossing fingers all goes well!

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    spades—tech told me my first session would be 45 minutes and that I might want to take some Tylenol before hand. I'm trying to imagine what my arms will feel like driving after 45 minutes to that position.

    sondraf—-glad your commute was less today and that you found a way to enjoy it but hoping that's the end of striking works while you are in treatment

    Buzzer—I understand your frustration. I try to remind myself that for the scheduling people it's like putting together a puzzle based on peoples needs but it still annoys me that I only know my first appointment time. I at least wish I knew all of next week so I could figure out if I need to go in early Mon. and Tues. so I use less sick time on Thurs. and Fri

  • gonegirl
    gonegirl Member Posts: 1,022
    edited March 2022
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    Hey, anyone willing to talk about having sbrt. I am going for simulation next week and was told I could be in mri for 2 hours. Yikes. Plus, was told treatments themselves take a bit longer. Very scared. This is to treat a spot on the 9th and 8th ribs that are close to the spine. Help.

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    about the arm position. I know we are all positioned differently, but I have been very actively stretching, particularly after my TE fills, plus working with a PT where in addition to teaching me the exersises she also stretches and massages the muscles affected my the mastectomy. I was pleasantly surprised that my arm is placed in a holder that is higher than my body, so it didn't feel stretched. Only my neck from keeping my head turned in an awkward way was a bit tight after simulation.

    It was very hard to find a PT who specializes in breast health, but SO worth it! She does lymphatic therapy and massage, scar mobilization, and all the manipulation to regain movement.

  • Jamoon
    Jamoon Member Posts: 6
    edited March 2022
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    Hi I started my first radiation session on March 4th. When I had my consult with RO was told I will be having 21 sessions but after the mapping was done my sessions changed to 29. With my consult with RO was told to buy Galxal cream to be applied 3 times daily or more. Was also given a saline solution recipe to make to be used (was advised to used it daily starting after a few sessions. Was also told to wear very loose fitting tops.


    Good luck everyone who started alre

  • Jamoon
    Jamoon Member Posts: 6
    edited March 2022
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    @buzzer I was told no deodorant or anything scented on the side of me that is having radiation.also no shaving or waxing.. was also told to have an unscented body wash/ soap and shampoo/ cond




  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    gone girl—sorry I don’t have any experience in the type of treatment you are getting. I can’t imagine having to stay in one position for that long but I’m hoping that they are giving you the worse case and that it’s not quite as long. I will be thinking about you. Please let us know how it goes.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
    edited March 2022
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    Hi Everyone and nice to see you again, Spades!

    I started my radiation on 3/3 and have now completed 3/33 sessions. Seems like I need to change my lucky number or avoid 3 from now on, depending on perspective, LOL! My rad onco is super laid back and has been through breast cancer as well as shingles (which I am STILL dealing with since 12/31/21). I've had quite a bit of pain from the get-go but we don't know if the shingles after-effects is what is causing it; that is painful in its own right. If it gets worse, she is going to recommend an epidural nerve block. The sessions are easy and quick and so far, no creams are necessary, but we'll see how long that lasts!

    One interesting note, the onco told me people with darker skin tend to have more burn effects, as well as people with larger breasts. Seems backwards, but that's what she said.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited March 2022
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    I finished my 5 of 28 rads today. I’m doing good over all. I feel good over all. I have been through so much. Like many of you my biggest fear is recurrence. My oncologist said he would like to do some baseline CT and bOne scan after radiation. He said there is no reason to believe he will find or see anything. He just wants it as a baseline. But most of the people I know have not had anything after treatments unless they had symptoms. I’m kinda curious about any of you. What has your oncologists said??