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Starting Radiation December 2021

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AMG2
AMG2 Member Posts: 90

I haven't seen this yet, and will delete it if there's already another one, but I'm starting radiation Dec 14, 2021. Got my tattoos and mold made today, and my protocol will be 16 days plus 1 mock. Christmas Eve and New Years Eve are off, so I should be done the first Friday in Jan.

My worries:

Burns - I've always been afraid of burns.

Caring for burns - my center doesn't use Mepitel. I was hoping it did. Should I just get some and use it except for the actual radiation?

Dressing - how do I wear clothes that won't rub?

I guess I'll just see how it goes.

Editing to add that I came really close to just bugging out on the whole thing - lost my composure completely this morning on the way to the simulation and had to pull over and have a good cry. I don't know why radiation scares me so badly. Fortunately, cancer scares me more, so here we go.


Anyone else starting in Dec?


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Comments

  • txlorelei
    txlorelei Member Posts: 68
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    My simulation/ mapping is scheduled for December 7. The RO won’t commit to the number of treatments until after that. Due to the large number of positive axillary nodes I had, she may need to zap the remaining nodes in my clavicle and neck areas.

    It would be great if I could finish by New Years but I’m not holding my breath.

  • mle42
    mle42 Member Posts: 124
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    Hi there! I started today, so most of my treatments will be in December. 33 sessions total, finishing up Jan 17. TXLorelei, at first I had been hoping to finish before Christmas, then I was hoping to finish before New Years, now..... I'm pretty much at peace that it will take as long as it takes. (That first bill in January will be an eye-popper though - I'm on a high deductible insurance plan but hit my out of pocket max for 2021 way back in June so have gotten very used to "free" treatments, LOL)

    AMG2, good for you for showing up to get 'er done even when you're scared! I think we all need to let ourselves lose it every now and then, this is a damn tough road.

  • txlorelei
    txlorelei Member Posts: 68
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    I had my mapping yesterday but due to the holidays and other scheduling issues I won't have my first treatment until January 3. So 30 treatments means I won't finish until Valentines Day.

    I tried to find a comfortable position for my right arm over my head, but it still fell asleep by the end of the mapping session. I hope it doesn't happen every time.

    It's a good thing I'm not claustrophobic because they had to fit a plastic mesh cage over my head to keep my neck area completely still. It started out warm and drapey and then hardened as it cooled. It's so tight I can't really talk while it's on. There's just a nose hole so I can breathe. I probably look like a villain from a superhero movie.

    Good luck to everyone.

  • AMG2
    AMG2 Member Posts: 90
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    Wow, Lorelei, yours sounds much more intense than mine. My arm did fall asleep for my mapping, but I was told that probably won't happen for anything but the first run which will just be a mock run and take a long time.

    Even though you're not starting til Jan, you're very welcome to hang with us in this thread; I think the holidays mean we will mostly all be here into Jan, and I'm always happy for your companionship.

  • AMG2
    AMG2 Member Posts: 90
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    Mle42, how are you faring? I hope things are going well.

    I'm getting a bit nervous for Tuesday's start.

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    i had my simulation today. Requested no tattoos and everyone was like “you’re responsible for taking care of these marks. If you lose one, we have to start over.” I don’t care. Didn’t want tattoos.

    Not sure when my official start date will be after the planning, but presumably in December. Treatment plan is moderately Hypofractionated 14 sessions and five boost sessions. The RO recommended Aquaphor as the lotion, which I have to keep away from the temp marker and stickers.

  • AMG2
    AMG2 Member Posts: 90
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    SO78, I don't blame you one bit. I didn't want them either, but was not given a choice. They are very small, but still, I am extraordinarily anti-tattoos-on-me. I'm very glad you were able to not have them.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Hello!

    I just had my simulation on December 3 and will be starting radiation on Monday December 13. The plan is for me to have five sessions of accelerated partial breast radiation over five days. I am a little nervous because the earlier studies showed worse cosmetic outcomes. My RO says that the cosmetic outcomes are better now than at first, and my goal is to avoid the heart area as much as possible to avoid cardiac toxicity. And of course, the convenience of getting it over with in one week is appealing.

    The simulation was fine, I felt like I was in a sci-fi situation, with the breathing tube and exercises, tattoo, etc. The staff was so kind and respectful that I tolerated it very well. As far as tattoo, they did not give me a choice, so I have accepted it for what it is. Hopefully the side effects won't be too bad. :)

    Good luck everyone!


  • mle42
    mle42 Member Posts: 124
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    AMG2, I'm doing well so far, thank you for asking! Just got home from session #8, no ill effects so far. The skin on my side and under my breast may be starting to get pink, but it's still faint enough that I wouldn't notice it if I wasn't looking for it. No fatigue yet.

    The treatment sessions are indeed MUCH shorter than that initial mapping session, not enough time for any limbs to fall asleep on me. Less than 10 minutes on the table each day. Even with my head turned to the side I can see my reflection in the beam-shooter-thingy, and it shines a light on the part of my body that is being targeted. I keep myself entertained by watching the shapes of light change as first my neck/clavicle is zapped, then a few different shapes to get the whole boob and internal mammary nodes, then it rotates around to a different angle I can't see to hit my armpit. There's a little buzzing noise during each radiation delivery, and I think to myself "take THAT and take THAT you stupid cancer cells!" LOL.

    TXLorelei, yikes, the head cage does sound claustrophobic, I'm very glad I don't have to do that. They just tell me to turn my head to the side and apparently that is good enough.

    SmoothOperator, I'm glad you were able to stick to your choice and not get tattoos! I kinda didn't want them, but also didn't want the stress of trying to keep stickers on through 6 weeks of showering/lotioning, so when I found out that my RO's office prefers tattoos I didn't push back. When this is all over, I might look into having the dot between my breasts laser-removed. The ones on my sides I have to make a real effort to see even when looking in the mirror naked, so I don't care about them.

  • AMG2
    AMG2 Member Posts: 90
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    Hi Mockingbird! Next week is it for the two of us. I really hope you end up mostly unscathed by the end of the week. The 5 day regimen - yes, it is appealing, you'll be over by xmas which sounds so wonderful; but yes, it also scared me. The 6 week regimen seemed impossible for me psychologically - just way too drawn out, so the 3 week was the one that I felt I could handle. Best of luck to you. I'll be thinking of you on Monday and all through the week. Do keep us posted if you can and feel like it.

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    Sadly, my effort to have no tattoos may have failed. The third night after the simulation with these stickers, I woke up this morning and looked in the mirror and found that the middle sticker had transferred to the other breast while I was sleeping.

    I didn’t wash. Didn’t lotion. But cleavage defeated the sticker. I am so disappointed.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Hello AMG2,

    I am ready to start my first session today at 3:00 pm. After discussion with my RO and his nurse, I am feeling more confident about my choice of APBR over 5 sessions for a number of reasons. I am at a facility that has the latest technology, they are using IMRT, Intensity-modulated Radiation Therapy, to customize the shape to conform to the tumor bed and vary the intensity of the beams. This will minimize exposure of healthy tissue, organs, and skin to the radiation. Still a bit nervous but I know I have a great team of doctors, nurses, and staff plus a top-notch facility. I did have to travel 8 hours from home and will be staying in a hotel for 5 nights to accomplish this. The area in Tennessee where I live does not have newer techniques available plus they have not recovered very well from Covid and are very understaffed.

    I am grateful to qualify, one has to be in early stage and over 50 among other things. Also, happy that I have good insurance coverage that approved this approach. I was hesitant to do radiation from the start, so I think this is the best fit for me. I will let you know how it goes.

    Good luck to you AMG2, please tell us all how you are doing as you proceed through treatment. Best wishes!!!!



  • AMG2
    AMG2 Member Posts: 90
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    Best of luck to you today, and for the rest of the week, Mockingbird! I'm so glad you're feeling confident in your protocol and team, but wish you didn't have to be so far from home; that's a bit rough. I start tomorrow and am trying not to be too nervous (it isn't working, lol!). I did order some Mepitel and am going to use it at all times except during the radiation. I think it should still help the skin, as I think radiation damages DNA, and the skin problems come both from that and attempted repair. I have aloe, Aquaphore, and shea butter at the ready, too. Anyway, I'll do the best I can, and hope any residual cancer cells get wiped out.

    SO78! I'm so sorry! I was really hoping for no tattoos for you. Stupid stickers. My steri-strips from port placement and surgery were still firmly affixed to me the day I started chemo - exactly 5 weeks post surgery. The infusion nurse removed them from my port incision. Seems like they could use glue like that for the radiation stickers. If it makes you feel better, they really are very small and pale. Two of mine bruised fairly intensely, and I thought they'd be far worse than they are, but without bruising, and with my terrible eyesight, they're not bad at all. And we can laser them off when all is said and done, and I probably will because I want as few reminders of this ordeal as possible.

  • lw422
    lw422 Member Posts: 1,404
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    AMG2--regarding Mepitel; it has a fairly sturdy adhesion so I wouldn't think it would be a good idea to be applying/removing it frequently as your skin gets more fragile. There is a spongy type dressing that some people use called Mepilex, and there seems to be some confusion around the two. Mepitel is a clear adhesive bandage type thing; I had one applied mid-chest and I did not remove it during rads. The rad techs did change it weekly as instructed by my RO, but it was stuck so well that I wondered if it should have been left alone.

    I apologize if I am telling you something that you already know, but I see some posts that seem to be confusing Mepitel and Mepilex. Good luck to you and I hope your treatment goes well.

  • AMG2
    AMG2 Member Posts: 90
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    No, I did not know, and thank you! I did order some non-adhesive stuff, so I'm hoping it is the right thing. Really appreciate the info, and I'm sure others do, too. I do have several other tools in my arsenal, and will likely end up using whatever combination seems the most likely to help and not cause further damage.

  • lw422
    lw422 Member Posts: 1,404
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    You're welcome. I hesitated to post because I don't want to seem to be a know-it-all, butting in to tell people what they already know.:biggrin: I found the Mepilex to be almost useless; it doesn't adhere well at all and is difficult to hold in place.

    Many people had Mepilex bandages after surgery and they seemed to be held in place by the surgical ointment or mastectomy bra. They are a pain to keep in place. They are beige colored and "spongy" material.

    Mepitel is transparent, sticks quite well and was a bit difficult to peel off, at least on me.

    I hope your treatment goes well and you have minimal SEs.

  • qkalake
    qkalake Member Posts: 10
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    Hi all. Had my mapping and start in Jan. Was sad to hear about forcing tattoos SO78. I had rads 12 years ago, kept the tats and now have had second lumpectomy and second radiation starting in Jan. Same breast. They used the tats as markers on the mapping only because they were there, but don't do tats anymore. Are others finding this to be the case?

    Also, has anyone had a second lumpectomy and second course of rads in the same breast? Not much out there on this type of treatment.


  • AMG2
    AMG2 Member Posts: 90
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    Hi QKAlake, this is my first go-around, so I've got no experience to help you out here. I'm really sorry you're having to go through it all again, but welcome to our thread - we'll walk through this together.

    Just had my first real zapping today. 1 down. 15 to go. I don't get why I hate this almost more than chemo. It's so much easier and faster, so I feel like I should be happier, or at least less negative about it. It did go totally smoothly. Shrug. I guess my attitude needs adjusting.

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    i had my first treatment today. They didn’t end up tattooing me. They put on a fourth sharpie X and sticker to cover it. It was so easy, but keeping Aquaphor away from the tape will be hard (especially when sleeping).

  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Hi Everyone,

    Three down and two to go! With the five-session course, it is going pretty fast. Everyone involved with my treatment is super nice, it doesn't actually "hurt" but I too am finding this step challenging emotionally. For some reason, it just makes me sad and after the first session, I had a little cry. I am doing the deep inspiration breath hold, with the breathing tube in my mouth, a clip on my nose, arms up with a button in one hand, and the other on a bar. It's a rather strange feeling, but not painful. The room is dim with glowing lights around the ceiling which is very calming and helps one relax to stay still. I receive a comparatively large dose of radiation per session, very little side effects yet, just some tingling and warmth inside the tumor bed only, as it is partial breast. I am told that any skin changes will happen next week, after treatment, and that I should be recovered by Christmas or shortly thereafter. I hope so!

    Anyway, after the "zapping" tomorrow morning I have a relaxing massage session at the facility that is complimentary. I am really looking forward to that. :)

    All and all I have plenty of energy, walking between 2 and 4 miles a day, and enjoying city that I currently am visiting. Energy runs out very early at night and I need to rest and sleep longer. So far so good!

    I hope everyone else is doing well.



  • AMG2
    AMG2 Member Posts: 90
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    Hi SO78 and Mockingbird! I'm really glad it's going well for both of you, and there were no tattoos, and MB is almost done, that's so great!

    Mockingbird, big hugs for the emotional aspect. It probably doesn't help that you're away from home and doing this basically alone, but being almost done is good, and I'm so glad you're able to get some exercise. Mine is currently consisting of snow shoveling - it sure did dump here last night - knocked one of my pines down.

    LW422, I'm so grateful for your input. It's wonderful to have the experience of those who've been through this before. I don't like doing things blind. I like having a bit of a road map to tell me what might happen and how to help with the unpleasant stuff, as well as how not to help with the unpleasant stuff.

  • cowgirl13
    cowgirl13 Member Posts: 778
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    Mockingbird, I was considering the 5 day APBR when I had rads in 2009. My radiologist was all for it but I decided against as I was HER2 positive and couldn't find any stats for a HER2 cohort. I'm really interested to see how it will go for you as I had considered it very strongly. I really don't know why more people don't have this type of radiation--is it because it needs different equipment? Congrats on your 1st session over!

  • AMG2
    AMG2 Member Posts: 90
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    Waves to Cowgirl13 - Hi fellow triple positive! My center doesn't seem to do the 5 day plan, but yes, I had similar desires and similar thoughts of why it is maybe a good thing that my center doesn't offer it. Right now - I really wish I had that option and that there were good studies to indicate it is effective for Her2+ because I would jump at it. I've only had the 1 session, and I'm already turning red and was pretty nauseated all yesterday afternoon. I was thinking having this done over Christmas and New Years was a rotten thing, and now I'm thinking maybe it's a good thing - gives me 2 long weekends for a break. Got #2 coming up in 2 hrs.

    Love and hugs to all.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Good morning, all!

    I just completed session 4 of 5 and I am feeling fantastic! I think that is because I am prepared and know what to expect, etc. Also, I received a complementary full body relaxation massage afterwards, so I know that has contributed to my wellbeing for sure. It was interesting as this therapist was trained in anatomy and understands cancer patient's needs. He explained that they do not do deep tissue massage but only relaxation massage that gets your blood and lymph flowing and the parasympathetic system is calmed. If you are able to find someone appropriately trained, I highly recommend. I've only had a massage a couple of times in my life, but I think I will try to do this more often if I can.

    Hi Cowgirl,

    I do believe special equipment is needed for this APBR and maybe special training as well. My treatment is also IMRT (Intensity Modulated RT) so a lot of planning goes on in preparation. The beams are concentrated to precise area and contoured to the tumor bed with computer guidance. One of the main reasons I wanted to do this is to avoid the heart, lung and rib areas if possible and it does lower the exposure. I have heart disease in my family, so I try to be proactive and offset genetic predisposition. I tried to find this option in my region but could not find anyone who could do it, and many hadn't even heard of it. I am being treated at a facility with cutting edge technology. They have been doing this for a while and have published studies. I also am aware there are restrictions on who are candidates for APBR, over 50, early stage, node negative, size, etc.

    Hi AMG,

    I can't imagine so shoveling snow right now. Take it easy and don't overdo it! Sending you hugs.


  • cowgirl13
    cowgirl13 Member Posts: 778
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    AMG, before I started radiation, they asked if I wanted to do it after xmas or the holidays and I thought to myself 'bring it on!' as I hate the holidays and I knew it would take my mind off of them. I started my rads 12/21/2009 and they were a piece of cake really. I did the shorter protocol of about 19 days. Didn't burn or anything but I did slather on Aquaphor all the time. How many rounds will you have?

    Mockingbird, you lucky girl with your 5 rounds. If you don't mind me asking, where are you having your rads?

    Ladies I have just one suggestion here...be sure and drink lots and lots of water. Good luck!



  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Hi Cowgirl!

    I had my last RT session this morning….Woo Hoo! A little pink but surprisingly few if any side effects. My energy has been high and I walked a lot each day. I have been drinking a lot of water, thanks for the tip, and moisturizing too. May have some issues next week, will let you know.

    I have been at Cleveland Clinic in Ohio. Could not have been more pleased with everything I’ve experienced there. Truly patient centric!!! On the way home back to Tennessee. next stop, medical oncology and Arimidex!

  • cowgirl13
    cowgirl13 Member Posts: 778
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    Mockingbird - you go girl!

  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Hi AMG,

    Just checking in to see how you are feeling. Hope you are resting and relaxing this weekend. Take care!

  • smoothoperator78
    smoothoperator78 Member Posts: 72
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    Finished 7/15 fractions (plus I have 4 boost sessions after that). No side effects so far. It’s been quick and easy (and I continue to be able to avoid tattoos even after the one sticker had issues). Using Aquaphor at night is all I’m doing (so far).

  • Mockingbird114
    Mockingbird114 Member Posts: 17
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    Glad things are going well for you Smooth Operator! Best wishes for your remaining sessions. :)