Radiation May 2019

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Barbjc
Barbjc Member Posts: 28
edited September 2019 in Radiation Therapy - Before, During, and After

Hi all!

I began radiation today, wanting to connect with others beginning this month to compare treatment recommendations and progress...assume there are lots of you out there!

I had a bilateral MX Feb. 2018 with reconstruction. I had DCIS with microinvastion. Turned down tamoxifen due to uterine cancer running in my family, but thought I'd be ok. I found a small pea size lump March 2019 and had it removed, turned out to be DCIS again so I'm doing 6 1/2 weeks of radiation!

Since it's on my left breast, they are having me do DIBH (deep inspiration breath hold)..where I take a deep breath in and hold my breath during treatment to avoid exposure to heart and lungs.

When I did my first treatment today, they used a Bolus over my breast. They said it will deliver more focused treatment to skin area...anyone have that also? I needed to stop googling because all I'm finding is that it makes skin irritation worse, ugh!

They are also putting me on the med Singulair to help prevent capsular contracture with my implant. Hope it works.

Trying to stay positive but afraid of bad skin reactions, arm cording coming back, and messing up my implant.

Day one done! Peace and gentlehugs to all,

barb:)

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  • spiralforest
    spiralforest Member Posts: 31
    edited May 2019

    Hi Barb! I just started radiation yesterday. I had pain yesterday evening in my breast (interior, not from the skin) and was disturbed by this and also felt pain in my stomach and was sort of disoriented a few min. after my treatment. But the pain was gone in the morning and I feel totally fine today. No skin irritations either. The technician told me that some people experience interior breast pain while others don't. I'm glad it didn't return today as it was not nice to start the first day of it with pain with 20 more to go! I actually cried on my way to my treatment today as I felt like I dreaded doing it again, if it was already bad on the first day. Yesterday I also felt like my treated breast was hot, but today, I don't notice this. I feel totally normal. I wonder if my body sort of "adapted" to the treatment.

    I'm doing 16 full breast and 5 boosts.

    How do you feel now, Barb, after 3 treatments? I don't have a Bolus. I haven't heard of this before.

    By the way, I didn't realize this was for May radiation in general (and maybe others did the same), so you may want to change the title to just be "Radiation May 2019" like the other monthly posts as the way it is makes it seem like a specific post to just your issue.

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Hi there and thanks for your reply!

    Good idea on changing the topic name except I have no idea how to edit that! Let me know if you do. I finished my third day of treatment today and so far so good ...I've been slathering Aquaphor on my boob all day long and I am also using a steroid cream they gave me. My arms and hands completely fall asleep and go numb when they are above my head during treatment and I am on the table for about 20 minutes since they are doing x-rays every day and I'm using that deep breathing technique because it is on my left breast.

    I guess that bolus is to keep the treatment toward the skin surface because I have the implant underneath… And yes I do experience that hot feeling once in a while on my skin... but I've been working out and doing yoga… No problems… When I do wear a bra I put a couple of those breast-feeding nursing bra liners in there because I have Aquaphor on!

    I will be doing 33 treatments total… 6 1/2 weeks… It would've been 4 1/2 weeks but since I have the implant from reconstruction they are giving me less dose each day for a longer time period!

    Stay in touch and good luck tomorrow...

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2019

    Barbjc, I too had the deep inspiration breath holds because my tumor was in my left breast. I'm almost 10 years out from rads and no problems with my heart/lungs. Glad to hear you are using lots of Aquaphor--I slathered it on about 3 times a day. I wasn't working so I was able to go without a bra and I just wore big t-shirts.

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Cowgirl13.. so good to hear that you are 10 years out with no problems! I just cringe when I hear that radiation machine go on because I'm afraid it's going to damage my heart and lungs… So thanks for your post ...

    and that's what I have on right now a big T-shirt no bra and Aquaphor slathered so it's kind of sticky

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  • spiralforest
    spiralforest Member Posts: 31
    edited May 2019

    Can you not change the topic with the edit button under your message? I am not sure as I have never started a topic before, so I have never tried it. I use Green Beaver Day Cream for my moisturizer (it's Canadian). My dr. said to just use any cream that doesn't have a fragrance in it. He didn't have any specific ones to recommend (I asked). I also have some pure aloe vera.

    I work from home, so I can go braless too (also helps that my breasts are small).

    Although my treatment is on the right side, I still worry about my lung. They said not to hold my breath though. But they did tell me that a small part of my lung is still exposed to the radiation.

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Spiralforest...nope I tried hitting the edit button but I can only edit my post not the topic name, oh well… Technology!

    I also have smaller breasts...I had the bilateral Mx with reconstruction but I did not go very large...about a small B cup.. my biggest worry right now is what the radiation is going to do to the tissue surrounding the implant... I have to be doing several gentle breast massagesdaily to keep tissue moving so we'll see

    well let's get through this together !

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2019

    Welcome, Spiralforest! We're so glad you've joined our community, and we hope you find the support you need here as you continue with your treatment!

    On a side note, we noticed the conversation around the topic name change, so we went ahead and changed that for everyone :)

    The Mods

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    big thanks for changing that

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  • Laurenashley18
    Laurenashley18 Member Posts: 3
    edited May 2019

    hi all! I just started Monday and find that I’m a little nauseous and fatigued. I’m just wondering if this is all in my head or am I really having these side effects. I’m not dealing with having radiation very well. I think I took having chemo better. 27 more treatments to go! I hope all is well with you guys

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  • Haliday
    Haliday Member Posts: 38
    edited May 2019

    Hello, all. I start 16 rounds of radiation on Tuesday, May 28. Left breast and lymph node area. Started slathering Eucerin already with plans for thrice daily when treatment starts. I practiced the breath holding at my simulation. Will keep you informed of progress and side effects. Here we go! Live your life. Live your life.

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Laurenashley, nothing is in your head, maybe the nausea was from feeling anxious about the first treatment...glad you are better now !

    Haliday... I slathered lotion on my boob for weeks before radiation also we'll see if it helps!

    Just finished my 4th treatment and it seemed shorter this time maybe I'm just getting used to it… I don't leave the treatment center until I slather the steroid cream all over and then when I get home I put more Aquaphor on and I sit topless at home as much as I can! ha! Or i just go braless with a big tshirt on that is getting Aquaphor stains on it!

    Whensleeping, are you all wearing a bra or going braless? trying to figure out what's best .. Right now I have a very comfy bra while I sleep and I slather on the Aquaphor and put a gauze pad over it, but wondering if the pad is soaking too much of the Aquaphor and I should just go braless...it just feels so sticky to sleep though

    good luck to all, we can do this!

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2019

    Barbj, I would suggest going braless in order to receive the most aquaphor.

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Thanks Cowgirl13, I will try sleeping braless tonight with a big tshirt on

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  • purplejc5
    purplejc5 Member Posts: 30
    edited May 2019

    Hello Ladies;

    I started my radiation on May 16th, so I’m 6 treatments in. So far so good. Just waiting for the other shoe to drop as far as side effects go. Tech said it probably won’t happen till the 8th-9th treatment. I’m putting on Aquaphore, sometimes Aloe Vera gel (if I can’t stand the stickiness). I’m doing whole breast, 16 treatments with 4 boosts. Let’s all hang in there together. This too shall pass

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  • mom2-3girls
    mom2-3girls Member Posts: 4
    edited May 2019

    I just completed radiation 22 of 38. I feel nauseous after every treatment and on and off during every day.

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  • SLLO
    SLLO Member Posts: 16
    edited May 2019

    I will be starting radiation in a week or so after having had a bilateral mastectomyabout a month ago. My question to you experienced ladies is should I start putting cream on the area now? I am reading about calendula cream, aloe, emu cream, miraderm and many others. I think I will need to narrow all of this down. Anyone have favorites? The radiologist said any cream with steroids.


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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    SLLO,

    Since you just had the bilateral MX a month ago, maybe ask your surgeon about what creams would be OK to put on, unless you are all healed up. I started applying aloe two weeks prior to radiation every day and every night…

    I am a week into radiation and now I use aquaphor and a steroid cream ...I apply Aquaphor in morning amd throughout day and at night...and I put the steroid cream they gave via prescription on right after treatment.

    The Aquaphor is super sticky so I don't wear a bra most of the time and I bought some cheap oversized camisoles that I wear (will toss when done since aquaphor stains) and then a oversize shirt over that. When I go to work I actually do wear a bra but I bought some nonstick pads that I put inside my bra to help with Aquaphor stickiness.

    Not the most comfortable but not forever!

    Do you have expanders in or did you opt for no reconstruction

    good luck and hang in there

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  • Kstinekd
    Kstinekd Member Posts: 40
    edited May 2019

    Hi All. I started my first of 25 radiation sessions on May 16, so I have had seven so far. During every other treatment they put a plastic mold of my chest on top of me so that the radiation hits the skin. They gave me calendula lotion. I went through a whole tube of it in one week so I stocked up on more. Don't forget to lotion up your back as well! My treatments are on my right side and it is now definitely pinker than the left side already. I'm also trying to be patient as I wait for my hair and nails to grow out post-chemo. It's been a wild ride so far. Wishing you all well.

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  • SLLO
    SLLO Member Posts: 16
    edited May 2019

    Barbjc

    I opted for no reconstruction. No more surgeries for me. This one was bad enough. I will try aloe cream first. Thanks for the suggestion. Do you put the Aquafor on before the radiation. It sounds like you do.

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    SLLO...

    Nope I don't put the Aquaphor on right before radiation. They told me not to put anything on two hours prior to the treatment... last week my treatments were at 8:20 AM so I would go right after I showered… Next week (and until the end), my treatments are going to start being at 3:40 PM so I will probably have Aquaphor on from all day putting it on, but i won't put it on 2 hours prior.

    good luck and stay in touch

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Kstinekd,

    I have that chest mold thing placed on top of my chest during radiation also ...they told me it is called a "bolus" but I have it on every time ... they told me it helps target the dose closer to the skin where it needs to be… I am hearing that it can make your skin get more irritated, nothing so far on me but it's only been 5 treatments...

    What is this about putting lotion on your back also! ? thanks for the heads up because nobody told me to do that ...are you getting red on your back also?

    Hang in there, we all got this

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  • Barbjc
    Barbjc Member Posts: 28
    edited May 2019

    Mom2-3girls,

    Sorry that you are feeling nauseous, that's hard to deal with. 22 treatments done though, you are more than halfway there! Is there something they can give you for the nausea? I haven't felt any nausea yet but I've only had 5 treatments

    Mylast day of radiation is July 3… What is everybody else's last day we need to start a countdown! Hang in there everyone

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  • Haliday
    Haliday Member Posts: 38
    edited May 2019

    3rd day of slathering twice a day with Eucerin in anticipation of Tuesday’s start. 16 treatments so last day will be June 18th.

    And cream on cancererous nreast1/2 of back? What works best?

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  • Notgivingup
    Notgivingup Member Posts: 144
    edited May 2019

    Hi All!

    I started radiation on May 20th so I have done 5 treatments so far. I am doing a total of 20 (16 treatments and 4 boosts). I use miaderm-l and pure aloe vera. My skin seems to be holding up really well. I am in the prone position (on my stomach) for treatment. It really only takes minutes for my radiation. I laugh with my techs that it only takes 2 songs and I am done. I should be done on June 17th.

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  • Kstinekd
    Kstinekd Member Posts: 40
    edited May 2019

    Barbjc, I read about putting lotion on your back on another forum. One woman lotioned her front and not her back and her back became painful. Apparently the radiation travels through you. Yikes! I did not have clear margins so they are trying to target the skin with the bolus (I had never heard of that term before). In the Fall I will have another surgery to remove the skin. The breast surgeon and oncologist originally recommended the removal of skin now and then have radiation. But then the plastic surgeon said that he didn't want to have them radiate the new skin (ew) that he was putting on, so he requested that I do radiation first. I hope it's the right sequence. Fingers crossed. I think it should be interesting after they remove the skin to see if there are still active cancer cells or if the chemo and radiation knocked it all out.

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  • Ldrumm65
    Ldrumm65 Member Posts: 6
    edited May 2019

    Hello -

    I will be starting radiation on my left breast sometime in June hopefully after finishing chemo in April and having lymph node surgery in May. I had a double mastectomy in November 2018. I also had breast cancer on my left breast in 2011 and was diagnosed with DCIS. I opted for a lumpectomy and radiation then. This will then be my second radiation. My skin tolerated the radiation pretty well the first time around. I am a little scared at what this second radiation is going to do to my skin. My doctor told me to use aloe vera on my skin. He was talking about during treatment. If I could, I would like to put something on my skin to prepare it for the second radiation. Is there anyone here who has gone through radiation twice? Thanks!

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  • Haliday
    Haliday Member Posts: 38
    edited May 2019

    3rd treatment today. For the first time, got a twinge of not quite pain but a tingling. And had a short wave of nausea that lasted an hour or so. Could have just been hunger (or looking at my phone in the car).

    Positioning takes longer than I expected. . .I am glad they are perfectionists about millimeters but my hands fell asleep yesterday. I hope this goes a little more quickly for my arms’ sakes!

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  • spiralforest
    spiralforest Member Posts: 31
    edited May 2019

    Just updating on my experience with this. I've done 8 treatments so far of full-breast radiation, so I'm half-done now with that as I have 16 treatments (then 4 boosts afterwards). I have a break today as they are calibrating the machine. I had pain the first day (in the evening), but not after that. The nipple seems sensitive and the breast sometimes feels a little hotter than the other one and firmer. I don't have any changes in the skin. I use cream by Green Beaver which is aloe, plus other ingredients (no fragrance) just after treatment and before I got to bed (and twice per day too on the weekends). Basically, I still feel normal with a tiny bit of over sensitivity in the nipple. Hope it stays like that! Fingers crossed, knock on wood!

    With people who are having nausea afterwards. I didn't have that, but I had a weird feeling and stomach pain right afterwards ONLY on the first treatment. I now make sure to eat 1.5 to 2 hours before the treatment and not closer than that and never had a stomach issue again. Not sure if that is the reason or not, but I think having a full stomach could possibly affect how you're feeling afterward. Although Haliday, it seems you said you were hungry, so you must not have eaten right before it.

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  • chantalbe
    chantalbe Member Posts: 51
    edited May 2019

    I started radiation therapy on May 2nd.  I have finished 20 of 25.


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  • Atl1967
    Atl1967 Member Posts: 7
    edited June 2019

    Good luck to everyone with their treatments! I have had 6 of 16 (plus 4 boosts) so far. Seems as though everyone has their own favorite cream and I have had lots of different ones recommended to me. I asked the doctor about them all, and they said they had done a study and determined that the low dose steroid they prescribe has a very good track record in preventing significant sun damage. I put it on after work and in the evenings, and then, since my treatments are in the morning, I wash it off during my morning shower. The doctor did say to put it on my back if I saw any signs there (freaky to think of the back getting burned!). I have very sensitive skin and developed a very painful rash after my surgery so am quite nervous about what will happen.

    I experience a sort of mild disorientation after each one - very, very slight, but noticeable. It wears off during the day and I don't have it on weekends. The first night I also felt shooting pain in my breast, which the nurse termed "zingers", which I think is a perfect description. I mentioned this to my doctor (hugely empathetic wonderful woman) and she said it made sense I would feel both the disorientation and the shooting pain as the radiation is doing damage to your body. She thought the zingers were nerve endings. A week later I saw a different doctor, and while he did not dismiss me, he essentially said it was psychosomatic (male. . . draw your own conclusions). The zingers have not occurred every day and when I massage them, it helps.

    I also had it on my left breast, and I do the breath hold. I have a great deal of anxiety about holding it long enough, but the technicians are all super nice. I made it a point of learning all of their names (not a strength of mine) as a little bit of a game to distract me and it's worked - I like greeting them each morning. I also do minimeditations to help.

    The nurse and doctor told me fatigue would not hit, if it does, until two weeks in. I have a lot of work events coming up, so am a bit nervous about that. Trying to get lots of exercise.

    I spoke to one woman who said, "I didn't have any fatigue at all!" from her radiation - and then she told me later she went to bed at 8 p.m. every night! We should all give ourselves lots of grace - seems to me this is like a lot of things where our bodies will all experience it differently.

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