Starting Radiation in July 2019
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GiddyupGirl yes I will take the minions! Yesterday was day 5/20. It was the first day I looked sunburnt (very clear to see where I am being radiated now) and I felt quite tired. I worry about my skin if I'm so pink already but I'll just have to wait and see. I am following all the advice - water and lots of midaderm + aquaphor.
I do find that taking a walk or getting some exercise late in the day helps me, when I can make the time.
Today I feel better. And I am SO GLAD to have the week-end "off." Cheers to you all.
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Calli0p3 - can you use Mometasone Furoate cream, perhaps? It's a prescription steroidal cream used to fight many allergic skin reactions, and also has research backing its effectiveness in reducing skin SE's from radiation. My RO prescribed it and I'm using it twice daily, in conjunction with 3x daily Miaderm (which I know you said you can't use).
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JLall - are you lubricating a few times a day? Maybe try adding 100% aloe vera gel to the mix that you are using?
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Hi GiddyupGirl
It’s good to meet you. I started rads last week. I also need the five boosts on top of my twenty full breast rads. What are the boosts like? I imagine you are either just starting them? Look forward to comparing notes. My first rad was June 21. It hurt as soon as I finished the radiation. Through to my back. A very bad but sharp pain. No pain on the skin just yet. I have small breasts. Wondering if this is why. The pain lasts only around seven hours then slowly goes away until my next rad the next day. I have twenty more radiation sessions to go.
Hope you are well.
Sincerely
Star
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Good morning all! I've been lurking for a while but not posting. I just finished #9 of 20 whole breast. I was thankful for my weekend break, as I was very sore Friday. My skin was a little pink but not much, and my soreness seems to be more internal ache than external skin issue, although my nipple was very sore. My whole breast is just sore - it hurts to turn over in bed. I'm concerned that if I'm this sore now, how I will I make it to 20? Argh!
Minions! Love it! I have to do breath holding for my treatments. For the long one (probably about 45 seconds), I close my eyes and go to my happy place - diving on a beautiful reef with an octopus, a giant grouper, a hammerhead, a school of squid....... It's over before I know it. But now I will add minions to the mix
Question - does your back itch? Mine has been driving me crazy. I can only think maybe it's getting scatter?
Hugs to all for peace and healing.
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SJWhitten, there is no way I could hold my breath for 45 seconds! I hope there are other options, if that's what they want me to do. I have my initial consult with the RO next week, and I know it sounds silly, but holding my breath is the scariest part to me.
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BAMR - If your radiation center is like mine, they will totally work with you! I get zapped from two machine positions. The first one is longer than the second one; the second is maybe 20 seconds? But they told me when I did my setup/simulation appointment that if I couldn't hold my breath for the entire time, they would spit it into two (or more I guess) zaps in the same position. They have me take two deep breaths first, then I hold the third breath. You can practice it at home. Make sure your breaths are long, slow, and very deep! You might surprise yourself! In between breath holds, make sure you take long, slow, deep breaths as well to prepare for the next breath hold. And for me, it really does help to go to my happy place in my mind. Find yours and do a detailed visual image in your head. It's a great distraction and makes the time fly. Good luck to you! You can do this!
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DorothyB- yes I am - 3 or more! Miaderm + aquaphor. I do have an aloe plant and can try some of that. After the week-end my skin looked better (more tan than burn) but back to pink after treatment today. Thank you.
Also started to experience some shooting pain last night through today. Manageable but there.
BAMR - I was nervous too but it's been fine. In my trial run I had to hold my breath for a long time (they want to see if you can) but in the actual treatment I feel like I have barely just begun holding my breath and it's already over - I would swear it's less than 20 seconds in one position and ten seconds in another. They will work with you! SJWhitten has good suggestions. A long slow inhale both calms me and helps me hold my breath.
I asked some questions about the boosts today, for myself. It is a lower level of targeted radiation. Doc said not everyone gets them but because I am young (46), with 2mm margins, and DCIS is often in multiple foci (i.e. it can skip cells and in fact did so in my breast), they recommend I do them. Makes sense. He said chance of side effects from rads is not likely to go up doing those extra sessions, as the bulk of radiation will be in the first 16. He also said the boosts lower my chance of recurrence minimally (maybe 1 or 2%).
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Hi Star 111 nice to meet you too although sorry for the reason we are both here. I am at 20/25 tomorrow plus I still have the boosts to go. Will let you know how much fun that it is. I have gotten the pain too from day 1. Best advice wear a sports bra even when you go to bed. And it sounds ridiculous but one night I was really uncomfortable so I gently held my bonfire boobie ( it actually worked). Beck itches because rads going through there so moisturise it too. What are you using for creams (i use Miaderm and it really helps expensive but the girls have lots of suggestions on the board) Put your moisturiser in the fridge it feels great to cool down a hot painful boob). Moisturise even though your skin is still good it will help and drink fluids lots of them. Keep in touch if I can be of any help feel free to pm me.
SJ - the back itch is scatter moisturise there too. Sounds like you have a great team to work with. Keep on trucking.
Bamr - not silly to worry about holding your breath - was the scariest for me too and I snorkel and scuba. But really the longest I have had to hold it is 23 secs, almost wish they would let me hold it longer so I could get out faster but oh well. I got the snorkel and nose plug to take home and I practiced you will do great and it really helps with your singing if you like to sing. Its more boring than anything. Good luck and let us know how you're doing. Feel free to use my minions (earlier post).
JLall - glad you're doing well. My boob feels somewhat fried (I have done 19) but I took a day off today so I had a long weekend and it looks better. I so get the pain (if you had a lumpectomy are you wearing a sports bra cause it does help) Also gentle stretching helps with the ouchies. My RO said that it is usually because rads are annoying the nerves. Good Luck and keep moisturising, hydrating and lots of protein.
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Hey Kyber GenX and Julie - hows it going. Hope you are all well with minimal side effects and lightly pink skin to keep your ROs happy. hope you all had a good weekend.
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Question: I'm doing my CT and set up next week. I asked the nurse yesterday about contrast for the CT and she said I don't need it. I'm glad of that, but I haven't been able to figure out why some people need it and others don't. Anyone know? Thanks.
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In case this is useful to you guys going through rads now. I'm a month out and still wear a bra to bed. My skin is fine, it's the residual swelling and incredibly tight pec--when my boob flambe shifts, that pulls the pec and that wakes me up.
I see my RO today for the final follow up (I think it's the final one but hey, never did BC before so I could be wrong) and I will ask her about the pec tightness. I'm curious how long to expect this to continue. It's been bad enough that I've had to stop in the middle of my runs until my arm no longer hurts (and no, it's not my heart, it's clearly arm and pec related).
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I was told the period you could possibly see an INCREASE in tightness was the 6-8 week out mark. In between that time period your muscles and tissue can still decide to continue to tighten and whatever else those little Minions desire. Like its been said before...the gift that keeps giving. Ugggh.
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Ugh. That's good and depressing to know. You might not know this but I have the patience of a gnat.
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Hey. Hope everyone is managing OK.
I've developed a bit of a cold. Sore throat, slight cough, low grade fever. I'm hoping it's unrelated, but I'll be sure to mention it to my RO this week.
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Hi Mountain mia I checked today about the contrastand my RO said it is not usually done for the rads CT's as they are only looking for the position of organs like your lungs heart and boobs so no need for contrast - hope that helps.
Kyber I am sorry about the cold thing - drink lots of oj and anything else with vit c even though you cannot take a supplement. Hope you feel better soon.
Re: tightness - my RO said gentle stretches during rads helps - wear a supportive sports bra (says rads damage tissue body makes fluid to fill in and that causes swelling compression takes the swelling down and helps move out the fluid faster. (really like my RO smart and patient lady even when I asked about boob shrinkage) Also told me that as soon as my last treatment is done massage the scar tissue areas with Bio Oil and it will soften up. Hope this info is helpful.
CAlliop3 got answers for you but will post on thread where you asked your question.
Be well lovelies
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Just saying hi to everyone.
I am at 6/25. I've been actually feeling better with less headaches, skin looks normal so far. I don't know if it's related, I think it is, I developed mouth sore, just one for now but it's been bothering me.
Kber - hope you feel better soon!
Edj3 - thanks for your bra comment, it's a nice reminder for me. I've been swollen for so long after mastectomy w/reconstruction and have been very uncomfortable with my subpectoral expander, but I got better and stopped using compression bra for the last couple of weeks. I probably shouldn't be doing something I might regret later.
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Hey. My cold seems to have subsided, but I think some fatigue is kicking in a bit. At first I blamed an intense work week, but after 2 good nights of sleep finally, I am actually more tired.
I'm 13/25 so half way! At least it goes fast.
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Kyber glad your cold is better and congrats on being half way. I found the fatigue not just related to sleep. I have been trying to find a solution to it. Only thing that seemed to help is down something really high protein (I did over 20g at one meal) sit for 30 min. and then move. Seemed to help. I managed to work till 930 last night and was still good to go till about midnight. Hope you find your energy mojo. How is your skin holding up so far.
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Skin is fine so far. Maybe a little pinkish blush. Maybe not. Depends on the light. But no soreness. My RO is changing the pattern a bit next week to "crisp up the skin a bit". I had a skin and nipple sparing mastectomy and, as he said, we aren't trying to irradiate the implant". He wants to make sure the skin, as one of the original bits I've got left, is getting its far share of attention.
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smart RO he doesn't want the skin to feel left out. I'm at 23/30 now and nice and red but still holding on. I didn't get really red till the end of last week (so 19/30). Hopefully you will be pretty in pink. Have a great weekend.
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Hi everyone. I'm at 18/21. I am red/tan with dermatitis. I started boost treatments at 16 and now am noticing that my armpit is becoming red. I'm not sure if this scatter or from the boost. I see the RO on Tuesday. Has anyone experienced this?
Thanks.
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Shadow63 - I had 20 total radiation treatments with the last 5 being boosts. The area just under my armpit continued getting redder for the last few boosts and for almost a week afterwards. No pain or open wounds. Be sure to lubricate it a lot.
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I'm at 23/30 - the last 5 are boosts. I have had lymph nodes radiated as well (clavicle as well). Tech said nodes would not be done during the boosts, I am hoping they are right because I am red. At this point my boob could replace Rudolph's nose and since its not christmas yet my poor boob will be unemployed.
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kber - sorry for asking, why they want your skin to be crisp? I was thinking that there's nothing wrong with not being pink in the end of radiation therapy and it would be more of a nice bonus?
Giddyupgirl- love your sense of humor, let's hope you "Rudolph situation" will be over way before x-mas and you boob will remain unemployed!
I am at 9/25, at this point I am light pink and sore, and the whole area feels tight, I am trying to do those post op exercises religiously. Fatigue is there, but I've had a very busy week therefore I won't blame just radiation.
A few months back when my mastectomy was done I was coping relatively well. Now with pain, tightness and some swelling I feel like I am somehow back to those early post op days again and I've been struggling emotionally.
Hope you all have a nice and relaxing weekend.
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hi Julie. My PO explained that since I had a skin / nipple sparing BMX with tissue expanders, he wants to make sure we are getting the skin especially. I suppose some pink is evidence we are hitting the target adequately.
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JulieSim - I am 13/20 done. You described my feeling exactly - I am back to post-surgery SORE and hurting. Mine is not really skin issues - it's more inside - like it felt a few weeks after my partial mastectomy. I'm back to sleeping in my bra, but I feel like I should be leaving my skin uncovered. My skin seems to be holding up fairly well - maybe just a tinge of pink. My nipple is swollen and VERY sore.
Hugs all!
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SJWhitten , just finished at the end of June and I'm still wearing a bra to sleep in. Things feel better when my breast doesn't shift at all. My skin was never terrible, more of a bad, red rash and my nipple hurt too. Wearing a bra kept my nipple from getting rubbed by anything.
Now I've found that my left pec (radiated one) is super tight even though I do all my exercises, my armpit too. I've tried twice going w/o a bra at night, and the discomfort wakes me up. I'm sure it's a combo of scar tissue and that tight pec. I'm not a large busted woman (30DD) so it's really not that I'm boobalicious anywhere. It's more that everything is so much happier when absolutely still.
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I finished my 20 treatments (15 regular + 5 boosts) on July 23rd. My breast is almost back to pre-radiation normal as far as swelling, pain, discomfort. Still reddish, but that doesn't bother me. Not wearing bra at night any more.
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edj3 and DorothyB - Thank you for the info and encouragement. I have 6 more treatments. I will just take it one day at a time
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