January 2018 RADS group
Comments
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Thanks for the responses, & I'll let you know what I learn tomorrow. I'm not going to be in a trial as far as I know, and this second RO is supposedly the guru of breast cancer radiotherapy for our area. I feel fortunate and grateful, it's just the quick switch in plans that has me unsettled.
I hope all of you had a great day
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DownNotOut, it could be your MO is recommending partial breast radiation instead of whole breast radiation. I looked into it but was told it is best for large-breasted women, which I am not! The idea is that you radiate a smaller area, which is safer especially if your BC is in the left breast, near your heart. The only downside as it was explained to me is the possibility of a poor cosmetic outcome.
Here is some info. The treatment is twice a day for five days:
https://www.astro.org/News-and-Publications/News-a...
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Down i have never heard of 5 treatments either, i am doing 16 regular & 5 boosts. That would be great if you only did 5 & worked just as well as doing a heck of a lot more treatments. I agree with Paulette trust your MO & if you can let us know how it goes.
Paulette I do not have LE & am hoping to avoid it. I know its a crap shot we have no clue who ends up with it or not unfortunately I got measured for a sleeve & to be honest have not had that great of luck finding a soft one as the compression i was assigned was 15 to 20. I know I should wear it to exercise & when I'm doing repetitive tasks with my arm. How are the rads treating your LE?
Ladies I find that if my cream is a bit cooler not room temperature before i apply it on it soothes my skin & feels good.
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PVM, i got my sleeve from the hospital store, brand name is Medicean Harmony and it works great for me. I had mild LE and I got rid of all my fluid before radiation. Now I am doing my manual massage hope I can kick LE. Hahaha just hope I don’t have to do that many PT after radiation.
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Well ladies tomorrow i shall be half way through my rads & have 10 more to go. I can hardly wait to be done in January. I am a bit worried as next week will be my last week of regular rads as the last 5 are boost. So far so good on my skin, the techs keep on reminding me to moisturize & work not cream into my skin but not too hard to damage the skin.
Paulette thanks so much for the info on the sleeve will look into it. I am glad that you are doing okay & the SE are not too bad. Sending positive vibes your way & also hope you can kick LE In the butt. Lets hope that 2018 starts off as a no LE future, we can always wish right
have a great week ladies.
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I started on Dec. 18...no side effects yet...only on #9. I was told that toward the end skin irritation and fatigue will set in but nothing like chemo.
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Fatigue actually started for me, I have been taking nap almost daily and it is nothing compared to chemo time. I still have energy to do my daily 40 min walk so I am not going to complain.
Khunter my RO told me to watch for the last two weeks, I just finished 3 weeks have 3 more weeks to go. Skin turns pink not red yet. With this three days rest coming up it really helps.
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I started radiation on 12/18/2017 and as of today this is my 7th, I will have 20 total. The holidays have messed things up a bit. My skin is doing well so far, keeping my fingers crossed.
The only issue I'm having is insomnia, it started soon after I started radiation, so tired but looking at the clock every half hour until I get up at 3:00 am. Annoying that I try to nap but no luck. I think I've seen every Hallmark movie so far.
Any suggestions?
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hey everyone. I start on 1/4. I went to my initial appointment yesterday and got all set up. I’ll be doing 20 sessions at this point. I just want to be done with this. I came home with my boobs all marked up. That is so not sexy. I’m struggling with the way my breast looks. It makes me cry. Very overwhelming. Sigh.
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Tigger that's a shame that you suffer from insomnia I know when i was first diagnosed I could not sleep either & bought this tea from David Tea called mothers little helper, it's herbal & actually would relax me & I would fall asleep. Another suggestion would be a warm barh/shower before going to bed.
Paulette & Khunter let's hope we continue to kick butt & by the last 2 weeks do not get to many SE. I don't have fatigue yet but I'm sure that will hit in by next week.
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PVM beside fatigue I lost some appetite also, only three more weeks to go much better than chemo.
Tigger - if the tea doesn’t help maybe you can ask your RO or MO give you a prescription of Ativan so you can sleep better.
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Hello everyone! Glad I found this group. I start radiation therapy on 01/11. 20 sessions total. Looking forward to finishing this phase and starting hormone therapy. Just hope SE are not that bad. Wish you all good luck and a 2018 full of health and good news!
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Welcome Bea45! I started rads last week, and completed 4 accelerated treatments. I've had some internal aches, and so far no skin issues, but its early. I've chosen not to do chemo, Onco 19, so after rads I too will start hormone therapy.
Wishing all of us a happy healthy new year!
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Happy New Year!! It's great to have some time this morning to catch up with you & meet some new ones as well.
I met with the 2nd RO last Thursday & I did really like her & I'm going to go to the university for RADS now. She said I was an obvious candidate for hypofractionated course of 20 plus boosts to the tumor bed (50Gy total). I asked her about the 5 day that my MO mentioned in that strange conversation we had (that prompted me to cancel my simulation with the 1st RO) & she said not for me. But Georgia, it was so helpful to have read that link you sent me last week so I was better informed for the conversation. This new RO also wants to do a MRI to check me for any other subtle cancers in both breasts since mine are described as DENSE on mammogram. I said "sure"! So my new plan is MRI on Thursday, simulation this Friday, and rads to begin after that, maybe next week. I said I was concerned because the first RO wanted to begin radiation within eight weeks of LX, but she reassured me that with my early stage we had up to 12 weeks with no real worries. I'm trusting that she is right and this additional delay will not matter in the end.
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Good morning DownNotOut. That sounds like a great plan and I'm so happy that you feel like you are in good hands. I think the MRI is a great idea; it was a spooky, loud procedure but short and really not bad. And I feel good knowing that I have a baseline report in the files since I'm only 59 and get to look forward to many annual check-ups in future.
Happy new year to everyone and best wishes for treatment to fly by and a great 2018!
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DownNotOut i am glad you went to get a second opinion & are very happy with your new RO that is very important that you feel comfortable with your treatment. Also its a great idea that she has suggested an MRI, like Georgia said its loud, usually lasts about 30 mins & usually they give you plugs for your ears. If you have never had one done the machine can seem a bit intimidating but its all good especially if it can check to make sure your all good.
Happy New Years ladies wishing you all the best in 2018 may it bring lots of wonderful blessings & health. For those that are starting rads good luck ladies the 1st one it not so bad, usually lasts a bit longer as they need to fix you & sometimes take scans of you prior to getting rads. Don't forget to moisturize even though your skin may not feel sore or dry. I have done 10 so far & have another 11 to go & so far my skin is holding up good. No soreness or redness yet. Good luck ladies & lets have a great rads week.
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Hi there. I am IN!
Tomorrow is my planning session. I have been pushing this out of my mind and now that 2018 is here all these emotions are flooding in. I have to remember to breathe deeply and that I will get through this just the way I got through my diagnosis (shattering), core-biopsy, surgery, and healing from surgery. I am 61 and have noticed that I get tired during the day even before starting radiation so I am apprehensive as to whether I will be able to have the energy to resume the activities I put aside while healing. I know that being active is important to my psychological well-being and I never do very well in January. I am affected by Seasonal Affective Disorder and try and use a special light but I haven't kept up with it.
I think this group is a wonderful idea. I think those of us going through this can be of great support to each other. I keep being told that I need to take good care of myself, but honestly all that I have been through already has left me feeling depleted. Are other people having trouble sleeping? I think the idea of a bath at night is a good one, if I can get myself to do that. Haha.
Thank you DownNotOut for starting this group and look forward to participating.
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I have completed 20 of 28. My machine was out two days last week so now I have this week and next. I'm praying it doesn't happen again because I am ready for this to be over. I was doing great until about #16 and then started getting red and itchy. I have a bolus each time so my skin is going to be more affected. I'm starting to peel now and ditched the bra. Best of luck to all who are just starting.
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I'm ready to get started 1/4/18. The thing I love about New Years? That one flip of the calendar gives me time to reflect, regroup and be open to what comes my way in the new trip around the sun. I'm really glad I found this forum, I am getting plenty of ideas and it's so helpful to be prepared, even if I have none or all of the SE I feel like I'm ready.
Thank you to all of you!
Sarah
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Happy New Year to everyone! Hope 2018 is a better year for all of us.
DownNotOut, it’s always good to have MRI, I have several before surgery, make when you feel uncomfortable when you lay down please let them know because they can adjust and put pillows to make you feel comfortable. Ask for blankets because that room is cold.
Amy, I had #16 on Friday, the burn pains started on that session skin is still good, I still have 9 whole breast and 5 boosts to go.
Smwusaf, we will share our venture of this journey.
PVM, you will finish before we do, crossed my fingers for ours sessions.
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TowardsHealth- I had a lot of trouble sleeping thru the night awaiting any results. I used that time to research info on bc treatments. I can say that as I've started rads, I'm sleeping thru the night. If you feel tired, take a nap with alarm set so you don't sleep too long messing up another nights sleep. And set your (sad) light up by where you sit, you've got enough on your plate now so get all the light you need. HUGS!
OCDAmy- I'm hoping your machine doesn't hold you up any further! I met a woman at my rads who comes about 40 miles to the site, because the nearest machine to her breaks down too frequently. I'm with you, ready for this to be over.
Smwusaf-welcome to the group. I'm ready for any SE too, I'm lotioning up and keeping to the directions they gave me, hoping for the best. Rad #5 is tomorrow.
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Towards I’m same age with you. I went through chemo and I didn’t sleep well during AC usually woke up middle of the night about 3-4 am, I just listened to music and rest up. Sleep is important for us now, we need rest to stronger our bodies. If you needed you can ask your MO for Ativan to calm yourself down.
Tomorrow back to zapping again ....#17. So glad to have three days rest,
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Thank you Cindy and Paulette for your reassurance. I am going to ask about many of the suggestions I read about here concerning products for moisturizing and alternatives for sleep aids when I go to my planning appointment today. I think reading this thread has left me feeling more prepared for today and I thank you all. I have always been a no medication person and prefer alternatives but I recognize that now I am going to need to trust my MO and work through any SE I encounter. Sleep is so important so I will need to work on my sleep rituals and if I need help I may consider medication. I may have to let go of my distrust of pharmaceuticals, that may be the hardest hurdle of all.
You ladies are inspiring me. I am grateful. Hugs to all.
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Jinxed! I got to my 1:45 rads appt, and as I changed into my gown I heard them saying...the machine is down. Saw the Dr, then back to waiting. After 1.5 hours they sent us all home. Adding on a day to the end. But I did find out no boosts for me, so the day wasn't a total loss.
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How did it go today Towardshealth? Hope all went good with your appointments. Hope your are able to get some much needed sleep.
To those ladies starting this week good luck let us know how it goes. Stay strong & positive. It's definitely alot better than chemo & less hard on the body. Paulette my end day is January 16th & I'm so counting down. My skin so far is holding up & I have done 11 with 10 to go. I'm sure that shall end soon & my skin will start to get red. Have a great rads week ladies.
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Cindy, oh no! I hope I my down machine didn't jinx yours! I woke up with a stomach bug this morning so I had to cancel rads for today. So I just keep tacking more days on. Feeling better this afternoon so I plan on getting back on schedule tomorrow. Hoping for working machines this week
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I started radiation therapy this morning and look forward to hearing from others in this group. I was diagnosed in April, underwent chemotherapy in the spring and summer and had a bilateral mastectomy on November 21. This will be the last phase of my treatment, aside from hormone therapy.
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Hi ladies, Happy New Year to all. I'm joining from the Dec rads group. I had 4 treatments last week but the bulk of my sessions will be this month and finish up in Feb. With today that's 5 / 30 so a week down.
I met with one of my ROs today and my skin is holding up fine so far. They gave me this avocado cream (https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm...) to use 3 times a day. I ask them for more when i run out. They don't want me using anything else as they have all their patients use this. I hope it keeps working.
So today the machine stopped working when I was lying there waiting for my treatment to start. Got up and met with the Dr as it was a Dr day, but then left and had to come back. I am counting time during the zaps. 13 and a half seconds for my nodes, then 34 for my breast. Maybe tomorrow I'll count the zaps if I can figure that out. Oh the things we do to pass the time... lol.
For those of you worried about the tattoos, here's a pic of 2 of mine. I first just got 3 during my simulation, one on each side of me and one in the middle of my breasts. In my first rads session they needed to give me a fourth over my right breast to help position me under the machine. This pic shows two. I have freckles and small moles all over me so they blend in but if you zoom you can see the black dots. They're not much to look at in the grand scheme of things.
Hope everyone has a good week!
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Finished my #17/30, I was tired after treatment and lunch, I need to nap so I can have energy. Skin turned red now and I have 8 whole breast and 5 boosts to go. I know my skin will turn brown as it goes. I read the October thread I realized some of them talked about fatigue, I have to agree with them, it reminds me of chemo because even my appetite decreased.
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OCDAmy - I did think of you when my machine went down! LOL Got to laugh at something. Hope this is the only time its down, 12 more to go.
Scaligirl- I can't really hear zaps. I just hear a few clicks as I stare at a smoke detector on the ceiling, my head is turned to the right. There is music playing but with nerves etc...I only hear it towards the end.
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