will be starting soon...now I'm nervous
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okay every place is different but for example my waiting room was only radiation patients (it had 4 dedicated changing rooms). And yes while you were in a hospital gown they gave you a big fluffy robe to put over that so you were not exposed in anyway (plus you are only undressed from the waist up). (Also multiple size gowns). The pre scan planning session I just got undressed in the bathroom attached to that room ). I wore a bra my entire treatment and I think the only blistered (not even sure I can say I blistered although I did peel on the side by my arm pit) was mild. Maybe the under boob a little. Towards the very end I put soft cotton between the band of the bra and my skin. The biggest thing in my opinion is if they are telling you to moisturize the area twice a day to do and dont neglect the side and under your arm (everyone’s skin reactions differently and I know plenty of people with fair skin who did fine and then others who didn’t have fair skin who didn’t do as well). Hopefully talking to the doctor will help with some of the stress but it’s perfectly logical in my opinion to not feel comfortable with all these unknowns. After all they are unknowns and I don’t know anyone who would think that radiation is a lovely way to spend a day
As for restraints. I think that has more to do with positioning for some people than anything else. Definitely not part of my experience at all. (I was offered a warm blanket for my arms which were over my head and that helped keep them from getting stiff but it wasn’t a requirement at all).
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mollie- how do they determine that one Breast need 26 and the other 16 that is what I am trying to figure out. I am not at a big place my wait is because they are just starting up the radiation at my place I knew that going in but this is a lot closer to my home.
Starsnow77- it is a little scary at first. Just take a deep breath and move forward. I am scared also but I have already done 16 chemo treatments so I know the 1 st time is scary and then you get use to the routine and then it will be over with. You can do it!!
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For me, I was tired of being tired too, just the whole year of cancer stuff. Just wanted to be DONE.
I was not restrained. Who said that? Dr Google? You do have to remain in position, and it may not be real comfortable, but the zap is only a few minutes.
My skin did break, was a real mess. Healed quickly. For the few weeks of tx, get a Wireless soft sports type bra if you really feel you need it. No you won’t vomit. Yes, the waiting room is like any other office, and they have their own thoughts, don’t care about yours.
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starsnow77: I wore my regular clothes, including a bra, and didn't change into the upper-body robe until right before the zap session. What restraints are you talking about? I had none. Years ago, my Mom had a partial body mold she had to fit into every day for hers, but I don't know if those are used anywhere now. The waiting room at my facility was like any medical waiting room. Why would anyone.be.looking at you when they've got their own medical issues to think about? Some people blister, many don't. My skin got slightly dry in 33 sessions. Which is worse, a couple blisters or cancer?
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The only restriction I had was to stop taking any vitamin supplements during treatment. I didn't ask why. I also never heard of anyone being restrained.
I had treatment done in the prone position since the breath hold simulation was hitting my other breast, so we had to start over with the planning.
As you can see with all the replies, everyone and every center/hospital is a little different. I had long wait times. My hospital was treating close to 50 patients a day and there's 1 machine. The math just doesn't work out to an 8 hour day. My 1st treatment was at 9 pm! I went braless the whole time and wore 100% cotton tanks or tees under my clothes. My skin was a mess but it healed quickly -within 2 weeks of completing the treatment. Good luck to you.
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It was in another topic about radiation that someone said they did not want to be retrained.
I appreciate all the input Please remember It is new to me .. it is unknown and yeah, it's scary. I am still stuck in a fog but am coping as best as possible. I'm sure I am feeling some of the things "you" did when you first started out. It's been a whirlwind and the whole year has not been the best...
I hope the be able to march along this path, and then reach out to someone else who is starting out.
There is a lot to learn, alot to understand....and I appreciate so very much everyone taking time to write and offer guidance
Wishing everyone the best
Amy
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It was in another topic about radiation that someone said they did not want to be retrained.
I appreciate all the input Please remember It is new to me .. it is unknown and yeah, it's scary. I am still stuck in a fog but am coping as best as possible. I'm sure I am feeling some of the things "you" did when you first started out. It's been a whirlwind and the whole year has not been the best...
I hope the be able to march along this path, and then reach out to someone else who is starting out.
There is a lot to learn, alot to understand....and I appreciate so very much everyone taking time to write and offer guidance
Wishing everyone the best
Amy
Hello Amy, I'm sorry for the delay in responding. I feel terrible not coming on here, but I only visit every few days lately.
The only time someone might be 'restrained' in radiation treatment is if the treatment involves the brain I would think. Patients undergoing radiation to the brain have a special brace that holds them (their head) in place. My Mom had one last year when she had radiation for skin cancer in her inner ear. The didn't want her moving her head. In all of my treatments I was told to breathe normally and otherwise don't move! the reason not to move is because the radiation is targeted. It takes longer to position you than it does to take the treatment, which for me was 'maybe' 2 minutes. Most of the time I was in and out in less then 30 minutes. I mean parked, registered, changed (into two gowns, waist up), and waiting in a very comfortable waiting area, called in, set, treated, changed and back in the truck exiting....
I am finished my treatment but I have a nearly perfectly square treatment area that shows up as a 'suntan' kind of area. My skin did blister and it was itchy but only my underarm felt burning .. like more than a sun burn. I wore a soft wireless bra the entire time. I did feel quite warm some days and the 'burn' woke me up a couple of times but it wasn't horrible. In all honesty I have a theory why I had 26 tx the first time and only 16 the second. The first time in 2015 I had invasive cancer, this time, it was DCIS. First time I had the works. Surgery, Chemo, Rad and Tamoxifen. This time - surgery and Rads. it does take 10-14 days AFTER treatment ends for the effects of radiation to subside. For me, that meant my skin stopped feeling bad and I suddenly noticed a change at 10 days post final rads.
For skin care listen to your nurses. If they say do saline soaks 4x a day, do as many as you can! I ended up on Flamazine since I was working full time and going to school part time I barely had a minute to lie in bed with a saline soak on. Looking back I should have cancelled my school semester. It was all too much!! Looking back now I was being tooo stubborn. Maybe after being through everything I did the first time I thought this time would be a breeze but I also neglected my self care. Don't do that! Be well sister!!
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So.........today is the day........although a piece of cake for most of you, I am scared and am feeling very alone with this. Hubby seemed to forget today was my first treatment...so he never even mentioned it. I have no information.except what you kind people on here have told me. Nothing. Just "you'll have a tattoo"...at the end of my last session.
Nothing about what to wear, lotion, etc etc. Maybe that will happen today......
truthfully I'm ready to give up. This could be so much worse...I respect and understand that.but this pah this trip this journey is like trying to waddle along through muck and quagmires just hoping someone will toss a bit of an understanding smile.
Again wishing everyone who steps on this path for whatever the diagnosis........all teh best
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Good luck! We’ll be thinking of you.
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I hope by the time you read this, you'll realize its not the horrible experience you've been imagining. It sounds like today is the mapping. That session is long and tedious, but then it's over.
Nobody there can tell you about what to use on your skin until you've actually had some treatments. Some people need nothing beyond basic moisturizers and others need more.
Wear what you want! You'll remove your top and put on a gown or robe or whatever your facility uses. You are trying to overplan and overthink every tiny step and all you're getting is catastrophization. Please try to relax your mind.
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Harley, Thank you! It was long, my arms fell asleep, I had marks and stickers and tape and juggled and bounced and moved around. the techs started to "heavily discuss" where to put the tattoos...I could not hear their words but there was much tension....and they kept moving things back and forth on me.....all the time I was asking if I could move a bit......
to me the machine was/is scary...so I mostly kept my eyes closed.
The one tech, at the beginning, was very good when I asked her to explain what would happen and about the machine.
This is all new to me, I'm embarrassed flashing my boobs around yes even if they're just "they've seen them all" boobs... and I am sorry if I offend anyone by expressing my nervous reactions. I have little support....I am deaf so it is a struggle to lip read and understand what is happening, I want to know most things...not be led blindly... I am sorry if I seem to discount anyone elses experience by my trivial DCIS... Most of you have been so supportive but to tell someone to just relax discounts their first steps on this path and is insulting each one of us is an individual I have utmost respect for everyone going through this
I guess this is not the place for me to be. I truly hope no one ever has to feel alone while going through this...I hope your partner is supportive and understanding..I hope you have friends that will offer support as best as they can.I hope you all have someone who truly cares.
I applaud each and every one of you.....I get my information here, I ask questions based on what I learn here...so maybe it's early for lotion questions but in looking at the posts that's the info people are getting so I have a right to be concerned or wonder......
I support you all........but I guess this is not the place to find understanding
wishing you the best
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I will just share that my beginning of radiation was not a good experience at all. I had to do the mapping all over again, and in a different position. The place was crazy busy. I also hated flaunting my boobs around (again, especially in the beginning -exams and during the mapping and simulation). Finally, after about 3 weeks they gave me a schedule-which meant nothing. I would show up on time and be there somedays for hours. They also failed to tell me I'd be seeing the RO weekly during treatment. Found that out as I was running out of a treatment, and they said wait a minute, go in here and wait some more for the doc! One day they called to ask why I didn't come to treatment, and I said it's not time yet. Seems they changed my time and forgot to tell me.
All in all, in retrospect, those techs are super busy, the RO was a very smart guy, and I was well taken care of in spite of the number of patients they were treating at the time.
I too hope that once you get going, and when it's all over, you'll find it was all OK too. Best wishes to you!
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Starsnow77--I hope today went well for you. I'm sorry you feel somehow slighted by some of the responses here, but I hope you will realize that many of the people responding are carrying the same burden as you, or much worse. We are all here because we have cancer. So you might get some really kind responses and you might get some somewhat terse replies... we are all human and we are dealing with life-changing events the same as you.
I'm sorry that your deafness keeps you from understanding a lot of what is happening, but what you saw as "tension" by the rad techs was probably just them trying to determine the best spots for your tattoos, which sometimes requires quite a bit of repositioning, etc. They only have one chance to get it right so that they don't cause additional problems for you.
When I look for information, I find that forum searches and simply reading the hundreds of posts about the issues I want to know is my best bet. So I suggest simply going through the radiation threads and sift through to find answers... there are very few questions that have not already been asked and answered. It will keep your mind occupied for a time and you'll likely learn a lot more than you thought you needed to know.
My very best wishes to you. Whether we are here with the most aggressive Stage IV diagnosis or DCIS, we all know the fear and uncertainty of the Shit Sandwich that we have been served. Take care of yourself, and remember that we need your understanding, too.
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Stars - how many sessions will you be having?
Breast cancer, like so many things in life, is a case of ‘you don’t know what you don’t know’. I view BC differently now than I did two years ago since I’ve learned more about it. If they are not accommodating your hearing loss, you may be missing out on some important info.
My RO team sucked - rude, condescending and disrespectful. Were they tired and busy - perhaps, although I rarely saw another patient in the cancer center.
I am also uncomfortable exposing my breasts. I know they’ve seen it all, but that’s not the point. It’s uncomfortable for ME and there was no attempt to make me feel more comfortable. There was no separate dressing room and they used a camera to see me during radiation as the techs cannot be in room during radiation. However, undressing right in front of the camera was humiliating. As was the tech yelling through the door to ‘hurry up’. Fortunately, my MO is much better.
I may be an outlier on this forum, but I’m not a fan of the medical profession based on the number of errors I experienced during the past few years. Every center has their own protocolsso experiences will vary. Each of us has our own experience and we are allowed to feel as we do.
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Hi stars,
I've learned that every woman's reaction/SEs can be different for every treatment. You will know what you will get once you get in it.
I did not have radiation issues other than extreme brain fog, and for the last five treatments, I was ready to nap daily. I worked through all the radiation treatments. I got a triangular tan (no burning). I have heard stories from others who had severe burns. I wore a bra to work, and I took the bra off as soon as I got in the car after work. I didn't use Aquafor at all. Ultimately, I was glad I opted to do the radiation even though I wanted to pass on it. I did six weeks of it. My techs and RO were friendly and caring through it all.
I am not sure that it is any different than AIs. Some women get lucky with certain AIs, and others have severe SEs on the same AI. I think it is all a crapshoot of which way it goes for every person.
I wish you luck with your radiation. May it be easy and breezy for you.
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Thank you all for your contribution to this thread. I respect each and every one of you
and for those who have been a flashlight on the darkest parts of the path you have my deepest gratitude
wishing you all well
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Starsnow77
You are wanted here and needed here. Your posts will help others on their journeys whether you think they will help or not. My heart goes out to you having a hearing loss. I am fortunate to have a partner who is retired from regular work and was able to take me to all of my appointments and to be that second ear for me. Even though I can hear, I did not always hear the same things as my husband did. My brain would "stop" at something that would be said to me and I would miss the next few sentences while I processed the first sentence. My husband was able to help me through that. I also realize I am fortunate to have that support and wish everyone did. To not be able to hear what was being said and knowing it was about you, would make it even hard, I would think. And stressful!
I am not comfortable about showing my chest to everyone. I will joke about it, because that is my coping mechanism when I'm uncomfortable and pretty much this entire journey has been so uncomfortable on so many levels for me. I know I am not alone, but we all walk different paths. They might be right next to each other, but none are the same.
I hope that your radiation visits go well and that they are the best they can be in the situation you are in. Those appointments for me, with the exception of a few, went very fast. I would change into my front opening gown and wait in the waiting room to be called. Sometimes they would be behind and I would meet the person scheduled in front of me, and sometimes I would be there alone.
I was told that I would meet with the radiation oncologist each week, but the days were always different. I didn't have questions most of the time for him and he would look at my radiated site to see how it was holding up.
I am now on the other side of that part of active treatment and pray each day that I never have to do it again. It was a hard year on me. On all levels. Emotionally, physically, spiritually and mentally. I got so tired of hearing how brave I was. Like there was any other option. I may have looked brave but I never felt brave. I was terrified and scared.
Sending you hugs,
Amanda
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