Starting Radiation in July 2019
I found the "Starting..." thread so very helpful when I was going through chemo. It was really nice to be able to compare notes with folks going through similar stuff at the same time.
I had my simulation today and will start radiation in about 2 weeks. I got fitted for my mold and had tattoo's applied. The anticipation for the tattoo was worse than the actual application. The only frustrating thing was they insisted on a pregnancy test. I've had my tubes tied for years, had a pregnancy test 6 weeks ago prior to surgery and haven't exactly been getting it on during my recovery. But apparently my word's no good in these parts and they insisted. My real irritation is that I have no veins post chemo, so every blood test can turn traumatic. Luckily the tech was quick and gentle, so it was pretty easy.
I'll go in for an education session and general consultation on the 16th, and start treatments on the 17th. I *think* I'll have 25 sessions in total.
In the mean time, I'm enjoying the summer, my recovery from surgery and my energy levels rebounding post chemo. I'll treat the next two weeks as a mini-vacation and hopefully go in strong, at least mentally.
So what do you have planned?
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Hi I am new to the board and today was my first radiation session - I get to have 25 plus 5 boosts. Not super comfy the table is really hard and they wouldn't get me a mattress lol. A bit like auditioning for a part in a star trek movie but it wasn't bad. Sloppy with cream right now hoping to just tan not burn. I have a horse farm so hopefully will be teaching and riding for the summer along with my rad appts. At least I can sit down on a horse if I'm tired. I had a fun long weekend before I had to start. Glad your tattoos weren't painful mine ouched and was not the plan for my first tattoo. Enjoy your two week mini vacation - I am sure you will rock the rads.
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Hi fellow RADs warriors! Hope you don't mind me stopping in to say hi. I just wanted to stop by and wish you all good luck on your RADS journey. Though my experience in RADs was a "bit" rough, and I ended up with Fibrosis, LE, and Rib Dysfunction/Costochondritis, many others in our Oct group did just fine and so have many other members since . The odds are in the favor of y'all having minimal SEs .
I was given many stretches and exercises by my PT and RO that helped me to keep from losing range of motion and manage the LE that developed during my RADs treatments, which I had posted in my RADs group and I'll share here too in case anyone might find them helpful. Two rules of thumb - go slow and gentle andiIf in doubt, ask your team. Always.
Oh and before I forget, there's a really great link about What To Expect During Radiation from the Memorial Sloan Kettering Cancer Institute that MissouriCatLady in her June RADs thread and she was right!! it's really full of good stuff, things I wished someone had told me before I started too. Give it a look see, can't hurt.
Also, if you've not read this thread yet, List of what to do/get/pack to prep for Radiation Therapy, it's also a good place to go for tips and tricks on what helps during the next few weeks.
Like I said, I hope all of you will sail through treatments with the minimum of SEs. This was our thread Radiation October 2018 and we discussed quite a few things that were very helpful along the way - including different creams, hydration, NAPS, exercise, etc. Maybe it might be helpful to you on your journey.
My best advice that I can pass on, that helped me is this:
1) Start using Calendula or other creams 2 weeks prior to treatments on the area of RADs (if one breast, be sure to get up into the armpit and into the ribs as well). This is what my RO asked me to do. Continue as your team directs you, most of ours seemed to say 2- 4 times depending on various SEs.
2) Drink lots of water.
3) Walk or move as much as you can, given your own limitations.
4) Double check with your RO/team about meds you are on, as some on my list were ones I shouldn't take before AND during RADs & after for at least 2 weeks (antioxidants especially).
5) Everyone is different. Some experience SEs immediately (like me lol), others sail by with very minimal SEs. If you are concerned or experiencing pain/redness/swelling/heavy feeling/etc, don't be afraid to speak up to your team. That's what they are there for!
6) If you do experience SEs, one of the things that SAVED me was "Boob Lasagna" - Aloe Vesta layered on with special gauze and then wrapped under a compression bra. I think I would have lost my mind the last 2 weeks without it. Ask your team. Also, on page 6 of the Oct Rads Group.
Wishing you all the best and quick healing after you get to ring the bell! Good luck Warriors! You got this!
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Thanks for all the great info, Spoonie!
I start in July, too. First I have to finish AC with my last infusion on Friday. Then meet with RO and do setup on 7/25. Hoping to get at least 3 or 4 rads under my belt the next week. I was told I'd have 20 total, with 16 whole breast and 4 boosts. Don't know if that is the final prescription. Either way, I should be done by the end of August.
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GiddyupGirl - I wanted to address the sun exposure issue as you mentioned you'll be outside working with horses. I just finished my rads two weeks ago (had 16 plus 4 boosts) and my treated breast was sensitive to the sun during treatment and about 10 days after. This weekend was first time it didn't feel like it was burning in the sun (and that is UNDERNEATH a shirt). I was lucky I started in May and it wasn't that hot in May or earlier in June, so I could have a jacket or sweater over top of another shirt as it seemed I needed two layers of material to prevent the burning sensation from the sun. I wore a soft bra and later on a cotton camisole which was not as "low cut" as most bras to try and cover as much of my upper chest as possible underneath a light t-shirt. If you can find a soft sports bra that covers your upper chest, that will help. That way you can say wear a t-shirt over it and get two layers to protect the area. It's just that the treatment area covers the upper chest too and that is an area that most bras don't cover. Perhaps shirts with UV protection would help this issue too, but I don't own any (yet!).
I'm not sure if everyone has this issue, but I sure did and they do say to not expose the area to the sun during treatment (to cover it and then use sunscreen two weeks after treatment for the rest of your life).
I named it the "vampire breast syndrome" as I couldn't stand to be in the direct sun. Well, my breast seems like it's not a vampire anymore now and I can just wear a bra and t-shirt without feeling like I'm a melting! That was a good feeling today. I feel pretty much normal now and even the itching seems gone (the pinkish color is gone too).
Good luck with your treatments!
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Spoonie thanks for all the great info I already started doing the stretches. I am only two treatments in but I itch (maybe its all in my head - I hope).
Spiralforest great advice for the coverings I went out to the paddock today with only one layer and my poor boob was on fire so came back in and put on a tee shirt and another shirt (way too hot) so am shopping on line for a high sports bra. Love the "vampire boob" its just perfect. Glad everything is healing up for you so well.
Thank you so much for stopping by and giving us newbies help on this part of the rollercoaster ride, it is so much appreciated.
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Hello ladies. Wishing you the best. I finished rad on 10/31/2018 had minimal side effects and when the healing started, it went quick. There's just an FYI I would like to share. I didn't know until I was blindsided by PTSD but radiation therapy … the process … can retraumatize sexual assault victims. There have been medical papers written on the subject. The process, exposure, laying on a table being told not to move, darkened room, male radiation therapists can all trigger a sexual assault survivor. PLEASE if you are feeling anxious or having issues, if this may apply to you, talk to your RO. Mine did everything he could to help me through the process including making sure no male ever entered the therapy room. I also want to say I have read where many patients have had wonderful, kind and caring male radiation therapists. This isn't about them or putting aside your modesty, it's about your comfort level during the treatment process. Good luck to all of you. Once the treatment starts, it goes quickly.
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Hi!
I met with the RO and had my simulation and tattoos on 7/3. My radiation sessions start on 7/15 and I will have 16 whole breast and 4 boosts. I am grateful for some extra down time as I recover from chemo. I had my last TCHP on 6/4 and am now having HP only every 3 weeks. I’ve heard different opinions about swimming, and am pretty confused. I’m looking forward to rebuilding my strength!
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Hi. Thanks everyone for the great information! It’s really helpful to have some guideposts along the way.
Lulu - like you I’ve got a couple more weeks before I start and I’m grateful for the break. It’s been such a marathon that I feel like I need to catch my breath before the last sprint.
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Kber- In what part of NJ are you? I’m in central NJ near Princeton.
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Hi everybody - hope you are all doing well. I am looking for some advice. I just finished my first week of rads on Friday and today was so exhausted I didn't manage to finish work. I couldn't sleep but just felt totally exhausted. Kinda of freaked me out. I thought fatigue wasn't supposed to start till later on in treatment. Any advice?
Also spiralforest wanted to say hi from one canadian to another. I am in Toronto but love Montreal. My husband proposed to me there.
Take care.
Rikki
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Hey GiddyupGirl - everyone is different and responds differently to treatment. I was told "no SEs or fatigue blah blah until at least 2 weeks or so". Not for me, I had SEs Day One. I had nausea that happened ONLY after treatments (which only abated after the second week of RADs). My breast got heavy, slightly red, and sore as well. Although, in the beginning days, it faded fast and didn't last more than a few hours. By the start of the second week I was "sunburned", couldn't stay awake, and lot of other SEs were going on. Don't let anyone tell you "It's not RADs yet. It can't be."...it sure can be. You are not imagining it or crazy.
So, please don't beat yourself up if you're tired already. It sucks, but it just try to go easeir on yourself. Cut out a few things that aren't neccessary or do them in smaller stages. Rest more. Drink more water. That seemed to help a bit for me. Also, let your team know that fatigue has hit. They may not be able to do much about it, but keep them posted. Hang in there.
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Question for the veterans: I'm supposed to start rads around July 29, which would put me done about Aug 23. How soon after that, realistically, can I make a 12 hour road trip (spread over a couple of days)? I'd be driving with my husband, but we switch off driving. I'm wondering about fatigue, tissue damage/pain, and any other SE that would impact that trip.
Thanks in advance for any advice.
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Mountain Mia - it’s hard to say whether you will be okay for a long trip. Every woman is different in how she reacts to radiation. I had 33 treatments and experienced fatigue about halfway through. My oncologist told me not to fight the fatigue but to rest. I had very little burning and redness. I was fortunate but some ladies have had debilitating side effects from the radiation.
I hope you are one of the fortunate ones. Talk to your RO about your plans. It just depends on how you react and take the precautions and advice he/she offers like types of cream, etc.
Good luck!
Diane
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I’ve done 8 out 20 treatments and so far my skin is holding up fine. A little swelling and sore or tingling at times but nothing major. I am feeling some fatigue now and that’s the worst part but is manageable. I traveled over the weekend (flew) and it was fine.
They’ve told me that it’s usually after 2 weeks of treatments that the skin starts to be affected so we’ll see how I’m doing at the end of this week.
Hang in there everyone !
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Hey Spoonie how are you holding up. I did let my new RO (the one I saw last week was pretty useless so I asked for a new one and she is great) know how exhausted I was. She told me that there is a study being published that 5% start with fatigue right away. They believe is some kind of immune response. Nothing really to do about it except,as you said, slow down and rest when needed but nice to know it isn't something totally weird.
Thinking positive thoughts for you and I am really glad that you can swear and do in car scream therapy. I did it on the highway during rush hour forgetting that my window was open. People were a little weirded out (thought I was crazy road rage lady and that made me laugh). Take care.
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I'm 18 days post-lumpectomy & sentinel node biopsy (the latter was a real treat) and have my first rads consult w/RO tomorrow. Since my tumor was 3mm (I found the little f---er during a self exam), margins were clear, no lymph node involvement, & my recurrence risk is low, I'm hoping for the 40 grays over 16 sessions. Not sure if it will be whole or partial breast but they previously mentioned whole (which my RO will have to explain convincingly why that makes sense in my case, tomorrow). I have 2 tubes of Miaderm at the ready. Thinking I should also get some calendula & aloe.
Each part of this process is physically and emotionally taxing, sheesh! I'm finally feeling less sore, swollen, nerve stuff, etc from surgery (although I have a lot of cording through my armpit, breast, & chest, which is weird & painful) and had my first run today, which felt awesome. Planning to play in my soccer game Thurs - hope nobody hits me in the boob or the pit
But now as I start to feel pretty good again, here's another taxing phase, rads. We are tough, badass women and we'll get through it but it's A LOT to go through. I have so much awe & respect for those dealing w/way more than I am, chemo, mx's, and more.I am "solar powered," as my family says, and enjoy laying out in the sun (topless - luckily my yard is very private, lol). Although I always use sunscreen, my boobs are tan. I hope that works for me not against me with rads. We'll see...
Power on, ladies! Stay strong.
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Time to join radiation therapy party. I am two months post single mastectomy with tissue expander, and my expander is finally filled to the maximum. I have done my planning CT today and will be starting rads in 1-2 weeks, total of 25 sessions. My breast is still a bit swollen and I am not too comfortable with my pec muscle, but I guess it's as good as it gets.
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I was one of the lucky ones because despite having 33 treatments I only experienced slight redness and fatigue. I know ladies who had debilitating side effects to the point several had to stop the treatments. I also had a great group of techs. They were gentle and compassionate. Another blessing.
I do know that lung scarring can show up years later. So far so good for me. 8 years out next month
Hope you ladies who are starting or are in the process don’t experience those kinds of side effects.
Good luck.
Diane
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Hi JulieSim - welcome fellow torontonian . The reason we are here kinda sucks but the people are awesome. I'm at 8/30 rads today. So far mostly just tired. The rads part really isn't bad. Getting undressed and dressed again takes about the same time as the treatment. Put on lots and lots of moisturizer it really does help especially right after treatment. You'll do great.
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Hi all, I just finished on 7/2 and wondering how long it takes for my breast to stop looking like a sunburn where they did the 7 days of rad in the surgery area after doing 15 days of full rad on the whole breast. I only look like sun burn on the surgery part done last? The whole breast rad wasn't bad at all looks normal, but I don't see any improvement in the surgery section they did last? Still feels hot and is sore and that area wasn't like that when doing the whole before, just had little bumps that itched like crazy. I hardly ever burn in the sun so?
I made myself park far away from entrance to where I took the radiation and walked fast to get there every day that I was there and I think that kept me from feeling weak (I had felt that way the 1st couple days then started the long walks to and back from my car and no more problems with the weak issue. I also kept taking my long list of vitamins just as soon as I got home every day from radiation. And yes I gave the list to them and they told me what to and not to take and I also think that helped me a bunch. I only took 2 naps at home - total during all the treatments I was just normal in all other ways except the above and I keep getting Yeast Infections and got it again now that Rad is over- Anyone else had this issue?
I only had a couple days I called "meltdowns" 1 when under the rad about my 3rd day in, but issues during the time in my life just before I started I think caused it. My son had heart surgery and my baby sister died of Cancer 1 month before I started my rad.
I start the hormone meds doctor on the 26th .>>>> hope that isn't going to be an issue for me. I am going to that forum next to read about all the issues with it before I go. With the Rad I didn't know much because no one ever called me back from that department when I had questions I needed answered and sure wish I had found this site sooner.
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Dear Lady-Bug-4-Me,
Welcome to the BCO community. we are sorry about your diagnosis and treatment difficulties but glad that you reached out to our members and hope that you will find support and information here that will be of help to you. Please let us know if there is anything we can do to help you navigate your way around the discussion boards. We look forward to seeing you here.
The Mods
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I had my second session today, have 20 total with 5 boosts. I don't know if it's from my neck or what but I've had a headache since yesterday. The nurse said that it isn't from the radiation. I see the RO on Tuesday so I'm going to ask her if it doesn't go away. Has anyone else experienced a headache during rads?
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Hi Shadow: I just finished #8/30. First couple of days I had a rotten headache. It seemed to be from clenching my jaw on the breathing tube for left side breath holds. Also the way I was holding my neck while getting treatment. Gotten way better now I've learned to relax my muscles (I have a great osteopath who explained it all and helped with the headache). Also are you drinking enough - rads dehydrates you like crazy. Good luck with your RO. Hope your headache disappears. If I can be of any help just let me know.
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GiddyupGirl - thanks for the tip. I didn't know radiation therapy was dehydrating, but it makes sense if you think about it. I'll also be doing deep breathing during treatment, but the team didn't mention using a breathing tube. I have my education / orientation session this coming Tuesday and the actual zapping starts Wednesday. I'll ask about it when I go in.
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Hi Kber - I don't know if they use it where you are but basically its a snorkel with a nose clip. If you get one ask if you can take it home to practice with. I did and it made it a lot easier when I did rads. I plan on wearing flippers to my last rad session, my way of celebrating. If I can answer any more questions just let me know (I am at 9/30) as of today. Good Luck and keep us posted.
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GiddyupGirl - you made me laugh out loud! I had my simulation Wednesday, and I get to use the snorkel for my treatments too. Thankfully, I am a diver, so it was not a big deal. I love your idea of wearing my fins to treatment! Prayers and hugs to all on this journey.
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Hi SJ glad I made you laugh - but seriously not only am I going to wear them I am taking my mask as well and I will get them to take a picture of me in the machine. That's one you won't see often. Hugs back to you and everyone who is swimming in this stream. Remember moisturise moisturise and hydrate hydrate hydrate. Wishing you all no SEs
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Enjoy the celebration GiddyupGirl. Laughing will feel wonderful and be a great way to commemorate the end of your Rads journey.
I did something similar for my RADs team to show them my appreciation & give them a laugh as well.
My RADs ended on Halloween so being the Unicorn that I am I picked up an amazing unicorn onesie from Wal-Mart and did some glitter makeup to complete the effect. I wish now I had someone take a picture but honestly I was just enjoying living in the moment and celebrating with my team...Id made it & rang that bell and that's what I hold in my mind & heart now.
Im sure your last day will feel similar - a celebration but also a bit bittersweet to know I wouldn't be seeing these wonderful ladies every day. I still stop by when I'm around that area and say hi when I can. Even sent a thank you card to the entire team there to tell them how much they all meant to me on this journey.
Good luck to all who are soon to be finishing and equal luck to those just starting. Hugs and healing.
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Hi Spoonie: I'm glad you popped in. I worry about you and your pup and think of you often. Of course you would do something that fabulous and thoughtful. I am a little sad there was no picture of a unicorn getting rads but I will let my imagination fill in the blanks. Hope you are sleeping well and taking time to have some fun. Sending you both healing hugs.
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Hi GiddyupGirl thanks for responding. I went to the chiropractor this morning so I'm hoping that helps. I don't have to do breath holds but was clenching the arm bars from stress during treatment. I drink a lot of water so it shouldn't be that. I'm hoping it goes away soon.
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