Starting Radiation in July 2019

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!

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!

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.

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

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.

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 !

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.

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

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.

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?

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.

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.

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.