Starting Radiation November 2019

Hi,

I didn't see a thread for the November group. I start my 1st treatment this week and I feeled drained before starting. I think I went a bit overboard buying lotions for my skin. I also have water from Lourdes which I plan on using. My sonic boob is uncomfortable and looks a bit like a football. Hoping it withstands the treatment

Hi fellow RADs warriors!

Hope you don't mind me stopping in to say hi. Hi!

I just wanted to stop by and wish you all good luck on your RADS journey. I finished my RADs on Halloween in 2018. 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 2018 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 Cancer Rehab PT and RO that helped me to keep from losing range of motion and manage the Breast Lymphedema 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 and If 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.

At the end of this post, I've shared some info/sites/videos about Gated Radiation (where you need to hold your breath). I had to do this due to my Left Sided BC in order to help protect my heart from the RADs. Some of you may need this and hopefully these resources will put your minds more at ease.

Ok, sorry to drone on. Think I'm nearly done! I sure 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 too.

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" - whuch us a cream called Aloe Vesta that's 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, you can find it on page 6 of the Oct Rads Group.

Ok all, hope this will help you all a bit on your RADs journeys.

Wishing you all the best and quick healing after you get to ring the bell! Good luck Warriors! You got this!

Breath Holds (Gated Respiration or DEEP INSPIRATION BREATH HOLD (DIBH)

This might be something some of you will have. I did. It's usually used for left sided BC to keep the heart out of the way of the RADs.

I was afraid I was going to screw it up somehow. What helped me was asking my RADs techs about this directly. For me and the machine I was being treated on, they input thousands of data points from all my imaging info from the "setup" (plus recalibration for each treatment and a new scan each week) and other mumbo jumbo I couldn't hope to ever comprehend into the computers that run the machine and it established a "parameter" for me, a gate.

If I, through holding too much breath, not enough, or couldn't continue to hold my breath any longer for whatever reason, the machine automatically shut off in a nano second when I "fell" out of that parameter (gated) range. Hearing that made me feel a ton better about the role I played in potentially screwing the treatment up and accidentally radiating my neck, brain, foot, whatever. LOL.

Good explanations can be found here:

https://www.petermac.org/services/treatment/radiation-therapy/other-advanced-technologies/deep-inspiration-breath-hold-dibh

https://www.verywellhealth.com/respiratory-gating-for-radiation-therapy-with-breast-cancer-4154077

A couple of good videos on YouTube are here:

"Deep Inspiration Breath Hold with VisionRT System" https://www.youtube.com/watch?v=JLWaTFHkCXA (I like this one because it shows exactly HOW the computer knows WHEN to shut off the radiation!)

"Deep Inspiration Breath Hold Technique" https://www.youtube.com/watch?v=n6jXkgLnNnY

"Deep Inspiratory Breath Hold (DIBH) Treatment" https://www.youtube.com/watch?v=oU8TE0fvqMg

Hopefully something here helps ya'll get through the rest of the RADs in your plan.

Thanks for sharing all this great information Spooniie77

Thank you so much for all of the information. I had my simulation today and start tomorrow. I am so nervous. They will be treating my right side. I am hoping for minimal side effects. Wishing all the November people the best.

I had my first session today. Is it possible to get skin discoloration after the first treatment? My lower breast looked slightly red/tan to me. I hope this doesn’t mean my skin is doomed

Had my second session today and doing okay.. 28 more to go.

I am doing brachytherapy, starting Monday. I can't wait for this week to hopefully fly by quickly.

3 down and 22 more to go. I am lining out the calendar every day and that makes me happy to do that

I finished 3 treatments with 17 more to go. The first one, which included breath holds and XRays was a little intense because it took about an hour, which was a long time to stay in one position. The second two were so much faster and easier.

I still haven't been called to start even though my 7-10 days since the setup has passed. Surely it will be this week sometime. I hate thinking about finishing in 2020. Wanted to make all my treatments in 2019 so I could say that's my bad year.

I'm trying to decide whether to attempt to shave under my arms or not. Has that been an issue for anyone who has started? My RO says I won't be able to, once radiation starts. I don't really have much to shave, but I'm thinking I need to rather than let it keep growing out.

Thanks, cathy57. RO called today and my trial run will be tomorrow, and then the real deal starts Thursday. I shaved too. My hair started growing just in the last few weeks. I was kind of hoping that underarms would be the last to come back after chemo, but no dice. Seems like it's leg hair that hasn't come back yet, for me.

Meeting with Radiation Oncologist for first time tomorrow, they say it will be a 2.5 hour appointment and if we move forward for radiation treatments, will add an hour for simulation. I am four weeks post op. pretty sore/swollen still. I have expanders in both sides and have had three fills. PS and Onco. Surgeon said they believe they will recommend doing axillary area and perhaps the clavicle area per my diagnosis.


Anyone have axilla done that has had their rotator cuff stabilized? I have had mine done twice (competitive swimming) and cannot raise arm completely above head or lay it flat due to pins and anchors.


Second worry, I have very pale thin skin. Wondering if they will help me to prevent breakdown to permit continued reconstruction down the road?


Very worried and scared to death. Not even sure what to ask- this has been very overwhelming.

Hi, November zappees. I did simulation on November 1, and started radiation (16 + 4 boost) on November 6, so I'll be doing #5 this morning. It's a piece of cake, I have a great team who gets me in and out in just a few minutes. I am doing the breath holding technique (left side cancer) and it has been tricky to find a way to remember how much to inhale before holding. I figured out that if the little box they put on my abdomen is in exactly the right spot I can feel it wobble right when I get to the right amount of inhale, and being able to set up correctly every breath hold has saved some time and meant I don't have to hold as long. So now the techs have me place the box.

I was told not to shave. It's winter here so NBD, and honestly I am covered in Sharpie and second skin from just below my neck to my belly button, so the aesthetics of not shaving are the least of my problems. I'm just grateful I can wear turtlenecks right now.

So far, I am tired and my breast is a little swollen, but not painful. I did not expect tired for a while, and am unhappy that it started after just the third session, but if that's the worst of this, so be it. I do find that drinking a lot of water helps, and am trying to continue yoga and walking daily despite the draggy feeling. Also using Miaderm several times a day to try to stave off skin issues, so far so good.

Finished my sixth treatment today. I need to start using the aloe vera gel. I did add some aloe juice which looks like water to my lourdes water. After I spray my boob and chest, I alternate with Avene ciclofate and centella by cytolnat which a pharmacist in France recommended. Before bed, I douse my skin with Badger’s chamomile and calendula baby oil. That is my current regiment. Too early to tell how the skin will react. I never had really firm skin and tend to scar easily, so not holding my breath that I will have few side effects. Good luck to everyone

Just back from setup, it was easy, and they will call me in around ten days for the schedule, will have 20 rounds to go.

However I felt very tired after a few hours, then took a nap, still tired, is it because of radiation or because of mental tiredness, who knows.