February 2018 Starting RADIATION

Thanks for your reply. I just keep getting told that radiation is the "Gold Standard" post lumpectomy. There are other breast clinics I could go to for a second opinion but they are several hours from my home. My husband thinks I should get radiation just to be sure nothing got "seeded" outside the lumpectomy site from the biopsy etc. 

I am fretting

Hello all,

I will be getting my last chemo (Taxol) on Weds. and set up for my first RAD consultation on Feb 19th. I would imagine I will be starting the first week in March.

I have been reading the posts and I appreciate everyonr sharing your experience and support. I will be joining you all soon.

Hi all- Thought I would join in as I had my first 4 treatments last week out of 26. Using aquaphor but haven't come up with a way to keep the goo contained under my t-shirt layer. Large bandages? What do you use to keep it contained? My only side effects so far have been tightness in the armpit. My lymphedema therapist has me doing daily exercises on the floor with a firm foam roller under the vertical length of my spine.This causes your arms to droop down and helps to extend and stretch the armpit. Feels great too. That's all I've got for now.Thanks~

Rebekah: I hope that it goes easily for you.

I have an update. Since the billing department at the new RO was open today (closed for snow last Friday and all weekend), I was able to spend the morning finding out if they were in the insurance network. Turns out, all I really needed was the "billing NPI number" which the billing department had and their Tax ID number. Once insurance had those, they looked it up and several minutes later, I got my answer: IN NETWORK, Yippee!

Also covered is the constraint device or "mold" that I'm going in for tomorrow. The insurance code for that is 77334. I'll let you know how that fitting goes. I'm so happy about this since I didn't like the RO that the BC team told me to go to. I get the feeling that they aren't happy about this change since they won't be on the same "team".

Hi there Doofuscat and you are not being a baby - this is tough stuff. But the good news is that the simulation is much harder, and much longer, than the actual radiation sessions will be. You'll be in position for less than ten minutes total during the treatments so it will be much easier on your neck.

Is your BC in your left breast? Radiology is so good now that they take all kinds of precautions to avoid your heart, so try not to worry too much about that. You might want to ask the radiologist to show you the image of where they are radiating; both so you will know where to apply your calendula cream and so you can ask your RO about the distance from your heart and lungs when you see her next.

On the numbness in your arm, do your stretching and be sure to continue it twice a day during radiation. I only did super simple stretches and they helped a lot!

Ha, that is so funny! My husband and I has exactly the same conversation!

sweetp6217 That is awesome that your new treatment centre is covered by insurance! I am happy for you:-) What a weight off of your shoulders!

Doofuscat - I feel the same way. I try and handle all this but it can take just one word and I am bawling my eyes out and can't seem to stop. So embarrassing sometimes. I keep thinking, "it's been months now I should be used to this," but it just seems like I am grieving over so many things that this disease has taken from me. I know in my head that in time it will get easier to deal with the grief and as one stranger said to me as I was crying my eyes out, "Its better out than in!" (Sweet stranger lady who gave me a hug:-))

Does anyone know what is the optimal time period post surgery to do radiation?

I got a call back yesterday post my mapping appointment from my RO saying that on the CT Scan they could see that there was air in my tissue expander. I guess that is a no no and he asked me to call my PS and have my TE deflated to let the air out, then reinflated with only saline. I have no idea why there was air in the TE, we had done several saline fills, so I'm not clear if the air was in there from when she did surgery or what. Anyway, I have to see the PS and then reschedule a CT Scan with the RO and then I can start radiation. This pushes me out another week and a half. I am currently 4 weeks post surgery. I'm wondering if I need to call back and push to get quicker appointments.

Thank you all! I wish you all easy treatments with minimal SE's.

Rebekah

Dectoremember- I was totally freaked out with my simulation. After it, I sobbed for about 90 minutes. It was easy and the techs were great, but it was so surreal. There were more CT scans and people drawing on me with Sharpie and then the tattoos, which are just pinpoints, but I didn't want them.

I'm into my second week of sessions and it does get easier. I had to ask myself what was bothering me about it and what I could do to fix it. I decided that I needed to know more about the techs working with me. If they were more personal in my brain, I could handle the sessions.

Doofuscat- as for breath holds, a physical therapist once taught me a breathing technique that has helped immensely with this. Breathe in as far as you can. Now take another inhalation and hold it. Start with 5 seconds if you can. Then release all the air. When your lungs feel empty, push with your abdominals and squeeze out the rest. Hold for 5. Repeat. Gradually increase the hold times as your able

I read that after mastectomy, radiation usually place in a window of 4-8 weeks, but can be delayed. It's so hard not to stress with every delay, but so many of us have them at one or multiple points. It is exhausting.

I've had issues at every turn, but I am 21/33 and my skin doesn't hurt and it is just pink. I'm pretty fair and these boobs have never seen the sun! I have 3 more whole breast, then 7 boosts. I truly hope you ladies don’t have skin issues

My RO said the tiredness would be like “nah, I don't want to go out to dinner". So not true for me. I'm more fatigued than I was during chemo. I could seriously nap for over an hour every day. I think those who do chemo prior to rads suffer from more fatigue.

Anyone else so over this crap

Good morning ladies. I’m new here and was a chemo sister with Elizabeth for the last two months and thought I would follow along side everyone here as we start our new adventure of radiation treatments.

Yesterday was my first visit with my RO, and this morning I will have a mapping done. I actually start the treatments, I believe next Wednesday. I’m 68 years old, had a bypass three years ago. I can’t tell you how shocked I was to develop breast cancer on top of having heart disease (which was a shock as I was a silent case), so both chemo and radiation was like a death sentence to me. From the get go, I made sure my heart and lungs were going to be protected. My RO was very understanding of my concerns.

I will be getting two types of radiation - External in face down position, and Accuboost. They explained to me that Accuboost is sort of like a mammogram that targets where the tumor once was. In my case it was just behind the nipple. I’ll be more nervous with the external machine that will beam underneath me.

Chemo was especially hard for me, actually missed last treatment due to bad side effects, my biggest one was I’m having very bad back pain. It’s inflammation that is going on it’s 5th week after my last chemo. I still can’t bend or even stand long without it hurting. Never ever had back problems. I’ve been on muscle relaxers, and at present out of pain pills, but trying to see if I can live without them because of my heart disease. I shouldn’t be taking NSAIDS on a daily basis. So, I don’t care how painful it will be to lay down on that machine table - I don’t want my heart or lungs beamed!

Anyway, I’m looking forward to hearing all of your experiences with radiation. I hope we don’t all end up “glowing” in the dark!

VL22 - good to know. If 4-8 weeks is an appropriate window then I will hopefully just slide in there. Glad to hear your skin is holding up. Gives me hope.

Rebekah

rdeesides, sorry you’ve been delayed, but hopefully the next week or two go fast for you. I am also very fair and my RO and the techs during my simulation said that doesn’t mean I’m predisposed to have A bad skin reaction. Hope they are correct! My sister went through rads in July/August and said the Calendula lotion recommended by the RO worked well, and she had little redness. I start rads tomorrow and I’m equal parts “happy to get things moving” and anxious. Best of luck to you and all of our February sisters.

Hi Ladies!

I had my simulation session yesterday and boy was it not what I expected. After being scanned and marked multiple times, it was determined that my heart was in the way. So they had me sit up, put a nose plug on and breathe through a mouth piece attached to a tube. I will have to press and hold a button, take a deep breath and hold it for 25 seconds, then release my breath and the button. I believe the button is a fail safe for when I am getting the actual beam of radiation. if at any time I can't continue to hold my breath, I release the button and the beam stops. After practicing this sitting up, they put me back in the CT scanner and had me do this and re-scanned me. My heart will now be out of the way and I will be able to have radiation on my full breast.

I have a practice session on Monday and I start treatments Tuesday. 20 total (16 regular and 4 boosts). I was told I should be fine for the first 2 weeks, but will start seeing redness after that, perhaps some burning and itching as well. I was also told that my ribs on that side have a greater chance of fracturing if I have trauma to my rib cage at any time, and my lungs will show scarring, but I will not notice anything as far as my breathing. My breast, I was told will feel more firm than the other and will have a slight tan look to it.

As far as creams, I was told to use Aquafor after treatment, nothing before, and to get deodorant without aluminum in it.

Why does this freak me out more than the chemo did?? I felt like crying yesterday while they were marking me.......

Blair2 can I ask a personal question? Are you large busted? My RO told me I was two small for the prone position. I am a B/C cup but my breast tissue spreads all the way over to my underarm area. I didn't push hard for the prone but I too think it is a better set up to avoid heart and lungs. At my simulation Monday they had me do the breath hold while on my back. They keep telling me that the machine will shut off if my lungs aren't expanded enough to move my heart out of the way. Of course they have not really addressed my lungs getting nuked. I'm not sure insurance will allow another simulation/planning if I throw a fit and demand the prone position. I am freaked out about the radiation. Maybe its the word itself that scares us all.