February 2018 Starting RADIATION

VL22 - I still have some pain in it. I mostly notice it if I twist, reach, or at night changing positions. It’s been off and on, but compared to a few weeks ago, I think it’s slowly improving. There was a time after each treatment that I was literally frozen in my movement with stabbing pain. I would have to sit up by pushing with my arms in slow motion just to sit up on the side of my bed when getting up. If I moved too fast it would stab at me. For three weeks if I stood for over an hour - I would be in pain and Had to ice it several times a day. This is not a typical side effect of chemo, but for me it was. Each treatment seemed to make it worse. I had it X-rayed, was put on muscle relaxers and pain pills. They only dulled the pain. NSAIDs are not good for my heart taking days at a time. It’s been a pain, but hopefully in time it will go away. I’m forcing myself to move, but I can’t bend over very well - like picking up things, or bend down too many times.Also it hurt when I coughed - having a cough these last two weeks - but that’s about gone - thank goodness!

Always something - hope everyone rides out our rads smoothly.

Hi Diane - Welcome to the Community! Sorry you had to join us here but glad that you posted. We hope that you will find support and information to help you along the way. If you have any questions for us please do get in touch.

Best wishes,

The Mods

Hi Blair2,

Glad you made it through your first Rad, mine coming up soon after simulation. Did you mean your back was marked with X in ink, why? And the big V where exactly did they mark you? Just wondering.

Hi all - I finished today! 31 total. My experience was very good in that I had no skin issues. I only used basic lotion the entire time. I had such a hard time during and for weeks after chemo that I feel I deserved for something to go smoothly!

I will say the one thing that really surprised me was the fatigue. It hits me about two hours after I wake in the morning. At night I have trouble falling asleep. If I take a nap I wake up and feel like doing nothing. I’m told this can last after rads also.

Good luck tp all of you - it is all truly exhausting but there is an end!!

Hi Veeder - Hi Lisa,

Yes, after my simulation (which was week before last), they left these clear one inch tapes marked with “X”es on them - stuck to my back. It’s just for positioning as they were on my lower back. (Although doesn’t make sense to me why they were so low). Today, they put this “V” mark on my side near the boob, under my arm. Not sure why - I guess just a guide of some sort. I do know they position you within these different numbers they used for the simulation. I’m thinking these numbers are the beam numbers they use to shoot the beams, or body position numbers - just don’t know. Too bad there’s no tech going through this to help us figure this stuff out. (Not that any tech needs to have breast cancer - I didn’t say that right, but what I mean is some one here to explain the details.)

Tomorrow I see my radiation oncologist, and I plan to ask her if I could see a mapping of what they’re doing. (There may not be such a thing). I would really like to know how and where these beams are going through my body. I think we have the right to know what’s going on - I can be a pain to these busy people, but I want to know how this all works, and where these beams are shooting through me. (Especially how close to my heart and lungs). I want to know why some people have only 20 treatments as opposed to 35 with similar diagnosis. If I find out - I’ll let you all know what I learn.

Soon we will probably all start venting about our fatigue and sunburns. I’m wondering if our bras are going to be a pain to wear! Diane has a start in this headache - so sounds like treatment 8 is the pink stage.

LizabethM - how are you coming along with rads? Where are you withtreatments?

Thanks Blair2,

Thanks for explaining about the markings. It helps to know what was done since I'm having this done on Thursday. I totally agree about seeing the mappings. I actually want to see the mappings before I agree to radiation even though I intend to do it and already signed the consents. I wonder if more treatments depend on the size of the tumor or the grade of the cancer. I'll be looking forward to hearing what you find out.

Dectorem - that is interesting about the partial break through on your DCIS DX. It’s good they are slapping it down by giving you some radiation. Will you also need hormone therapy too? My simulation was week before last and I almost peeled the tape off thinking they forgot to remove them. They didn’t tell me to leave them alone.

VL22 - gosh looks like you’re almost done! I bet that’s a good feeling. Any good advice for us beginners?

Sammi - you’re starting in this party - we will have to compare notes! Several started this week it seems

Just like with my chemo sisters - I’ll get everybody mixed up. I’m really as lost as everyone else here on this, but it’s nice to have a group to share our fears, side effects and questions.

Rebekah - we are quite a beginner group here! This is great you are also starting, and I’m glad it went well for you. We should all report how our skin reacts and what creams might work best. You made me remember that they were playing music in my room too this morning - some oldies that I swear they must have tailored to my age. The techs were much younger than me to want to listen to what I call “hippie dippie” music. (I was thinking that they must have thought - “here comes an old lady that was young in the 60s and 70s - put tape “B” in the music machine!”). Who knows, but I liked it as I love the oldies.

Treatment 3 today and I am tired already. Don’t like this feeling. I am only getting 15 zaps with no boosts. Not sure why so few. Not complaining but will ask on Thursday when I meet with my RO. I am glad others are asking to have their RO show them how the beams enter their bodies etc.

I want to see a radiograph showing my heart and ask how much exposure it is receiving. They should be able to give you an idea of how many Gray of radiation your heart is receiving. The lower the number the better.

Not sure what to do if I don’t like what I hear when I talk to my RO. You can’t really demand a new procedure etc. and insurance will certainly not cover a new simulation etc.

This whole experience makes me feel very helpless. Still pissed I couldn’t get prone positioning.

Hi Blair2

Treatment #9 today. I have a male and female therapist. I felt somewhat embarrassed at first as the girls are swinging side to side as I am crawling up on the table lol. After James realized I could manage getting on the table I notice he hangs back till I get in position. He always is the one to put the cushion under my ankles. Then they get on each side and adjust my position. I give up thinking about what I must look like with my DD's flapping and my ars in the air. You just got to laugh. I met a nice woman today getting rads. She has had about 26 so far and she said her skin is not doing well. She said it had blistered and cracked and they gave her nonstick pads to place on it and she has 5 more treatments to go. Maybe I will see her tomorrow. RO told me that skin issues usually show up around the last third of treatments. Bigger breasts tend to have soreness under the breast due to skin on skin rubbing. Keep a square of a soft cloth underneath.

Today I just laid there with my eyes closed and tried to zone out.

Back at it tomorrow. Hang in there girls

Diane

Tonight I completed my 1st of 29 radiation treatments. It wasn't so bad. I listened to the music, watched the changing lights above in the ceiling and tried to relax and then closed my eyes. Once I finally seemed to relax it was over. I hope as each day continues it will be easier to do.

I did speak with the RO right after the treatment. She wanted to see my skin and explain the mapping and large box drawn on my chest. She showed my husband and I where the beams are going and the radiation is treating. She is conservative but also thorough. It eased my mind a bit. As for the boost on my schedule she said was incorrect. It's actually no treatment that 25th day but more scans. Then on the 26-29th day it's a smaller area being treated.

Blair2: Yes, I will be taking hormone therapy after rads. That will be my next info to read up on.

My 2nd opinion medical oncologist has recommended extensive genetic testing. My insurance is going to pay for it. They are interested to find out how many females in our family from mother, grandmother, aunts, great aunts, cousins all having a form of breast cancer ranging in ages from 32-70 years old. And many of us are Brca negative. It'll be interesting to see what comes of it.

Good morning everyone. Another day another zap! I wish everyone a great day. And I have to say how impressed I am with those of you who are working or have young kids while going through all this. Stay strong

Good morning, ladies!

I just had my 7th (out of 20) treatment this morning. No skin issues as of yet (thank goodness). I put Aveno on after treatment and Aquafor at bedtime. The fatigue is a killer! I can barely make it through my work day and I literally am in bed by 8. I am walking about 30 minutes a day, but it's really not helping the fatigue. My joints have started to ache something fierce! I am 5 weeks post chemo so I dont know if that has something to do with it or if the RADS are the culprit. I get out of bed each morning and can barely walk...my hips hurt, my heels hurt, my hands are stiff.....I feel like I am 80! I also have a lot of swelling in my fingers lately....so much so that I think I am going to have to have my wedding ring resized. Anybody else experiencing any of this????

Hi

I will start 4 weeks whole breast radiation in early march. My Radiation oncologist mainly left it up to me to decide whether to take it ( stage1b,micrometasasis inSLN) but when i asked him if he would recommend it if it were his mom, he said YES so I will trust his judgement!. I think my anxiety is much less since I know the complete plan now! Will take estrogen blocking med after. My sister had radiation last year for throat Ca and used Calendula so I will ask the nurse about this. They recommend only pure aloe vera or Aquaphor. Glad I found this site!

Good luck to us all!

CaryLiz and flowergal we are sorry to hear what you are both going through, but very happy that you found our community.