Starting Radiation in May 2017

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  • Ruby3813
    Ruby3813 Member Posts: 96
    edited May 2017

    Tappermom - yay! My advice for your first planning session: lots of patience! :-)

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  • CeliaC
    CeliaC Member Posts: 1,320
    edited May 2017

    Tappermom - Do you have any resource materials on Questions to ask? If not, please let me know and I will try to gather & "publish" between now & then.


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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    I suppose I could find some but the answer is no. Hate for you to have to go to a lot of work!

    MJ


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  • RoseRN1
    RoseRN1 Member Posts: 153
    edited May 2017

    first real treatment over. Let tge countdown begin! Tappermom ask about their preferred cream and when to start. Mine told me to start the week before

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  • Kz1966
    Kz1966 Member Posts: 45
    edited May 2017

    I start radiation on Monday. The only thing they told me to use is Aloe Vera. I kept a list of other gels and creams from these boards. I look like a road map with all the black marker lol

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  • LAW193
    LAW193 Member Posts: 69
    edited May 2017

    Tappermom is this your first RO appointment? I had a list of questions on my phone that I asked at my first appointment, they were notes I jotted down often in the middle of the night) so they aren't full sentences but I will copy and paste them here if they help you or anyone else who hasn't started yet:

    Do I have to?

    For how long? Risks of different options vs benefits

    Protecting my heart and lungs

    Prone vs supine

    Most up to date equipment?

    Clothes to wear

    Lotions/skin care. Start ahead of time? Anything to buy ahead of time? (Lotions or types of bras)

    Anything else to ameliorate side effects

    Deodorant?

    Parking

    Effect of radiation on seroma

    Cosmetic changes caused by radiation?

    Time of day - can it change for one day if I had a meeting or something?

    What if I get a cold/flu?

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  • CeliaC
    CeliaC Member Posts: 1,320
    edited May 2017

    Tappermom - Not a lot of work. I met with 2 ROs and believe I have a Word document with the questions at the office, which will make it easy to post.

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  • CeliaC
    CeliaC Member Posts: 1,320
    edited May 2017

    Tappermom - Not a lot of work. I met with 2 ROs and believe I have a Word document with the questions at the office, which will make it easy to post.

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    Celia, I met with my RO last week. Got a lot of those questions answered. This will be my mapping, tattooing and planning. The RO told me to use aloe vera gel, which I got. A friend who went to the same RO gave me a tube of cream she had used; I'll take it with me on Monday and ask if I can use it.

    MJ


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  • CeliaC
    CeliaC Member Posts: 1,320
    edited May 2017

    Tappermom - Oops, missed that you were talking about the "planning" session. Rad Nurse discussed creams to use/care instructions/handed out samples before I went in with the techs to the CT room. As I was extremely fearful of rads, I went to pieces crying during this discussion. Do not remember asking any questions (unusual for me) as I was overwhelmed. Spent almost an hour in the CT room. Techs made a mold (done by lying down on this substance kind of like bean bag beads that conforms to your body). Stayed in the mold throughout, with arms stretched above head, grasping two "handles". Lots of images done, practiced DIBH since left side being radiated, did the markings. RO & dosimetrist both popped in during - stated they would work up the "plan" & dry run would be in approximately 2 weeks (& it was). 1st Rad was day after dry run. Sounds like your treatment center does tattoos for markings - I had Sharpie type markers & as Kz1966 said, looked like a road map. Hope this gives you some insight.

    RoseRN1 - 1 down, yay! Does your center only do Rads on M-Fri? My 1st Rad was on a Wed & was happy for that 1st weekend & all the other ones - nice to have a break.

    In your pockets, healing thoughts & gentle hugs to all.

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  • RoseRN1
    RoseRN1 Member Posts: 153
    edited May 2017

    yes, Monday thru Friday. I'm sched fo 25 to entire breast and 5 boost

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  • RoseRN1
    RoseRN1 Member Posts: 153
    edited May 2017

    I already am getting these 'warm flashes' in my breast. Surprised it's starting after just 2 sessions. At least today was fast. In and out of the rad room in 10 minutes

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  • marigoldgirl
    marigoldgirl Member Posts: 15
    edited May 2017

    Hi all, I have had 8 radiation treatments and have been so itchy everywhere. Any one else have this? I am not sure if it is related or just dry skin and allergy stuff. I have not had it before. It is all the time and everywhere radomily. I will ask my RO on Monday but thought I would ask on here also.

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  • Lexicoe
    Lexicoe Member Posts: 66
    edited May 2017

    marigold, I have had random bouts of itching and I've had just 6 treatments. The skin of that breast is warm to the touch some too.

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  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited May 2017

    I completed rads about 12 days ago. Was really itchy but today was much better. There is light at the end of tunnel. Hang in there

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  • bravepoint
    bravepoint Member Posts: 404
    edited May 2017

    My RO prescribed a hydrocortisone cream for my itchy skin on my upper chest. The rest of my skin on my right side is just pink but not itchy yet.

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  • LAW193
    LAW193 Member Posts: 69
    edited May 2017

    Mine only gets itchy when I'min public places where it would be inappropriate to scratch at it (not entirely true but it feels like it)

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  • Connie1230
    Connie1230 Member Posts: 192
    edited May 2017

    I'm wondering how many are having radiation in the prone position as I am with only the left breast getting radiation. I'm also wondering if everyone is getting tattoos. It is an option for me. They explained that so many don't want them so now it's your choice. The alternative is a magic marker x with a clear sticker over them. I do have to be careful in the shower and I'm afraid swimmingly is out of the question. I intend to ask tomorrow if I can put waterproof bandages over them and swim. My 2 youngest grandchildren will be visiting for a week before radiation is over and the biggest drawing cards here are the pool and the beach. They're only 2 1/2 and 4 1/2 and we really enjoy playing with them in the water. I have a feeling this may be out of the question. Any thoughts on this? I've been through 10 out of 22 treatments with no side effects so far

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  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited May 2017

    I had 16 treatments on my left breast laying on my back. I also had three little dot tattoos which I don't even notice. My RO team assured me my heart would be protected. The prone position works for some women and not others. There are several factors that affect which position is most effective. I practiced daily breathing techniques when I went for my simulation to move the heart away from the radiation area. Pictures were taken and it ended up that I did not have to do the breathing, Hope this helps

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  • ReginaZ
    ReginaZ Member Posts: 41
    edited May 2017

    Connie, I would hold off on the swimming until you are completely healed from the radiation.You really want to baby that breast, as side effects can show up even after you are done with treatment! I thought I had escaped unscathed, but got really sore the week after treatment ended

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  • CindyABH
    CindyABH Member Posts: 7
    edited May 2017

    Hi all. I am suppose to start Radiation therapy this month but told my RO I need some time to think about it. I am having such a hard time deciding if I want to have it done or not. A big part of me says no because of all I've read and pictures I've seen. I'm not sure if the percent outweighs the possible effects. I'm not trying to be such a downer but am really scared and confused. Would really appreciate some input. I did have a session with my RO last week about my concerns and still left out of there with so many doubts. Has anyone had the same issues? I would love to hear if I am being silly or whatever. I've been really emotional for the last couple of days and need to make up my mind so I can move forward. I have been very positive throughout this whole thing but for the doubts and indecision I'm having at this time.

    Thank you all for listening,

    CindyABH

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  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited May 2017

    My RO also said to be careful of chlorine and preferred I didn't go in the pool and definitely no hot tubs

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  • ILSunrise
    ILSunrise Member Posts: 130
    edited May 2017

    My RO also said to avoid hot tubs. He said if I got in a pool (after I'm done with rads), to cover my chest (so I'll have a rash guard) and be careful of chlorine. He also said to put petroleum jelly over the radiated area to help shield it and create a barrier from the water and chlorine.

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  • LAW193
    LAW193 Member Posts: 69
    edited May 2017

    I am also laying on my back and I am doing the deep breathing technique to protect my heart.

    Cindy - do you know your risk of recurrence with radiation vs without? I was told that with radiation it is 5% and without it is 25-30% so that made my decision. I see you had a mastectomy so you are in a different situation than me. Ultimately it is an individualized decision so I may not be able to tell you what to decide but if you have questions about the procedure or side effects a lot of people here can share their experiences.

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  • CindyABH
    CindyABH Member Posts: 7
    edited May 2017

    Hi LAW193. Yes, one person said that it was a 4% and then when I asked my RO she said that with it was 10% and without it was 40%. She said that the 40% would be lower because of having chemo. My ONC said we were going to be aggressive with chemo so that is what we did. He said with chemo that I would be down around 15% to 20%.

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  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited May 2017

    Sunrise - are these precautions re sun and pool temporary while healing or something we have to always be careful to do to protect our radiated skin? I know sunscreen is always essential

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  • ILSunrise
    ILSunrise Member Posts: 130
    edited May 2017

    Butterfly1234 - the precautions are just temporary while the skin is healing. Of course, as you said sunscreen will always be needed. I'm somewhat fair skinned, so I generally put on a rashguard anyway if I'm going to be out by the pool for more than one hour. I also, usually spend time under an umbrella. I love the outdoors, so I do get outside whenever possible.

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  • Butterfly1234
    Butterfly1234 Member Posts: 2,432
    edited May 2017

    Thank you I love being outdoors too.

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  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited May 2017

    Cindy ABH: I totally understand how you feel. I think it took about two weeks of being very sad and trying to read all the studies to accept that radiation was also needed.

    In my case, and everyone is different, I think the surgical scar area or lymph nodes would be more likely than metastasis somewhere else. So I will go for the "scorched earth" policy of 35 treatments and be at peace with it now.

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  • RoseRN1
    RoseRN1 Member Posts: 153
    edited May 2017

    connie 1230, I'm in prone position and had tattoos. Wasn't given a choice about tattoos, but can't see them since on my back

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