Information about Radiation

mollieb
mollieb Member Posts: 148
in Breast Cancer #1
I finally have information about radiation:

I will have 28 radiation treatments, every weekday beginning this coming Tuesday, September 6. I won't have an electron "boost" at the end because I have had a mastectomy. That means my last treatment will be on October 13, subject to having to miss any days due to illness, in which case the missed treatment(s) will be tacked on to the end. The regularly scheduled time is 8:15 am but I can adjust when necessary, if another time is available. Each treatment will take 45 minutes to an hour, "but most of that will be waiting and setup." Most people are fatigued after treatment, but the kind of complete inability to function that I am afraid of is rare. I may or may not suffer second degree burns. The doctor seemed shocked at the notion that I will stop coming if I am burned too badly.

Medium term side effects (shortly after treatment ends) may include an inflammation of the lung, with symptoms of fever and dry cough. Longer term side effects are pericarditis, evidenced by chest pain, and coronary artery disease, but Adriamycin, the A in A/C, is more likely to cause coronary artery disease than radiation. Treatment may also weaken my ribs, making them more subject to breaking.

I don't really think they intended to sit down with me and give me all of this information, except I complained to the scheduler who called to set up my film study (on two days notice) about sitting by the phone waiting for them to call and not having any information. He asked whether it was not explained to me when I signed a consent for treatment, and then discovered that my consent for treatment, signed, last December, had expired. I didn't remember signing it, and that is unusual for me, but I was obviously in a fog. So he set up a new appointment with the resident before the film study, and I brought my husband and a list of questions to make sure I didn't leave anything out.

One of the lines on the consent said something like "I have been advised of alternative treatments and of the effect of not having this treatment." My husband asked about those two things. The resident seemed really uncomfortable with the question -- it's apparently something no one asks. The answers are "there are no alternatives" and "you will have a greater chance of recurrence." I said I wish I had been given all of this information, including, especially, the number of treatments and whether the schedule is flexible, sooner. The resident said "I don't know how we could do that." I said, "A handout?" and he thought that was a good idea, although it was clear it had never occurred to him. Weird -- who doesn't think of handouts, especially when you are giving information to people who are under stress and may forget what you tell them? Everybody else in that hospital loads me up with paper!

I hope that this will give some general information to others who are wondering what to expect, and it may suggest some questions for you to ask. The two appointments I had before actual treatment will start, in addition to meeting with the doctor, are the simulation, where they use CT or another diagnostic method to map the area they will treat, and send you home with big Xes in red or black marker all over your chest and side, some covered with tape so they won't wash off; and the film study, which takes about an hour, and really sets the stage for radiation. They gave me my tattoos yesterday after the film study (didn't hurt more than a pin prick), although they said I could get them next week if I wanted.

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    Radiation...
    I think you are experiencing " fear of the unknown..". I am on my second round of radiation...first two years ago...33 treatments then...my bc has returned in my lymph nodes....I have 7 more to go now, out of 25....of course there are side effects.....EVERYTHING has side effects....I tolerated it well the first time and am doing well with it this time...be sure and use the creams they give you, religiously! I use mine 4 times a day...but never put anything on the radiated area within 4 hours of treatment...fatigue is a factor, usually setting in, in about 3 to 4 weeks...it's not debilitating...I'm on an oral chemo 5 days a week along with rads 5 days a week, so my fatigue is worse this time...double whammy! But it doesn't keep me from functioning...and as for the time...I am in and out in less than 20 minutes...it does take them about 5 minutes to set you up then my treatment is less than 5 minutes...I carry my cream in my purse and apply it before I put my top back on....some have a harder time with rads than others...

    It's scary, I know and understand....I look at it as my job, each day..my job to get this beast under control...

    Wishing you the best..
    Hugs, Nancy
  • mollieb
    mollieb Member Posts: 148
    #3
    MAJW said:

    Radiation...
    I think you are experiencing " fear of the unknown..". I am on my second round of radiation...first two years ago...33 treatments then...my bc has returned in my lymph nodes....I have 7 more to go now, out of 25....of course there are side effects.....EVERYTHING has side effects....I tolerated it well the first time and am doing well with it this time...be sure and use the creams they give you, religiously! I use mine 4 times a day...but never put anything on the radiated area within 4 hours of treatment...fatigue is a factor, usually setting in, in about 3 to 4 weeks...it's not debilitating...I'm on an oral chemo 5 days a week along with rads 5 days a week, so my fatigue is worse this time...double whammy! But it doesn't keep me from functioning...and as for the time...I am in and out in less than 20 minutes...it does take them about 5 minutes to set you up then my treatment is less than 5 minutes...I carry my cream in my purse and apply it before I put my top back on....some have a harder time with rads than others...

    It's scary, I know and understand....I look at it as my job, each day..my job to get this beast under control...

    Wishing you the best..
    Hugs, Nancy

    Does Anyone Have a Doctor Who Doesn't Allow Creams?
    My doctor does not want me to put anything at all on my chest, unless I have an open wound. They they will give me a prescription cream. He wants me to use Dove fragrance-free soap, and no deodorant. (Not a problem. Since the mastectomy there are no sweat glands under my arm.)

    I understand the fragrance-free soap requirement, and I know you are not supposed to have anything on your chest that might interfere with the radiation. But if my chest is red and dry and painful, I would like to be able to make it feel better without waiting for a burn bad enough to cause an open wound.

    What has been your experience?

    Thanks.
  • mollieb
    mollieb Member Posts: 148
    #4
    MAJW said:

    Radiation...
    I think you are experiencing " fear of the unknown..". I am on my second round of radiation...first two years ago...33 treatments then...my bc has returned in my lymph nodes....I have 7 more to go now, out of 25....of course there are side effects.....EVERYTHING has side effects....I tolerated it well the first time and am doing well with it this time...be sure and use the creams they give you, religiously! I use mine 4 times a day...but never put anything on the radiated area within 4 hours of treatment...fatigue is a factor, usually setting in, in about 3 to 4 weeks...it's not debilitating...I'm on an oral chemo 5 days a week along with rads 5 days a week, so my fatigue is worse this time...double whammy! But it doesn't keep me from functioning...and as for the time...I am in and out in less than 20 minutes...it does take them about 5 minutes to set you up then my treatment is less than 5 minutes...I carry my cream in my purse and apply it before I put my top back on....some have a harder time with rads than others...

    It's scary, I know and understand....I look at it as my job, each day..my job to get this beast under control...

    Wishing you the best..
    Hugs, Nancy

    Thank you, Nancy
    Thanks so much. You are right about fear of the unknown, and also feeling I don't have any control, even of my schedule. For about the last month, when people have asked if I will be available for this meeting or that event, my answer has been essentially, that I don't know, and I don't know when I will know. It all came to a head this week. I finally couldn't put off a couple of things any more, so I just scheduled them, and then worried that I wouldn't be able to make it. At the same time I was hearing only horror stories and not hearing from people who didn't have problems. I think once treatments are under way, I will settle down. People at work have been wonderful. If I don't feel well I don't have to go in, and they work around my absence. But I still don't want to drop the ball on things I have promised to do, and that stresses me out.
  • Rague
    Rague Member Posts: 3,653 Member
    #5
    mollieb said:

    Does Anyone Have a Doctor Who Doesn't Allow Creams?
    My doctor does not want me to put anything at all on my chest, unless I have an open wound. They they will give me a prescription cream. He wants me to use Dove fragrance-free soap, and no deodorant. (Not a problem. Since the mastectomy there are no sweat glands under my arm.)

    I understand the fragrance-free soap requirement, and I know you are not supposed to have anything on your chest that might interfere with the radiation. But if my chest is red and dry and painful, I would like to be able to make it feel better without waiting for a burn bad enough to cause an open wound.

    What has been your experience?

    Thanks.

    I was told not to put any
    I was told not to put any creams on for at least 4 hrs BEFORE TX but after to keep well moisturized - his Nurse was always giving me samples to use when I ran out.

    I burned VERY bad after the 25 rads I had. Have "Good" scars from all the burns and Almost wound up in a burn unit. The 'script cream that usually works great is Silvadene/Sulfadene but I'm allergic to Sulfa so it was not an option. Domebro soaks are what finally got it healed.
  • Tkitty
    Tkitty Member Posts: 56
    #6
    mollieb said:

    Thank you, Nancy
    Thanks so much. You are right about fear of the unknown, and also feeling I don't have any control, even of my schedule. For about the last month, when people have asked if I will be available for this meeting or that event, my answer has been essentially, that I don't know, and I don't know when I will know. It all came to a head this week. I finally couldn't put off a couple of things any more, so I just scheduled them, and then worried that I wouldn't be able to make it. At the same time I was hearing only horror stories and not hearing from people who didn't have problems. I think once treatments are under way, I will settle down. People at work have been wonderful. If I don't feel well I don't have to go in, and they work around my absence. But I still don't want to drop the ball on things I have promised to do, and that stresses me out.

    Radiation
    I am currently getting radiation treatments and am continuing to work. It takes me about 30 minutes to get undressed, get the treatment and then get dressed and back to my office. I haven't had any debilitating fatigue. I have 6 treatments left to go and my chest and under arm are dark red, but as the area is mostly still numb, I don't have much pain. More like pin pricks when the radiation is coming down on my skin. I have more issues with not getting my work done due to lengthy meetings that from the radiation treatments. I was scared of the unknown, but it hasn't been that bad. Getting to know my radiation nurses very well.
    Good luck to you.
  • sinee
    sinee Member Posts: 196 Member
    #7
    mollieb said:

    Does Anyone Have a Doctor Who Doesn't Allow Creams?
    My doctor does not want me to put anything at all on my chest, unless I have an open wound. They they will give me a prescription cream. He wants me to use Dove fragrance-free soap, and no deodorant. (Not a problem. Since the mastectomy there are no sweat glands under my arm.)

    I understand the fragrance-free soap requirement, and I know you are not supposed to have anything on your chest that might interfere with the radiation. But if my chest is red and dry and painful, I would like to be able to make it feel better without waiting for a burn bad enough to cause an open wound.

    What has been your experience?

    Thanks.

    The prescription
    is called Bliss...unless there is another one I don't know about...if you experience pain and a burn, they will keep a very close watch on you, not to worry, you simply ask for the prescription...it is wonderful as it numbs the area a bit too, so I put it on 3 or 4 times a day and saved at least one dose for bedtime...nothing like a little numbness of pain to let you fall asleep...I used Dove also. They will watch for the redness and you can too. It will be ok, just speak up and ask when you need it...the time will go quickly, and before you know it, it will be over and you will be asking, why am I so depressed now...jump back on here and chat about it, we are all here, and so many of us have gone through the process you are now facing...I was a little tired, but if I napped right when I got home, I had enough enegy for the day...take care, be good to you, nap when you are tired and take it easy....Sinee
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #8
    Tkitty said:

    Radiation
    I am currently getting radiation treatments and am continuing to work. It takes me about 30 minutes to get undressed, get the treatment and then get dressed and back to my office. I haven't had any debilitating fatigue. I have 6 treatments left to go and my chest and under arm are dark red, but as the area is mostly still numb, I don't have much pain. More like pin pricks when the radiation is coming down on my skin. I have more issues with not getting my work done due to lengthy meetings that from the radiation treatments. I was scared of the unknown, but it hasn't been that bad. Getting to know my radiation nurses very well.
    Good luck to you.

    Radiation
    Radiation wasn't that bad for me. For me the 5 day a week commitment for 33 or 36 weeks seemed daunting, but I soon fell into a routine.
    The techs were so nice and friendly that I never minded going at all. In fact I missed them when I was done.

    I did as I was told, which was cream twice a day from the start and no deoderant and no bra. But being large chested, I had to start wearing a bra so I would put cotton hankeys under the radiated breast to help with the irritation of the bra. It worked well.

    I was very tired usually by mid day, I had my treatments at 8:30 am. I got a burn on my collarbone and a little up my neck BUT only because I didn't apply the cream up there. I had no idea they were radiating that high. I only put the cream on the breast.

    They gave me an aloe cream first then Aquapore (not sure of spelling) and Wound Care for the burn. That was a gel that I put in the fridge and the cold made me go Ahhhhhhh....felt great.

    All my best,
    Wanda
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
    #9
    Lighthouse_7 said:

    Radiation
    Radiation wasn't that bad for me. For me the 5 day a week commitment for 33 or 36 weeks seemed daunting, but I soon fell into a routine.
    The techs were so nice and friendly that I never minded going at all. In fact I missed them when I was done.

    I did as I was told, which was cream twice a day from the start and no deoderant and no bra. But being large chested, I had to start wearing a bra so I would put cotton hankeys under the radiated breast to help with the irritation of the bra. It worked well.

    I was very tired usually by mid day, I had my treatments at 8:30 am. I got a burn on my collarbone and a little up my neck BUT only because I didn't apply the cream up there. I had no idea they were radiating that high. I only put the cream on the breast.

    They gave me an aloe cream first then Aquapore (not sure of spelling) and Wound Care for the burn. That was a gel that I put in the fridge and the cold made me go Ahhhhhhh....felt great.

    All my best,
    Wanda

    DOVE SOAP
    Sorry I forgot the most important thing. I was told to use only Dove soap (no scent). This is easily rinsed off with no residue and no scent was very important. Now I still use Dove but can buy the scented ones or just the Dove White, which has a nice clean smell.
  • grams2jc
    grams2jc Member Posts: 756
    #10
    Radiation
    I am one of those who didn't do well with radiation. Not so much the physical, the mental. For an IRRATIONAL reason, I hated it. That was just me. We all have our own things that get to us, spiders, snakes, mice, etc. I guess radiation goes on my list.

    Apparently my Radiation Oncologist is very conservative as he told me that most of his patients have to take a break for a few days and that is not the experience that I see for most of the ladies here. He told me pure aloe gel until I became red and then Aquafor until I needed the script creams which wasn't until the last 8 of 33 treatments. I might note that I am very fair skinned and had a left mastectomy. The rads techs told me that the products on my skin during treatment would act as an extra layer of skin and cause more external burning....so we made sure it was wiped off before treatment. Because I had a mast. they used a bollus (sp?) which looked like a rectangular gel pad on top of my chest to let the rads get to the depth internally that they needed to be, unfortunately this causes more external skin issues.

    I did find that I actually gained energy during rads, and while I started out taking a 15 minute nap in the parking lot before treatment (treatment was an hour from work so I built in a little extra time for traffic, weather, etc) by the end I didn't need that nap and was still working my 8 hours daily in addition to the 2 hour round trip for treatment.

    This wasn't something any of us would choose to do but physically it is very doable. Please don't be overwhelmed like I was by treatment delays due to skin condition, now 2 months after the last treatment I am doing great just have a weird "farmer's tan".

    Glad you got your info. not knowing is the hardest. You will do great!

    Jennifer
  • LVG
    LVG Member Posts: 128
    #11
    grams2jc said:

    Radiation
    I am one of those who didn't do well with radiation. Not so much the physical, the mental. For an IRRATIONAL reason, I hated it. That was just me. We all have our own things that get to us, spiders, snakes, mice, etc. I guess radiation goes on my list.

    Apparently my Radiation Oncologist is very conservative as he told me that most of his patients have to take a break for a few days and that is not the experience that I see for most of the ladies here. He told me pure aloe gel until I became red and then Aquafor until I needed the script creams which wasn't until the last 8 of 33 treatments. I might note that I am very fair skinned and had a left mastectomy. The rads techs told me that the products on my skin during treatment would act as an extra layer of skin and cause more external burning....so we made sure it was wiped off before treatment. Because I had a mast. they used a bollus (sp?) which looked like a rectangular gel pad on top of my chest to let the rads get to the depth internally that they needed to be, unfortunately this causes more external skin issues.

    I did find that I actually gained energy during rads, and while I started out taking a 15 minute nap in the parking lot before treatment (treatment was an hour from work so I built in a little extra time for traffic, weather, etc) by the end I didn't need that nap and was still working my 8 hours daily in addition to the 2 hour round trip for treatment.

    This wasn't something any of us would choose to do but physically it is very doable. Please don't be overwhelmed like I was by treatment delays due to skin condition, now 2 months after the last treatment I am doing great just have a weird "farmer's tan".

    Glad you got your info. not knowing is the hardest. You will do great!

    Jennifer

    Radiation...
    I wish you much luck on your radiation journey. I have to agree with the person who said it's the fear of the unknown. I was crazy worried, because I couldn't understand this radiation thing? 5 days per week sounded like it was going to take over my life - I just couldn't understand it and called their twice before my 1st appointment with questions. I was able to let my guards down after the first couple of treatments, because everyone is soooo extra nice and caring. You get to know each person and they help you to relax and answer all questions and offer much needed advice. I have 4 left and I can tell you, it's much more doable than chemotherapy.

    Best of luck to you.
  • mollieb
    mollieb Member Posts: 148
    #12
    LVG said:

    Radiation...
    I wish you much luck on your radiation journey. I have to agree with the person who said it's the fear of the unknown. I was crazy worried, because I couldn't understand this radiation thing? 5 days per week sounded like it was going to take over my life - I just couldn't understand it and called their twice before my 1st appointment with questions. I was able to let my guards down after the first couple of treatments, because everyone is soooo extra nice and caring. You get to know each person and they help you to relax and answer all questions and offer much needed advice. I have 4 left and I can tell you, it's much more doable than chemotherapy.

    Best of luck to you.

    First Treatment Today
    I had my first treatment today. I had to wait more than an hour because they were having trouble with the machine. (Now that is confidence-inspiring!) But I told them I still had a lot of questions and the lead radiation oncologist was available, so we talked. I asked why they are so adamant about fragrances (not that I care about fragrance) when Dove unscented, which they want me to use, contains fragrance. I explained the difference between "fragrance free" and "unscented," which he was unaware of. I said the whole thing seems kind of medieval to me, and he agreed that it's "primitive." I said that when I can see they are talking through their hats about things where I have a frame of reference (as the resident was on a number of issues last week), it worries me that they are on equally shaky ground about things where I am in the dark. He asked if I thought I needed to see a counselor, and I said "No, I need to have this explained to me in words of three syllables or more!" My point was that I really want more information, and that I am capable of understanding explanations that go beneath the surface. He helped a lot. He is not the big cheese for nothing.

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