Spring 2014 Rads

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  • TB90
    TB90 Member Posts: 992
    edited March 2014

    My RO doesn't believe in the breathing technique.  Ever wonder how there are so many variations in radiation treatment?? How can they all be right? I would sure feel better if they could all agree on the "best" practice. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    TB, they do seem to vary a lot. My RO doesn't want me using creams or lotions until I have a problem. It's so different from everyone else. I sure hope I'm not doing damage by not using anything. Sure makes you wonder why they aren't all on the same page.

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited March 2014

    is anyone else having prone (face down) radiation?  Seems to be the new thing.  I'll have five weeks face down and then the last week on my back for the boost.

  • Macy187833
    Macy187833 Member Posts: 182
    edited March 2014

    Just found out my consult is Monday, March 10th. Any suggestions as to what I should be asking about my rads? This is all new territory for me. 

    Someone asked if anyone was having rads after a mastectomy and yes, I am. :)

  • dragonfly45
    dragonfly45 Member Posts: 25
    edited March 2014

    MsJean63,  I have been using Aquaphore now for over 3 weeks. I have completed 17of 30.  I just take a small amount and rub my hands together then slather my breast.  I also use the leftover from my hands on my other breast and then my legs.  When i apply in the morning after rads i do put on a tee shirt just to protect my sweaters.  But even then they wash up fine.  I have not had any breakdown of the tissue yet, but do have an achy breast.  This is normal and was advised to take a pain reliever.  Everyone have a good day!

  • sunnyside70
    sunnyside70 Member Posts: 12
    edited March 2014

    QuirkyGirl - I'm having prone position radiation to the left breast.  Reasoning for them doing my prone position was due to where the tumor was (it was directly against my chest wall), therefore they wanted to radiate with the least exposure possible to the heart - this fit the bill and they were able to get the proper angles that they needed.  They told me that if they were not able to get the proper angles, then it would have had to have been supine (face up), and there would have to be the breathing apparatus involved to inflate the lungs at the proper time and bring the chest away from the heart.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Macy, here is a list that LizzieK posted on the winter rads thread. I printed it out and took it with me when I went for my consult:

    • What will be frequency and
      duration of treatment? (days per week for how many weeks)
    • How long does each treatment take?
    • Will you do the radiation with me lying on my back or my stomach?
    • Is partial breast irradiation an option for me? If not, why?
    • Is
      an accelerated schedule an option for me? If not, why?(On both of
      these if it is because they don't offer it you may wish to seek care
      elsewhere if you are a candidate - Stage 1 no nodes)
    • How much radiation in total will I receive?
    • What type of equipment will you be using? (IMRT, 3D)
    • What will you do to minimize the amount of radiation to my heart (more
      of a concern if your cancer is on the left side, like mine)
    • Do you utilize breath hold to minimize heart
      exposure?
    • What is the risk of second primary tumor from the radiation?
    • What are the possible side effects of
      each treatment option, both in the short term and the long term?
    • What can be done to relieve the possible
      side effects? (burning, fatigue mostly)
    • How will this treatment affect my daily
      life? Will I be able to work, exercise, and perform my usual activities?
    • How long after treatment will I return
      to normal activities?
    • What is the risk of recurrence if I don't get radiation versus if I do?
    • What is the survival rate if I don't get radiation versus if I do?
    • If I get radiation and then get another cancer in that breast I will have
      to have an mastectomy because you can't usually get radiated twice in
      the same area. There is a study showing that older woman may not need
      radiation (if early stage, no nodes). If I don't have radiation and it
      reoccurs I could then have a lumpectomy and radiation. Explain your
      rationale for doing radiation now?
    • Will you be able to accommodate my schedule (work, travel time, etc.)
  • thegoddessjen
    thegoddessjen Member Posts: 13
    edited March 2014

    Hi - completely new here.  Started rad 2/25.  Had 7/33 treatments so far, prone position.  No ill effects yet.  Using Miaderm 2-3 x per day.  My docs just emphasized no-alcohol moisturizer to help with skin dryness as we go.

    Kind of feeling "odd-girl out" here not having chosen to pursue chemo as I see most everyone has had it.  Good to see BigD higher up in the posts also had oncotype-DX and waited for results.  Mine rated this cancer as a 14 so here I am in rad treatment instead. 

  • mapgirl12
    mapgirl12 Member Posts: 111
    edited March 2014

    thegoddessjen,

    I was suppose to only have radiation but in one of my nodes there was a 1mm cancer cell.  So now I am half way through chemo and will start radiation after that.

    Glad to hear that you did not chose chemo!

  • Macy187833
    Macy187833 Member Posts: 182
    edited March 2014

    SlowDeepBreaths, thank you! That list of questions is so helpful. There is so much I don't understand about radiation. I just kind of concentrated on getting through chemo and now that chemo is over (yesterday!) and my new rads appointment is scheduled, my head is spinning a little bit. Thanks again!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Macy, you're welcome. I was overwhelmed before rads started too. It does get better :)

  • AnnFM
    AnnFM Member Posts: 21
    edited March 2014

    My RO has not recommended any lotions or creams yet. Starting rads on 3/10. I am 4 wks PFC and have just started having the worst joint pain. What is this all about? I feel like I can't even walk upstairs. Taste buds are still bad as well. Any suggestions on how to battle this fatigue?

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited March 2014

    Hi ladies, I am 3 wks PFC and will have my RO planning on the 14th. Thanks for your helpful tips so far!

    RO was initially thinking 30+ 3 boosts after my biopsy; surgery pathology changed to a lower grade; wondering if any of you are doing the shorter protocol and why your RO would recommend that vs the longer...

    I want to get the best treatment and be aggressive, but don't want over-kill! My tumor was fairly close to my chest wall, but got clear margins.

    Thanks in advance!

     


     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    AnnFM, I see that you are on Herceptin. I was having horrible joint pain - hips were especially bad. One of the ladies on another thread suggested I have them slow down my Herceptin infusion. They were infusing at 30 min. I had them bump it up to an hour and it made a HUGE difference. You might want to ask about that. She did hers at 90 min.

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited March 2014

    keepthefaith - any chance you're over 50?  The shorter protocol is becoming more the standard for women over 50 with clear nodes.  I was 45 at diagnosis which is shy my RO wants me to go with 30.

  • AnnFM
    AnnFM Member Posts: 21
    edited March 2014

    Slowdeepbreaths,

    Thanks for the suggestion, I had my second full dose Herceptin this Monday at 30 min infusion. I'll ask for longer infusion next time, the timing of the pain does coordinate with the herceptin infusion.

    Girl strong, had left MX and doing rads. Not planning on doing any reconstruction. Wondering how it will be to go without a bra and prosthesis during rads. Hard to be a uniboob in public.

  • TB90
    TB90 Member Posts: 992
    edited March 2014

    Although different RO's prefer different regiments, the real factor is the total amount of accumulated radiation that you receive.  I forget the technical term (greys?).  They recommend different amounts for different situations and then once the amount is determined, it can be delivered over a shorter or longer term.  Some RO's simply have a preference and some believe that skin reactions differ accordingly and some consider the convenience of treatments, etc.  Most studies that I have read find equal effectiveness in the short and long protocol.  And then boosts are an added consideration.  But a true comparison would take into account the, let's just say number of radiation measures, rather than the number of weeks that they are delivered in.

    Another factor is whether or not the radiation is to the breast or to the chest wall.  So it is difficult to compare unless all factors are considered.  My RO states that boosts are not given to mx, but I have seen others receive boosts to their scars.  Guess we have to have some faith in our RO.  My RO is very highly regarded and the students state that they all compete to study under him.  But I feel that he is also very old school and would have provided me with the shorter protocol if I had insisted, but he was more comfortable with the traditional longer protocol.  At that point I was so exhausted from all the research and decisions, that I left that one up to him.

    Ann:  I have had no difficulty with going "free" during radiation treatment.  But the other one is quite small, so that helps.  I am wearing cotton cami's.  Some have a bit more support than others.  I have found that others do not notice.  Some of the teens I work with "sneak a peek".  They are so sweet about it and try to be so inconspicuous.  I am touched that they even care to try be discreet rather than blurting out some crude comment :)       

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited March 2014

    tb90, thanks for the info. I trust my RO and I know he will do what's best for me. I guess I am afraid of long term SE's more than anything.

    thanks, Quirkygirl; yes, I am 58.

    I'm anxious to see what he will prescribe. My rads appts will be about 30 mins away, so not a huge deal.

    Enjoy your week-end, ladies!

     

     

  • Pam358
    Pam358 Member Posts: 294
    edited March 2014

    Welcome Ms Jean63, StillRunningNLM, Girlstrong and The Goddessjen  !!!!

    I haven't been on this site as much because my mother-in-law has been in the hospital and then rehab so I've been trying to help out when I can at the facility and with some stuff at my in-laws house.  We are heading back down to the rehab center tonight for the weekend. I'm glad it happened in between my treatments so I could help out.

    It will be off to my first radiation treatment on Monday!

  • Phebe38
    Phebe38 Member Posts: 197
    edited March 2014

    hi everyone: I just finished chemo taxotere and herceptin. My next infusion for herceptin is March 18 for 1/2 hour which is different then 2 1/2 hours. I will get herceptin for a year I go for my simulation on March 24th. Then on April 1st, I start my radiation for five weeks. I read all of your posts. It seems like some of you wl drive to get your rads done. Because of the distance I have to stay there Monday to Friday then I come home on weekends. For me the unknown is the scary part. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Pam, sorry to hear about your MIL. Good luck on Monday!

    Phebe, I was really nervous about starting rads too. Maybe it's the fear of the unknown. I just finished my second week, and so far it's going good. The drive is a bit exhausting but not as bad as TB's. Congratulations on being done with chemo!!!

  • Phebe38
    Phebe38 Member Posts: 197
    edited March 2014

    Hi just checking if this works

  • AnnFM
    AnnFM Member Posts: 21
    edited March 2014

    Hey Phebe38,

    Sorry you have to travel away from your home for rad tx, hopefully you are with family or friends. I went today for a mock radiation scan to check if all their calculations etc are correct. It was a bit weird having the scanner move around me and see the red laser crosshairs on my chest. I had never imagined that I would be going through this. Nothing hurt, but it was a bit sad to me. On a more humorous note, I felt like I was in the basement in the movie War of the Worlds with Tom Cruise, as the aliens scanned the basement looking for humans.  

    We made it through the surgery and the chemo, we'll make it through the rad tx. One day at a time.

    I also am Her2 positive and had my herceptin small doses with my taxol, and now I've had two full doses of herceptin. The first infused over 1 hour, the second  time, infusion was only 30 mins. I've had muscle and joint pain since second. I'm going to ask for slower infusions next time to see if that helps. Just an FYI for you.

  • TB90
    TB90 Member Posts: 992
    edited March 2014

    Phebe:  I see you are from Prince Albert, Sk.  I grew up in Lloydminster.  Now live in Beach country north of Winnipeg, but we have lived all across Canada.  Where do you have to go for rads?  Saskatoon? I just met a woman staying in Wpg at a hotel attached to our hospital as her commute would be too long.  I sort of envied her as my commute does get exhausting, especially with the snow storms that we have had recently. But then again, she is alone and the days must get long.  Hope you have some close friends or family that you can stay with.  And if not, hope our health care system is paying for your stay :)  I was extremely anxious about rads and as they were very optional for me, I really stressed over the decision.  At this point, I have the slight feeling of a sunburn and mild itching. My radiation is to the chest wall following a mx and it is supposed to be harder on the skin than if you are having rads to the breast. But so far, easier than I could have imagined.  Hope I did not just jinx myself!

    TeamKim:   The weather just has to be better for you than it was for me.  Praying for good commuting conditions for you.  Once you get started, it seems to go quite quickly and for me, I started to relax and worry much less.

    Ann:  I visualize positive things too when I am receiving rads.  When the table sort of jerks to align me, it reminds me of when the rides at Disneyworld first start off.  So that is what I think about.  It sort of works for me and now I often go off into some sort of memory and forget all about what is happening around me.

    Slow:  We are very close together in this journey.  How are your SE's if any?  

    I love the ideal of the lottery tickets, especially as someone I know very well just won one million!! Did I tell you how jealous I am?SickThis is me green with envy. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    TB, SE aren't too bad. I'm sleepy a lot which is good for me, because I typically can't sleep at night. Hurts just a tad when I breathe in a bit, and I've developed a bit of a dry cough - started this morning. No skin issues at all. A little sore inside where I get radiated, but not too bad at all. Finished 9/31 today. How are your SE's?

  • Phebe38
    Phebe38 Member Posts: 197
    edited March 2014

    slowdeepbreath: what's MIL? Yes I fear of the unknow . I end up having to go and see a doctor and get tested of white cells. White cells sky rocket to 22. Normal is between 4 to. 11. Hemoglobin 15 that's high too.?so I'm continuing to take ciprofloxacin does another week. They say I have infection somewhere but not sure where. Why am I so interested in taking medication  and ask for blood work? Cuz I just about died. The last two chemo treatments I didn't know that my prescription say two refills. It's so important to read labels. I end up in emergency. To make a long short they kept me in isolation overnight. My white cells were 0.7 and temp 39.8c  but amazing when they check on temp it was back to normal. For antibiotics they gave me ciprofloxacin for a week. That was scary! 

  • Pam358
    Pam358 Member Posts: 294
    edited March 2014

    Welcome Phebe38!  MIL = mother-in-law

  • inks
    inks Member Posts: 746
    edited March 2014

    TB90 - That's what my RO said about rads after mastectomy as well. That we would burn more since we do not have much tissue left to radiate. I'm getting it for the axilla, chest wall an subclavicle. I have tissue expanders in too, so I hope it does not mess up my reconstruction. I am still waiting on 2 more fills and will start in the middle of april. I also asked my RO about the radiation fatigue in younger women but she just brushed it off by saying that they do not get many younger women there. I'm 37 so I would like to hear anyones experience who is around 40.

  • TB90
    TB90 Member Posts: 992
    edited March 2014

    Slow:  I did not think that I was experiencing any fatigue, but after getting home today after treatment, I went for a nap and slept for three hours.  Very unlike me, but I woke up and felt great.  My skin is slightly red with one spot a bit itchy.  Hoping it holds up for 14 more zaps!

  • TB90
    TB90 Member Posts: 992
    edited March 2014

    Pam:  My comment to TeamKim was actually for you!  I mixed up the threads in my head as you two are the creators of these two radiation threads.  Thanks to both of you. So Pam, hoping for good weather for you on Monday.

     Inks, I think that fatigue is hit and miss regardless of age.  I researched radiation therapy to death and they never distinguished SE's for age.  More on your state of health, fitness, etc. whether or not you were previously on chemo, ......

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