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A rad onc weighs in on radiation "burns"

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  • Myleftboob
    Myleftboob Member Posts: 983
    edited March 2012
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    Alaksa

    Thank you for being so candid and am sorry for the SE you are still dealing with all this time later. You absolulty correct when you talk about the lack of research being done as far as SE's go years out from TX.  I have a neighbor that is 2 years out and she says she still feels fatigued, not as bad a during RADS but still lingers.  We were just talking the other night about this very issue

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited March 2012
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    I often feel as though we, the informed, curious and candid, are the guinea pigs for the generation of BC patients that will follow us, namely, our daughters. We shall make our voices heard.  I was so disappointed by a recent article stating that women don't tell their docs all of their side effects.  We are the voice of breast cancer and we are the voice of the future.

     Let's hope that cancer ceases to be a gigantic money-making machine in their lifetimes. That is my prayer for my daughter.

  • Patriotic
    Patriotic Member Posts: 30
    edited March 2012
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    Sara/Spinnerpom,



    Thanks for the wonderful and informative post. I like my RO but, they were a bit short on the details of what to expect (skin breaking down, "missing" skin, et al). I am someone who prefers ALL the details, ad nauseum. They are caring and efficient, however. I have 6 more to go. ugh.



    And, I hope you're right about improvements in the system for the sake of all of our daughters.

  • xocwjjb
    xocwjjb Member Posts: 2
    edited March 2012
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    hi, Spinnerpom.  Can you say where you found this post by the RO?  I would like to read more, as I am curious as to why we are all pink and toasty when there is no "burning" as such. 

  • lumpynme
    lumpynme Member Posts: 497
    edited March 2012
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    very interesting thread.

    i am almost done with AC and facing lumpectomy and rads..i really don't want MX JUST to avoid rads but i am really really not liking the stuff i am reading/hearing.....

  • Bev_22
    Bev_22 Member Posts: 4
    edited March 2012
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    Thank Youfor your post

    WOW  so

      simple to understand once someone takes the time.  Thanks to doctors that care.

    I have not started rad but at least now I have some knowledge to start with.

  • meny
    meny Member Posts: 6
    edited March 2012
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    All good info here.  I'm in decision making mode and it's tough.  DCIS,  grade 3, lumpectomy,  clean margins - left side.  I don't want to do rads.  I'm concerned about damage to the heart and lungs.  I use my voice for a living and anything that could create breathing problems terrifies me.  I'm single and my sole support.  If something were to prevent me from working, well,  then I'd have no insurance - nor roof over my head.   Surgery frightens me less.  I'm almost convinced not to do them - but today the med onc scared me after I told him that.  I just don't know that any benefit from them would offset the fear/possibility that my breathing could be compromised down the line.   Have another couple weeks or so to decide, but having a tough time.    Are there any studies at all that have looked at people 10 or 15 years out who have died or come down with serious heart or lung - or as I've just learned on this thread, thyroid - issues and tracked back their medical history to see if they ever had radiation?  I'm afraid that the reason many doctors say there's little chance of long lasting effects is because no one has ever looked at the possiblility that rads may have caused issues causing people to die or become ill from things OTHER than bc.  

  • judyfams
    judyfams Member Posts: 11
    edited March 2012
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    For the ladies who have had lumpectomies, and do not need axilla rads - ask your RO if they can do the rads in the prone position (face down).  Obviously you have to be a candidate for this - tumor not near chest wall, early stage dx and a breast larger than a "B" cup so it can hang down the table.

    Since the radiation does not come from above in the prone position, there is less scattering.  The radiation only comes from the right and left side in the prone position. I don't know why more women are not told of the possibility of having radiation in this position.  I had to find a facility that would do that for me. Personally I think it is more cost effective for these radiation facilities to have all the women in the supine position so they don't lose precious time changing the table for each patient.

    But we need to advocate for ourselves - so I encourage every women to ask about radiation in the prone position to see if you are a candidate to have that done. Especially those of you who have to radiate the left breast.

    Judy

  • Spinnerpom
    Spinnerpom Member Posts: 55
    edited March 2012
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  • Carrye
    Carrye Member Posts: 10
    edited March 2012
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    Thanks for the clarification re the discourse of burns.



    I found the information on radiation side effects on this website to be of limited help to dark skinned women like myself.



    Sure we may not notice that we have turned red, but we do notice when we have turned charcoal black. I finished rads today. My radiated breast is 75% black. It looks, in the words of my white bff, charred. The black, charred dead outer layer of skin is starting to peel off. It would be great if the website operators would acknowledge the full range of skin color changes that commonly occur. My white radiation oncologist said my changes were very typical.



    Also,



    Due to my dark skin, i have never had a sunburn in my life so i also find the common description of radiation side effects as like a bad sunburn, so be of minimal help.



    Thanks to all and best wishes to all.







  • Carrye
    Carrye Member Posts: 10
    edited March 2012
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    Thanks for the clarification re the discourse of burns.



    I found the information on radiation side effects on this website to be of limited help to dark skinned women like myself.



    Sure we may not notice that we have turned red, but we do notice when we have turned charcoal black. I finished rads today. My radiated breast is 75% black. It looks, in the words of my white bff, charred. The black, charred dead outer layer of skin is starting to peel off. It would be great if the website operators would acknowledge the full range of skin color changes that commonly occur. My white radiation oncologist said my changes were very typical.



    Also,



    Due to my dark skin, i have never had a sunburn in my life so i also find the common description of radiation side effects as like a bad sunburn, so be of minimal help.



    Thanks to all and best wishes to all.







  • Carrye
    Carrye Member Posts: 10
    edited March 2012
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    judy



    There are a lot of issues. I did radiation with breath holding which involved a device similar to a scuba mask in my mouth, clips on my nose and a pair of goggles on my eyes throughehich i saw a computer monitor . This is offered to reduce radiation nicking the heart. It forces lung in front of the heart. I dont know how prone position could be combined with this. I have the impression that newer breath holding options and the latest more accurate rads delivery equipment alleviates some of the concerns that might suggest prone positioning. At my facility xrays were always taken pre rad delivery to make sure i was in the right position mapped out by the doc and physicists, All of this meant my pre boost rads took about 30 minutes. I never had the feeling anything was being done to save time . It took as long as it took.



    I had a lump. And didnt need axil rads.



    I think bet most doc just dont think there is an evidece basis for prone rads for typical breast cancer patients. What does the recent research say?



    The use of tatoos and other markings helpnthe technicians get our bodies into the precise position each time. If we gonupside down. On the table, how would that work.

  • judyfams
    judyfams Member Posts: 11
    edited March 2012
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    Carrye,

    My radiation simulation was exactly like that in the supine position.  The simulation took about 2 hours with CT sans guiding the techs and I had tatooes marked on my breast.  Films were taken every week to make sure they were still in the right place. 

    I would lay on the table and my breast would hang down and the techs would gentl yreposition the breast so everything lined up with the markings.  It took a few minutes to get everything perfectly lined up - but it did not take 30 minutes. They were also very careful to make sure my other breast did not hang over the side of the table and would not receive any radiation.

    I just feel that I was protecting my heart, lungs and ribs in the prone position.  I was lucky that I was a candidate for this radiation position and just wanted to make others aware of another option available - if they are a candidate.

    Judy

  • meny
    meny Member Posts: 6
    edited March 2012
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    Thanks Judy,  

    THe facility I'm at only does rads in the prone position.   They explained to me how everything was positioned so as to not to touch any vital organs and it sounds far better than traditional positioning. They also told me I'm a candidate for the 3 week procedure - which gives you the same amount of radiation as 5 or 6 weeks but in higher doses for a shorter period.  But I'm still not convinced.  There IS scatter and that's a big concern for me.  I'm also small, I don't mean breast wise, I mean in general so I figure all my organs are closer together. (?)  

    I asked the RO about the breath holding, which I read about here.  She said that's often done when doing rads in the 'traditional' position.  Not necessary in the prone position because with the breast hanging down everything else is kept away.  

    Just don't know what to do.  After the medical onc telling me DCIS in itself is never dangerous because it's contained - and then having it cut out, he goes on to say I really have to have rads.     

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited March 2012
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    Both the prone positioning and breath holding technique have been shown to reduce cardiac exposure, but nothing is foolproof.  I freaked out about my heart potentially getting radiated, did tons of research, and still was never comfortable with getting rads on my L side.  Still, I did it (have 5 boosts left to go, used the breath hold respiratory gated technique).  I have had many mental freak outs about it throughout treatment...but I kept showing up.   I had to decide which I'd regret more...cancer returning in a few years with whatever scary consequence that would be...or heart issues taking me out in 10 to 15 years.   It's a horrible place to be mentally, and I feel for those who have the same fears.   Best wishes to you in making a decision meny.  

    Here is an article that reviews cardiac sparing techniques.  It may freak you out to read it, but know that if your doc is using a cardiac sparing technique, at least they are doing all they can to minimize heart damage.  

    Radiation Techniques for Early-Stage Breast Cancer After BCS: Cardiac-sparing Techniques 

  • LynGal
    LynGal Member Posts: 2
    edited March 2012
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    I'm glad I found this community.  I was against doing the 6 weeks, 5 days a week of radiation after lumpectomy--now I am convinced NOT to do it!

  • meny
    meny Member Posts: 6
    edited March 2012
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    This was just posted here in a new thread. It kind of speaks to what my gut's been telling me.

    http://www.breastcancer.org/treatment/radiation/new_research/20120309.jsp

      In the course of gathering familiy history I've discovered most of one side of my family died of heart failure..  

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited March 2012
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    After going through three rad oncs and researching until my eyes hurt, and reading posts of women whose diagnosis were similar - I have decided to go ahead and get the radiation.

    My mail lady who had breast cancer twice and radiation twice including to the axillary and chest wall has had no problems and has been cancer free since the second cancer which was seven years ago.

     One poster made a good point for me - she realized that if she didn't do rads she would be constantly worried that she had not done enough and by doing it she at least knew that she did everything she could.  Yes there are risks but there were also risks with chemo and we went through with it anyway because we want to live.

    So bottom line for me is that I will do it and then know that I did everything I could to prevent a recurrence.  I know there are recurrences in spite of rads but the percentage is small.

    The type of radiation I will get is intensity modulated radiation therapy on a machine called Tomotherapy.  The rad onc I will be going to said this machine enables them to bend the ray and go around organs.  He also assured me that during mapping if my heart is too close to the chest wall then he won't do it.  I have a small frame so my heart doesn't have a lot of room in there.  It will be interesting to see where my heart actually lies.  He also said that face down for some is not good because it causes the heart to fall closer to the chest wall.  So I will be on my back.

    From what I have learned all of the newer studies and one by Sloan Kettering which was a massive accumulation of data, radiation, even with mastectomy, has shown a significant decrease in recurrence.

    I have made the decision and in a way I am relieved.  The struggle with this was quite taxing.  Now I can move on and focus on more interesting and enjoyable things.

    Kathy

  • judyfams
    judyfams Member Posts: 11
    edited March 2012
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    Kathy,

    I don't understand one thing in your post.  Your RO said the heart falls closer to the chest wall in the prone (face down) position and that is why he is doing you in the supine (face up) position.  Even if that is true in the face down position the radiation comes to the breast from the right side and the left side so since it's not coming from above you - how is the chest wall irradiated in the prone position?

    The radiation only gets to the breast from the sides.

    Judy

  • stage1
    stage1 Member Posts: 285
    edited March 2012
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    I have become very hoarse and dry throat.  I finished rads in July.  The hoarse voice has not gone away.  I am not sure it is rads or Arimidex that causes this. 

  • Elizabeth1889
    Elizabeth1889 Member Posts: 509
    edited March 2012
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    Kathy, I am glad that you have reached a decision and you are going to have rads treatments.  Good luck and I hope everything will go well for you.

  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited March 2012
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    Judy  I don't have breasts.  I had a double mastectomy.  I know that if you have a breast or breasts and do whole breast radiation it's better face down. I think, and the operative word here is think, that he said I would be on my back. Or could it have been on my side? Not sure. But he did say that they found that putting people face down made the heart fall closer to the chest wall. So I know I won't be face down.

     He also said they put a sort of rubberized fabric and sometimes towl material on the chest so that the machine recognizes this fabric as part of the body and the radiation penetrates that plus a little underneath. That way the penetration to the chest wall is reduced to just what they want radiated - the skin and whatever bit of tissue lies beneath. This makes me think I would be on my back??

     And he said it does come ACROSS the chest and can bend to avoid the heart and lungs.  It used to come straight at you in the old days and that's why people had heart issues. 

    I will be going in for mapping at the end of this week and I will post what exactly my position will be.

    Elizabeth  Thank you for the luck.  I cherish every bit I can get.  I told my rad onc that I will trade the 28 rads treatments for at least 20 more years.  That's the deal and it's not subject to negotiation!!

    Kathy

  • Myleftboob
    Myleftboob Member Posts: 983
    edited March 2012
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    Chatsworthgirl

    I'm happy you have come to a decision with the RADS.  It really makes a world of difference once it's made isn't it.  Best of luck to you and please keep us updated on everything!

  • kdking
    kdking Member Posts: 23
    edited March 2012
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    I start my RADS tomorrow! I had a BMX with immediate DIEP reconstruction last September. I was just informed that they will be radiating four fields?? Not sure if I understand this. I was also told that my new flaps could die....not what I wanted to hear after a 18 hour surgery.







  • chatsworthgirl
    chatsworthgirl Member Posts: 197
    edited March 2012
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    I had my CT scan and mold made for the rads.  I will be lying on my back with my arms over my heas and my head turned away from the left side (wherethe cancer was) in order to keep my thyroid out of any scatter.

    It is on my back with a slight raise on the left side o fmy body because I am having axillary, chest wall and superclavicular radiation.  And, as I mentioned above, I have no breasts.

    My rad onc spoke with three other specialists.  One said no to rads two said yes.  Now that means I have had two absolute nos and six yesses.  I am still considered somewhat of a guess due to the lack of axillary node dissection and the unknown factor there.

    But, I have chosen to go ahead with it.  The doctor has promised me that if my heart is too close to the chest wall he will not radiate that.  I hope that all of my vital organs can be kept out of the field.  He said in about a week and a half they will have the mapping and scheduling done and I will begin.  28 rads.  So I have a reprieve of that time to not do anthing at all except have as much enjoyment of my present normality as possible.

    No one told me what the number of "fields" are for me.  I guess three? 

    I did not have recon after my mast.  The rad onc said there is likely some damage to the skin that could make recon difficult but I plan to wait at least a year before I consider anything.  My choise is micro fat grafting as that seems the least invasive and easiest of all recons.

    I haven't really missed my breasts until recently when I have been looking at women in movies who have lovely breasts inlow cut clothes and getting a bit of longing to have some myself so I hope that I can do the fat grafting and have at least some small breasts to put in a pretty push up bra again.

    Kathy

  • TonLee
    TonLee Member Posts: 1,589
    edited March 2012
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    KD,

    I had immediate reconstruction with TE after MX...they were pretty sure my lymphs were clear (even tho they didn't do any scans to verify it).  Well, my lymphs weren't clear and I had to take rads.  I had 4 positive, but I only let them take 4.

    My radiation fields were:

    1.  Whole breast

    2.  Super Clav

    3.  Axilla

    4.  Skin (used Bolus the entire time to cook the skin)

    And I think there may have been a 5th..crazy, I can't remember now....

    Anyway, they told me I had a 1 in 3 shot of losing my TE.

    I didn't.

    In fact, my skin held up pretty well.

    All that to say...everyone is unique and you may or may not have damage or lose your reconstruction.  It is what it is...worrying won't change a single thing. 

    Be prepared tho.  I went into rads thinking it was easier than chemo.  It was in some ways, but I wasn't mentally prepared for the EXHAUSTION.  I was so tired at about week 3...more so than chemo....but I took a lot of rads.

    So hang in there....and you might want to use Aloe and Emu Oil, as well as aquaphor.  I used 100% aloe (Trader Joes) immediately after rads, then a couple hours later Emu oil (net), and at bed time I lathered on Aquaphor. 

  • meny
    meny Member Posts: 6
    edited March 2012
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    I've been learning more about rads - especially the IMRT - and it appears they really do map it so as to keep organs out of the way.  Each rad onc I've spoken to has a different method. Some advocate prone - one - at msk - says until they map they don't know which position is better for one's particular body.   But they've all concurred I need to do something - either rads or mx and recon.   

  • LynGal
    LynGal Member Posts: 2
    edited April 2012
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    I am having a lumpectomy this Friday 4/6. I was urged to followup with 6 weeks/5 days a week of radiation. I did not want to do this. Via the internet I discovered interoperative radiation (which not offered as an option). I told my doctor what I discovered. She said it is still a new procedure and there are no long term studies, however, she put me in touch with a radiologist anyway. He agreed I am a candidate, mainly because he admitted that the normal radiation treatment could possibly damage my lung and I already have COPD. The interoperative radiation is a one-time treatment, done while you are still under, in the area of the lumpectomy, for approximately 1/2 hour. I did more research and this procedure is said to be just as effective as the standard 6 weeks/5 days a week of radiation. This procedure is not widely used yet, my hospital (Northwestern, Chicago) has only done it for about a year. Those who are facing radiation may want to look into interoperative as an option.
  • rianne2580
    rianne2580 Member Posts: 10
    edited April 2012
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     Just an FYI, not trying to persuade anyone.

    http://www.cancer.ucla.edu/Index.aspx?page=644&recordid=560&returnURL=%2Findex.aspx

    Study is Radiation Treatments Generate Cancer Stem Cells.

  • meny
    meny Member Posts: 6
    edited April 2012
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    Thank you for posting that rianne