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A rad onc weighs in on radiation "burns"

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  • luvmygoats
    luvmygoats Member Posts: 2,484
    edited December 2012
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    Kelly - I used Domeboro for just a short while 1 or 2 soaks. Mine was not too open/raw. I think the Silvadene is the best of the bunch though my RO was keen for the Domeboro. Silvadene antibacterial/soothing. Careful it can stain, skin who cares at this point comfort matters but your clothing might be different. Aquaphor as well though it is harder to spread on inflamed tissue. I'm sure someone else will chime in who had similar problems. Your RO sounds less than sympathetic and not sure what your "less than healthy ways" has to do with radiation. Even if you were an enthusiastic tanner under your arm is not where most people tan. Boosts will be directed to the scar so underarm will be spared. Tolerated boosts with no problem. Board just getting more active this evening after being quiet during the day. Hoping someone else jumps on board. Keep us informed. BCO is the best!!!  I care and so will others here.

  • alexmom55
    alexmom55 Member Posts: 3
    edited December 2012
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    Thanks luvmygoats.  The Domeboro stings at first but then it feels good.  The Silvadene also feels good and soothes.  I've already stained my sheets but I really don't care.  Anything that makes it feel better.  I was glad to hear that the boosts don't hit the underarm.  I didn't even know about the boosts until one of my friends mentioned it a couple of weeks ago so I asked my RO.  I guess I'm on a "need to know" basis with this treatment.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited December 2012
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    I'm off to radiation in the new year and feeling very nervous. The information here has been great!

  • alexmom55
    alexmom55 Member Posts: 3
    edited December 2012
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    Hi Tammy.  You'll do great!  You don't feel anything when you get the treatment and you won't notice any discomfort or redness until later in your treatment.  It turns red first and doesn't hurt.  My reaction doesn't happen to very many women, I was just one of the unlucky few.  Start putting Miaderm or some other unscented lotion on from the very beginning to keep your skin supple and healthy and don't hesitate to ask your RO for some Aquaphor samples or a prescription for Silvadene when it starts to get tender.

    The radiation is so much better than chemo.  It's a very short time period and you don't get uncomfortable until the end and that doesn't last very long.  It's a small price to pay for such huge benefits.  Keep us posted about your treatment!  Kelly

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited December 2012
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    Thanks for the advice. It is good to be prepared and to know what to ask.



    I'll keep you posted!

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited January 2013
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    I have now had 2 treatments and I have already developed a rash on my breast.... I see the Rad Oncologist tomorrow. I am now quite worried!

  • Madelyn
    Madelyn Member Posts: 24
    edited January 2013
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    I'm 26/28.  I used Miaderm/aquaphor but really loved pure aloe gel in the refrigerator...feels great.  Techs say my skin looks great.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited January 2013
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    Dear Madelyn, I'm 7/32 now. I have some pure aloe gel so I'll try the refrigerator! I live in Australia and it is around 113 deg today so that sounds great! Good to hear you are doing well. Cheers

  • windchimes58
    windchimes58 Member Posts: 2
    edited January 2013
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    Your info is helpful--even if it is long winded!  However, my RO states that itis very important to apply some kind of creme at least twice a day(but not immediately before the rad TX)!!  And to start applying creme when the treatment regimen begins!!  RO states that this will help skin stay intact.

  • andy7
    andy7 Member Posts: 1
    edited January 2013
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    I so agree with spinnerpom on praying that our daughters aren't subjected to the conflict of interest that's inevitable when so much money is involved. When I found out that oncologists make ALL of their money by selling chemo drugs at a huge markup, I knew I was in for a heck of a sales pitch, and I got one. People tell me I have an "adversarial" attitude towards my oncologist, and I do. At this point, I trust no one. My (famous) surgeon took me thru 2 surgeries, and didn;t do this incision she described either time. The only instructions I got were to avoid"lifting my own weight or swimming the channel". No lie. As a result I have  a breast full of painful adhesions. Now I hear that rads make them worse. Right now, I feel like being done with them all-2 surgeries have left a bit of breast w/a nipple, I had stage 1,grade 1, invasive lobular-2cm, with clean margins BOTH times, no nodes, e+p+ her-. According to my "team" I needed the works-chemo included. Then he tells me they advise chemo for all breast cancers from stage 1 on. Does quality of life even matter anymore? I'm so discouraged, and I feel like a big baby listening to all the brave women who had radiation w/o a second thought, and accept the awful side effects with equanimity. Does anyone out there feel like I do? Thanks for the chance to vent!

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited January 2013
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    Andy - I think we all need to make our own decisions. It's our life.



    I was "borderline" for chemo and decided not to do it. In the end I think my oncologist felt comfortable with my decision. She told me based on my results I "COULD" have chemo but that wasn't enough reason for me. I do think she had my best interests at heart and they have probably seen many good prognosis cases go badly.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Hi ladies

    Gearing up for the next round in this fight. 1/23 lump/snb healing stitches out Tue&Wed Onc to discuss my path & options- rads 6 wk for sure.

    When should I begin moisturizing my breast? Best topic ointment? How soon after surgery did you all begin rads. Are any of you doing reconstruction?

    I did read the ROs thread on rads great input.

    I want to know as much as possible to be informed & try to understand just what is happily in tx and then work with it & not against. Hope my windsurfing & kayaking days are not over I so love the water.

    Thx

  • Yawls
    Yawls Member Posts: 16
    edited February 2013
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    Hi all, am at 20/34 have bright red skin, purple giant nipple, and virtually no pain! Nothing is peeling, weeping, or oozing. My incision site is also purple, compared to the red skin around it. I have been using Remedy Skin Repair lotion that my RO keeps me supplied with. It smells good and when I am done, I use what's left on my hands on my face...it has never looked smoother!

    The down side? I rush everyday to tx from work, my boss lets me leave early each day. It's about a 45 minute drive that I try to make in exactly 45 minutes! Anyway I got there last Friday and was met by my two lovely techs withe the news that the machine was down so no treatment. It was supposed to be my 1/2 way treatment, a mile stone in my head. They didn't have my cell so they couldn't get me ahead of time. I went home worried. They tell you at the start of treatment not to plan on even missing one day. I so took that to heart! Went home with the promise that the machine would be fixed on Monday if not they would call. Uneventful weekend. Call early Monday, machine still down...I had no idea that this break in my treatment flow could so totally wig me out. Nightmares, anxiety by the time the machine was up on Tuesday, I could hardly stand to lay on the table. Mind you I had done it 15 other days without even a twinge...I was sure the machine wasn't fixed and it was nuking me to death. I was a mess. Of course when I was done I made a joke withe the tech. That night I had the momma of all nightmares. Could barely get up and talk my self into going to work the next morning.

    Thankfully, I have the best rads team! It was Dr. day so as soon as the nurse closed the door and asked so...I burst into tears, he listened, went out to see RO before you know it, I have a dose of Ativan and a prescription for Xanax.

    I would never have guessed that I was wound so tight, especially because my body seemed to really cooperate with the rads treatment. The moral of my story, we all need help sometimes, BC is heavy duty stuff! Our treatments take a toll as much on our minds as our bodies, pay attention to what your body is telling you and don't be to shy to melt down if you need to.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Hey Yawls- congrats on being 60 percent done you go girl!

    Wow working & doing rads too! I'm wound pretty tight I wept for solid day(s) after hearing my margins&nodes nodes clear. So I can imagine the anxiety with the machine. Sounds like you have a sharp sensitive team.

    I will heed your advice (((hugs)))

  • BilateralBeauties
    BilateralBeauties Member Posts: 12
    edited February 2013
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    I used Miaderm, started a week before rads. When blistered switched to aquaphor. I had a couple of days of disrupted treatment. It seems more common than not. I was bilateral and busty so had a tough time. No limitations now 1 year later. Keep up stretching especially after rads ends. Keep pecs stretched. Good luck.

  • terrikoala
    terrikoala Member Posts: 5
    edited February 2013
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    Just wanted to drop by and add one thing to look for after RADS are completed and the burn has gone away. I had a really bad rads burn (wound) on upper chest on my older and thus thinnner chest skin and treated with several things and the one that worked the best is also used for 'wounds'....SilverMed Antimicrobial Hydrogel.  I was having double daily RADS doses and the burn was so painful that RO wanted me to try Silvadene but I am allergic to sulfa so RO had sample of  Silvefrmed and it worked really well almost immediately.  The breast itself  had only turned a llittle pink and never bothered me much. Once the burn was gone (two weeks) I noticed that as my hand would brush by my nipple I would feel something 'sharp' . It reminded me of the pieces of stitches that poked up thru the skin after surgery. Nipple did not look inflamed and upon closer inspection I saw little white spikey things sticking out of it and thought.....rut roh. Before panic set in I very gently 'picked' at one with a fingernail and it popped off so I continued with several more and then put antibiotic on it. Turned out it was just the way a nipple 'peels'. Its all back to normal and I am so grateful these days for so many things.

    Good luck to all my 'sisters' out there.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited February 2013
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    RMlulu, Start moisturising as soon as possible. I was very, very nervous starting rads as I have pale delicate skin with eczema. I started off badly with a rash on day 2 due to the recommended moisturiser! I switched moisturisers and treated the rash. I now apply my moisturiser 3 times a day and drink plenty of water to keep hydrated. It is now 18/32 and all is going OK, maybe just slightly reddened skin. We all seem to react to the treatment so differently so I hope you're one of the lucky ones who breezes through.



    Yawls, totally agree about the melt down advice. At work I'm known for being calm and cool BUT when I got the rash on day 2 I was in a panic thinking of how bad it could get get by day 32. I think I also panicked hubby! This stuff is tough and we should let it all out now and then.



    Bilateral beauties, thanks for the pecs stretching advice. I've noticed the shoulder on the treatment side pulling in, probably a protection mechanism.



    Best wishes to all!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Thx TammyM43

    What moisturizer did you find worked the best for you?

    I have ordered miraderm...using eucerin around my stitches for now. Going to health store for aloe verde jel. Fair skin burn & tan beach babe.

    Congrats on 18/32! I appreciate everyone's candor this is a full on assault ...good bad ugly and victory.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited February 2013
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    RMlulu, I am using Epaderm from Molnlycke Healthcare. It is a specialty cream for eczema and has a lovely texture. It is a little expensive but I am happy with it.

  • Yawls
    Yawls Member Posts: 16
    edited February 2013
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    Hi all home and hunkered down. Day 22/34 tech says I may see some skin breakdown underneath along my bra line soon...I am all set with plan B. Hoping not to have to use it! Long day today, almost dozed on the table, thus in bed with the iPad at 7:30. I can't believe how cold I can get, and I'm in Florida...the more tired I get the colder I get, any one else in the same boat?

    Tammy, I think that was part of my meltdown. My RO mentioned in an offhand way at the beginning, that there probably wouldn't be too much evidence of the rads until the second half of treatment...if there was going to be any. I of course zeroed in on the first part of his statement. So when the machine broke down at exactly the half way point, all I could think of was how much worse it was going to get and how much longer is was going to last! Not the most positive (or rational) thinking for sure! Anyway the Xanax is doing the trick and other than tired life is doable again, yea!

    Best wishes, Uneventful treatments, and calm(drug induced or otherwise) to all.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited February 2013
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    Yawls, I have to agree that mental attitude is a big part of coping. I've been counting down the treatments (19/32 today) so I'm now thinking even if things go bad it's not so long till the end. Now having mentally prepared myself for the end date I wouldn't like any delay!! I have occasionally thought about the machine breaking down so I really feel for you on that one.



    A work friend who is concerned for me keeps telling me I look tired. Not all that helpful when there is nothing I can do about. I actually feel OK but I have to admit I'm a little dark under the eyes.



    It seems we'll finish around the same time so please keep me informed about how you are going.

  • Yawls
    Yawls Member Posts: 16
    edited February 2013
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    Hi all, got the lidocaine today...break down on the bra line. My oh so sweet RO said, "you know, the gals with big breasts often have this breakdown where the skin lies directly on top of other skin". What he was really saying was when your boobs don't sit up all small and perky, they tend to flop over. When you are getting the beam, it goes through both layers of skin, thus almost like a double dose. Today was 23/34. One more week before the boosts begin. My team keeps telling me I'm doing great, I love them, so I'm going to believe them!



    Tammy, I gotta admit to you, I am not above when someone says boy, you look tired, putting on an even more pitiful tired look, agreeing, then hiding out in my office!! Sometimes I just feel like a little hiding out pity party is just the perfect answer to what ails me!



    Hang in there ladies, going to bed!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Hi Yawls

    I'm confused. I thought it was great to have c/ds so there was enough breast for a lump job. I know I have a dimple on top so yes the left sags a bit more, but when given rads laying flat there wouldn't be to much overage.... Not sure what you mean by double dose. Got to find supportive bra how do you give up underwire girls best friend.

    As for the you look tired how rude. Was it meant to be sympathetic? Yes your tired and your body mind spirit are stressed to the limits - high alert warrior mode since your first mammo call back. Have your pity part because soon you will be doing your victory happy dance- rads complete.

    You rock girl! And you too TammyM43! Lead the way

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited February 2013
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    Yes, giving up underwire has been one of the hardest things! In almost 3 months I've only worn a pretty underwire bra once. It actually worked really well as I'm rather lopsided now and it was good to have the support on my droopy non surgery side to even things up. Good luck finding a supportive bra and let us know if you do.

  • terrikoala
    terrikoala Member Posts: 5
    edited February 2013
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    RMlulu,

    I am a 40 DDD and not a heavy person...its all genetics with me.  Surgeon took  a good sized chunk for a small tumor to get really wide margins since he had all that tissue to work with (his words). I didn't think I had any swelling after surgery as I didn't see any difference in size and only slight dent BUT a few weeks after my 16 double dose Rads I must have had swelling because now I can see more of a dent and the left cup of my bra puckers a bit on the cleavage side and the boob doesn't peek out a bit like the right one does.  No droopier than it was before...GRAVITY my dear! Its all good.... I kept the breast, the cancer is GONE and the prognosis is good.  Had bad burn but not underneath but I do have some  dark rough patches under that boob that were not there before and will have Derm Doc check next time I go. I am back in my industrial strength underwire bras and they are not bothering me. I discovered Cacique bras from Lane Bryant before the surgery because they have such pretty ones for larger busts and softer wider underwires that I don't feel at all. 

    If you have too much 'missing' in a  bra cup there are many sizes of 'fillers' out there.

    Good luck with everything

  • Yawls
    Yawls Member Posts: 16
    edited February 2013
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    For Surgery, having big girls give you some good options. Even if your tumor is a little more spread out, you still have enough tissue to do the lumpectomy and still not be too lopsided. For me, I had mucinous type Idc. Which means that my tumor is encapsulated within a jell like pool. The actual tumor was smaller but for my surgeon to remove it and get clear margins she had to do what she called a quadrectomy. My tumor was deep near my chest wall at about 5:00. She cut out the tissue from 4:00-6:00. If I were smaller, the surgeon said I probably wouldn't have been able to have the breast conserving surgery, I would have had to go for the mastectomy. In fact our deal was, no clean margins on the first try and we were going in for the double mastectomy. I was convinced that having this D on one side only would just keep me spinning in circles all the time. Lucky for me clear margins, clean nodes and an oncotype of 8 sent me right to rads.



    So I got done with the surgery looked down at myself and thought, hey this doesn't look that bad. From the front I pretty much look the same except the nipple is looking off to the left a little! From the side I look like I leaned on a heater and melted, just sort of flat.



    What that means for radiation is that when I lay on my back, the breast skin squishes down on the skin of my under arm. So now when they aim the beem it has to go through the two layers its only about a quarter of an inch, but the RO told me that that little bit usually gives large breasted women their biggest challenge. Today was number 24, 5 more days, then 6 days of boosts. RO says boost is just going to incision site.



    I'm still wearing a bra. I'm wearing the nice cotton cacique's from lane Bryant like Terry. It's soft and goes up high on the sides to hold everything up, but its low enough in front that I can still wear a scoop neck sweater set. Today I put a soft cotton pad between breast and bra because the lidocaine is gooey. But I was not to uncomfortable at work so...so far so good.



    Thanks to all for the encouragement, I check in as soon as I get done with treatment each day, makes me feel more "normal" to know others are where I am!

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited February 2013
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    Yawls, like you I'm on the countdown now. 11 more days.... 4 full breast then 7 boost..... Yay!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2013
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    Yeah, Yawls & Tammy43 you rads soon done! I'm happy dancing for you!

    Went to see RO Friday, she wants another MRI. I was crushed - team said the 1st MRI was overread but there were 2 tumors in path report post lump. BS said rads would finish anything else.

    So we flew home for a break to play & revive. I told my DH no c talk until we return. MRI 2/28 then wait for consult 3/5 to find out another biopsy or rads. What a roller coaster. So I'm playing in the hill country of TX.

  • Elizabeth1889
    Elizabeth1889 Member Posts: 509
    edited February 2013
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    RMlulu, Wishing you the best of luck and sending hugs your way.

  • Destina
    Destina Member Posts: 51
    edited February 2013
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    RMlulu,

    I'm also scheduled for an MRI prior to starting rads. Mine is on 2/19 (my birthday, no less...hoping for a clean MRI for my gift) with a RO follow up on 2/21.