A rad onc weighs in on radiation "burns"
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i agree with spinnerpom, that cancer research is a big money business, but we need to pray that are daughters dont have to deal with this as we have, i too had and have fatigue, and i am a 21 yr Survivor this yr, (Praise GOD), with all the tech and so on, i often wonder why this disease has not been eradicated by now and the answer is Big money ibelieve, i will continuse to pray that are next generation will not have to deal with this. msphil(idc, stage 2. 0/3 nodes, L mast, cheme and rads and 5 yrs tamoxien)
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msphil here, and i forgot to say i still have radiation burn all these yrs later, but thank GOD for life.
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From the threads I have read over the last few days here and elsewhere, different people who've had radiation therapy used different products....and a few that several sisters here swear by were（a) 100% Emu Oil and （b) Burt's Bee Mama Bee Baby Oil and have ordered these already as well as 100% Aloe Vera Lotion. Ｉｆ ｔｈｅｒｅ ｉｓ ａｎｙｏｎｅ ｗｈｏ ｉｓ ａ ＲＯ ｏｕｔ ｔｈｅｒｅ， ｃａｎ ｙｏｕ ａｄｖｉｓｅ ａｆｔｅｒ ｔｈｅ ｒａｄｉａｔｉｏｎ ｂｕｒｎ ｏｎ ｔｈａｔ ｔａｒｇｅｔｔｅｄ ａｒｅａ， ｉｓ ｉｔ ｇｏｏｄ ｔｏ ａｐｐｌｙ ａｎｙｔｈｉｎｇ ｔｈａｔ＇ｓ ｏｉｌ ｉｎ ｎａｔｕｒｅ？ Ｔｈａｎｋ ｙｏｕ．
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I finished 35 round and 5 boosters. The thing that worked best for me was cortisone cream 2% prescribed by the MD.
Good luck sugar
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If I were able, I would post pictures of the damage radiation has inflicted on me. I finished my course less than 2 yweeks ago. I don't want to discourage anyone from their salvation. I'm sure that mine was a very aggressive approach. I don't like anyone telling me that we don't burn.
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Oh, you mean "pinkness, as though you have a sunburn" as it was described to me by one RO?
I wish these people could at least be honest -and maybe even apologetic - about the damage they inflict and that they don't have better tools to a) predict who will have problems and b) minimize damage to healthy tissue. It's really as though they don't care.
I'm sorry you had such a rough time of it, lunalin, and hope it heals well now that you're done.
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I had what they call skin breakdown. I lost ALL of my skin. I had a mastectomy 10 yrs earlier. They applied a bolus and let me cook, lol. I did not have a little boo,boo. It was an area of 8 x 10. It is still raw and painful. I don't blame my drs. I am just angry about that report by that alleged radiologist.
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I do blame my rad onc - there doesn't seem to be any reason at least to me to burn me or anyone else until we are black and blistered and bleeding and that's what they did to me and 7 years later the skin has finally healed but still itches and is red every night - it still takes me forever to get my daily shower because of the PTSD from that time - a close friend of mine warned me but we both thought that hers was a rare occurrence - seems like it isn't and it seems like no one gave a damned about it either - only my MO's nurse who "held my paw" through the worst of it - sorry if it upsets anyone but I come here to vent and to let others vent as well.
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It distresses to me to no end that some of you have suffered so horribly with rads.
Why? I dont understand how one patient has an easy time of it (like me) and others are tortured.
Do these MD's read the same books, is the equipment the same, is it our personal physiology, is it neglect? Really ought to be some answers.
I am so very sorry that some of you have suffered so.
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My RO did something for me that I believe helped me avoid some of the worse SEs, and hopefully had no affect on my overall outcome. When my arm pit was getting very dark red and angry looking, he switched to boosts (which I was also scheduled to receive). I had 23 of 28 regular treatments, ending on a Monday. That Tuesday through Friday, and the following Monday, I had boosts. After that, we went back to my last regular rads, which finished yesterday. Today and tomorrow I'll get my final two boosts. The week break of boosts-only gave the other skin a chance to settle down and heal, and I feel fine now. But I don't think that would have been the case had they kept going, and particularly if they'd kept going and done boluses on alternating days like they had been doing.
Do I worry that there was a week off between rads? A little bit, yes. But I'm trusting my RO and truly believe he wants the very best for me.
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I had a tough time with rads ... all 38 of them including the boosts. My skin burned and blistered (I'm a redhead, so fair skinned) and it was painful and itched a lot. I could not wear a bra for a month or two. My radiation oncologist was a nice guy ... personable and fun to be around .... but he pretty much discounted my complaints. I used Aquafor on my skin and it was the messiest stuff ever ... had to wear old shirts when applying it. I wish I had known about the Cortisone cream.I know that treatment can be hard and we're all different but letting someone burn the way Lunalin did is unforgiveable. I met with my rad onc once a week during treatment and he examined me each time. Surely they can see if a person is getting burned really bad.
That was almost eight years ago and my skin has healed and looks fine. You can't tell it was burned now, but it still hurts to touch. Mammograms and breast exams are very painful. WTF ... everything about cancer sucks.
hugs
Bren
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Hi Ladies, I had 28 rads and 5 boosts, and my skin held up pretty well for the most part. It did peel, turn dark, and freckle. I am still seeing peeling mostly now the boost area over the scar. I am distressed about the scar, it looks larger and puckered. It will turn red when I shower or rub Aloe on it. My armpit is still a bit tight, but I am working on that. The big deal was the look of it. My Dad was burned when I was 9 years old, and the visual of a burn makes me nauseous. Weird reaction but anything that looks like a burn makes me ill and weak in the knees.
My other big complaint, is the struggle to keep the pads on to keep it covered. I had the stretchy tube wrap and all it did was roll up. So I got out some ribbon and made festive shoulder straps to look like a cami top. That worked wonders, and kept it all in place, and comfortable!! No tape, and I could safety pin the pads to the fishnet. I could also wear my soft form just by pinning it to the fishnet. So a huge win for my recovery. I hope this may help someone struggling to stay covered and heal.
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I was thinking. Does the equipment have anything to do with it.
The RAD MD spent 2 days preparing the mold I would lie in, and preparing the settings. He jokes with me that unlike a microwave that has a popcorn setting etc, the radiation equipment does not have a bc setting. It actually is personalized to me.
Also, this cancer center is about 2 years old. How old was the equipment that so harmed Sandy208 and Lulalin.?
I know we are trying to understand the unexplainable, but there ought to be a reason why some do well and others dont.
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Hi,
I used mainly calendula and I think it was great. This article cites studies of different products and their effectiveness:
http://ons.metapress.com/content/b076877857126648/fulltext.pdf
I used aquafor at night to keep it moist but washed it off in morning.
MX generally suffer more than LX it seems. My RO wanted an "angry burn" and it took until about day 23 to get there including the bolus. I was pretty annoyed and fought her on the bolus (they don't use it in Europe as much but RO wanted it because she said it helps keep burn at top of skin where cancer cells hang out). She finally took away the bolus for the last two sessions once she got the burn she wanted. It was really ugly the week after but eventually healed and now you can't tell the difference by look- sometimes part feels a little tingly even still.
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I suspect that there's simply not been enough research done to be able to accurately predict a person's response to radiation. And I think much of that is due to the fact that the ROs are so busy downplaying the SEs that they have come to believe those SEs are minimal and therefor not worth the effort to avoid.
(They're also very dismissive of the psychological effects of permanent changes to the body, such as hardening of the breast, random pains that persist for years, even the negative connotations of the tattoos. I think most of them have a pretty severe case of tunnel vision.)
I have read, very recently, that statin drugs tend to sensitize to radiation; that may be part of it but it clearly cannot account for all of the differences in response.
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Yes , I am one who had horrendous burns from the rads - I was treated in South Carolina and my best friend was treated in Toronto - both at state of the art facilities and we both had burns that were black and bleeding - bff's finally cleared after a couple of years - she didn't finish her treatment - her onc thought "enough was enough" when he saw the extent of the burns - my onc (a woman - go figure) saw my burns and kept on trucking and mine have only just recently healed after 7 years - we both have very fair skin and are blue eyed - sadly my cancer came back, and thank god, bff's did not - it would take a team of horses and a ton of pills to get me back to rads!!!
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I wonder if the decision to continue treatment regardless of the burns has anything to do that a full course of 35 rads is $45,000. in my area,
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Rads were, by far, the hardest part of treatment for me. My RO was nice enough, but dismissive of my concerns that I was in pain, coughing, and burned. Yes, I am grateful for the technology and happy to be alive. But it was tough, lying on that hard table day after day, my mutilated chest exposed, listening to the x-ray machine sing that long, long beeeeeeeeep.
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Hi Raider Girl, I just got a bill for $43,113.84. And that is not all of it. Rads are $1,221 each day, I haven't got the bill for the boosts yet. And that does not include the RO visits etc. Don't have it to pay, don't care. No not depressed...................lol. I'm Stage IV, I will keep the balance running until.....yep you get it, and they won't. I have passed the point of being worth more dead than alive. Still don't care. Hating this.
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I have no ill feelings toward my RO. I was warned that I would probably burn. My radiation was not following a lumpectomy. It was my third surgery and one without clear margins. It was a last ditch effort. Additional chemo was not an option. I also had a 2 week break in treatment, due to my burns. Sometimes you just do what must be done.0 -
Fabulous explanation! It makes perfect sense.
I have very sensitive fair pink skin being a strawberry blonde with blue eyes. I had bilateral rads for the bilateral lumpectomies.I used Biofine by Neutragena given to me at the rad clinic. I slathered that on all day with non stick pads for cooling comfort, with a band aid comfort feeling. I got through the 7 weeks with sunburned pink, then fiery red skin mostly at the boosts, no blisters, some itching. I showered and removed the cream each morning. I couldn't wait to put it on. It felt so much better each time the heat built up...4 times a day.
I kept small 2"square hand made flannel pillows filled with flax seed in the feeezer and replaced those all day long to cool my sides and help keep my sport bra from touching my skin.
Find your way to be comfortable!!! No need to suffer. Ask for pain meds if you are hurting.
Continue to stretch daily to keep your range of motion. I wish I had done more of that but know one suggested it until saw a PT nine months later all jammed up and sore from lack of mobility. Swimming was the answer!!!
I got my energy back 3mos after rads. Skin fully recovered in 3mos too. However I needed the swim and stretch for nerve issues. Now virtually cleared up.
I am 5years out, still clear, best wishes to all
Kirsten from New Hampshire
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I have 8 more radiation treatments to go and than I am on to the next phase. Right now the only thing that is a little uncomfortable is the nipple area, but it is not overbearing. I have some redness starting under the armpit. I have continued to work through all the treatments, and there are some days that I am overly tired, but I just go to bed earlier. I am now worried about starting the tamoxifen, does anyone have any input on the pro and cons? I do smoke....(I know bad habit) my oncologist said that the percentage difference for people who did radiation and tamoxifen verses the people who did radiation alone, is not the much difference. He recommended we just try it for a month and see how it affects me.0 -
Lisa 9101
I am not on Tamoxifen . I am taking an aromasin inhibitor since I am menopausal. I cant speak of Tamox explicitly
If the MO told me there is not much difference in survival or recurrence, I would drop the aromasin instantly.
Its impossible for these meds not to have side effects. Its also unbelievable that there are no long term residual effects.
The percentages of benefits for me was great, so I take the med. But if it weren't so.....no way.
Good luck to you
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OMG - now I'm really freaked out. I don't know why I thought radiation was going to be no big deal. Possibly because my BS said, "just a little radiation." Probably 5x a week for 5 weeks. I just had lumpectomy and sentinel node removed a week ago and haven't met with RO yet. I do know it's Stage 1 (but not whether a or b) and the tumor was 1.7 cm, so it's nothing compared with what so many of you endure, but I'm very glad I've read this thread.
Does the equipment make a difference? Is there a certain type that works better than others? What does "state-of-the-art" mean? I am travelling almost 200 miles to Sloan Kettering for physicians, but there's radiation treatment available at a local center and now I'm terrified to go there, although I don't know if it would be different at MSK. I have very fair skin and freckle easily. I meet with BS and get referral to RO and MO next week, but am trying to get prepared for that visit.
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Hi Ann13820,
I understand your freak out. I had gobs of questions for my RO being a pink fair skinned freckled strawberry blonde. Just the idea of rads seemed ludicrous since I burn so easily in the sun.
I had conformal radiation. The beams came from different angles to target the breast tissue as close as possible. I insisted to see the texhnical data of how much lung and heart were going to be touched since I had rads on both sides each visit for my bilateral for 7 weeks ( 5 days/week with boosts at end) I had a neg sentinel node so I did not do axillary rads.
My fair skin survived really well-got hot, tender really dark pink, a little itchy, but the cream really soothed the heat and helped my comfort. I ask and got pain meds throughout the treatment-really helped- a non opiate pain reliever. (See earlier post-detail on personal care during rads)
Good luck as you heal from surgery and move forward. Reach out to others who have used your clinic nearby.
I also went to a nearby clinic rather than the 2hr trip to Dartmouth Hitchcock Norris Cotton Cancer center.
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ann13, we are sorry to hear what you are going through, and that the treatment is worse than anticipated.
It may be helpful to read about side effects of treatment ( Managing Skin Side Effects and Managing Other Side Effects of Radiation), and we also agree with the suggestions from KBP to talk with others who have undergone treatment at your center. We are anxious to hear how things progress.
Warmly,
The Mods
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Thanks Moderators & KPB for your kind words and advice. My brain is a little foggy. I didn't even think to reach out to people who've had treatment locally, but I will definitely do that. And to know to ask for technical radiation data -- I wouldn't have thought about that. So glad I found this Discussion Board.
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You may have some wisdom for me. I'm weighing a decision of my fourth lump ectomy And radiation for DCIS. I have a posterior close margin .5 mm with greater than 10 mm on the other sides.
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Dear GoodConstitution,
I am sorry you are facing another decision. I have found the decision making process to be very anxiety provoking. The feeling of being at a crossroads which will determine my fate.
What do I do? How do I make a decision? I am learning to trust myself. To stop trying to control cancer. I ask myself, "How far will I go with treatment, before I cross the line of expecting a perfect outcome-a cure?" The word "quality of life" and peace with myself comes to mind.
I have been surprised at what I can tolerate, bilateral lumpectomy, rads on both sides, years of PT...but I have to constantly remind myself no matter what I do I cannot guide and determine my fate.
Radiation is a serious decision and has its place in cancer treatment in this era. However no treatment is a guarantee or cure.
I believe the doctors and medical research are doing their best to give us statistics to help us with these decisions. The false sense of security is relying completely on these stats. Either my cancer will come back or it wont.
Going around again for the fourth time, if you can handle another lumpectomy, do it. Can you consult with your medical team, ask questions, "Are there any other oncotype tests or gene studies to learn more about my DCIS, for me to weigh my decisions?" Trust yourself.
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Hopeful, I am with you on what you said about ROs. They act like side effects are nothing, and they dismiss daily concerns. Genetics must play a part in response to treatment but also state of technology at the facility, including Dr. familiarity. I had MX with 28 days x-radiation with bolus, no real problems. I was faithful with care regimen of aloe gel, aquaphor and 20,000 vitamin e cream. I did get skin breakdown a few days after the last of five boosts of electron radiation, also with bolus. Nobody ever said anything about wanting to see a burn! And I didn't understand the extent of the toughened tissue. Chest wall radiation left me with that all around the upper front rib cage and especially a big ridge all around the mx site.
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