A rad onc weighs in on radiation "burns"
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Hi everyone,
I've been reading this thread with interest, as I'll be starting radiation in a week or so.
Here's my little twist on this subject:
I live in Germany and everyone I've talked to (docs, nurses, former patients, German bc forums etc) adamantly insist that NO creams etc be used during the entire rad process AND NO showers are permitted the whole time either. WHAAAAT?? The only thing allowed to touch the breast or underarm is talcum powder or cornstarch.
Meanwhile, all of you in the States are merrily slathering on all kinds of things (I copied down over 25 recommendations from this site before giving up haha!) and showering with apparently no greater side effects than my German bc sisters are experiencing. My gyno (an American who went to med school over here) says she's seen some "pretty bad rad burns" in women who had washed their boobs. Forgive me for being skeptical, or at least wanting to be convinced...
OK, understood, all the gels, lotions, salves etc have to come off entirely before the daily zap. And the RO quoted above tells us that most of these are for soothing purposes only.
Can anyone explain this?? I've looked for studies comparing the outcomes of the two approaches, to no avail.
Asking the German RO about it is something I'm hesitant to do, because here docs are considered earthly deities and questioning treatments is heresy. I could maybe get away with it because of my American accent hah!
I might post this over on the "Triple Negative UK" thread too.
Thanks for any help!!!
Cynthie
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Cynthie, I was told to use baby soap only and stand with my back to the shower so the water only drips over my shoulder and doesn't hit the area being radiated. I was also told that hygiene is extremely important, so I don't know what they expect you to do. Maybe they want you to take baths only? Maybe the waiting room at the rads facility stinks?
I was also told not to use anything if I didn't have a reaction. I told my RO that I was planning to use pure aloe vera but would make sure it would be washed off before tx. He reluctantly agreed but I think that was because I told him I was going to do it, I didn't ask his permission. If you want to use something and get stonewalling, you'll decide for yourself if you want to use something anyway.
If you do get a reaction and they still insist that you do nothing, I'll tell you the truth, in that situation I would use something anyway. Some people get very bad burns (even if you want to argue semantics and not call them "burns) and leaving them alone risks infection, especially if the skin opens.
I had a rash called "radiation dermatitis" towards the end of my tx. The itching was driviing me mad. The facility gave me a cream for it that did nothing. I took a suggestion from this board and used a 1% cortisone cream and it was gone in a few days.
My own experience: As I said, I used aloe vera. After about 5 tx I saw that I had what looked like a sunburn on the side of my neck. I asked the tech how high up my neck the rads went, and sure enough, it was the height of the "sunburn" (I hadn't used anything on my neck because I didn't know the rads went so high). I started using the aloe vera on my neck and the burn cleared up within a few days even though I was still in tx. So I'm big on recommending natural aloe vera.
A lot of the docs here have the same Dr. Deity attitude that you're facing. I just keep asking questions until I get an answer. Like you, I probably get away with it because of the American accent.
Best of luck with your tx.
Leah
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Cynthie - I am very interested in the German approach to radiation. I recall one woman on this bco site saying she was in a trial of using no creams or lotions during radiation. I start radiation in 3 weeks time and I am just starting to research what to do. My cancer agency said to use non alcohol cream and no oil whatsoever. I am not planning on showering at all during radiation - just a bath from the waist down. I would consider not using anything at all - do let us know how your radiation treatments go and if you use creams or not.
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I shower with my back to the spray. I wash with my soapy hand only on the radiated areas and I use a mild, fragrance-free soap. I shave my underarms with a blade instead of an electric razor. I use a crystal deoderant. I use cheap aloe lotion that's alcohol-free and fragrance-free. I'm not compulsive about lotioning because my skin has reacted well so far (22/33). I use an underwire bra because it's old and stretched out and more comfortable than the all-cotton seamless bra I bought. As I can see the finish line I am coming to the conclusion that a lot of recommendations are probably based on worse-case scenarios. I am most definitely not a worse-case situation.
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Laurascott--
Just a precautionary thought on the idea of swimming/hot tub--you don't want to dry out your skin and the chlorine will do that!! Plus the advice is to take warm showers only. I'm about to finish my 34 treatments and I had to take a 10 days off to let my skin recoup--it was extremely raw and oozing.
In the early weeks you slather a rich cream often (I used "udder cream"). Then, the very first minute you get a tiny blister, go to the nurses and ask for a script for silvadene cream--it's for bad burns, and it works and is very soothing. I cleansed my skin twice a day and lathered it on!!
Good luck to you!!
PS--remember to eat lots of protein (helps rebuild tissue) and drink lots of water.
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Interesting about the differing recommendations in Germany.
For what it's worth, I showered every day right before treatment, using Dove for sensitive skin. First thing in the morning, immediately after treatment and at bedtime I slathered on some 98% Aloe (the brand name was Jason I believe). I had zero skin problems through regular treatment, and only turned a little pink during the boosts - certainly no burning or discomfort.
The RO nurses had said aloe OR Aveeno or similar lotions, but told me by the end of my treatment they may be pushing the aloe harder as I am one of the few who only used aloe and at the same time had one of the best experiences. Personally I think I just got lucky, but I guess it won't hurt for others to try it too.
The RO did say that the damage will or will not happen regardless of what you put on the skin and that the lotions etc are just to soothe it. They did say not to run hot water on the treatment area while in the shower, but not to not shower at all! They also allowed non-aluminum deodorants such as Tom's of Maine.
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Thanks Leah, adagio, Carolyn, windchimes and Annette! I have my first radiation appointment this Monday at a hospital near our apartment. They'll do the measuring, mapping, marking that day, do you expect? My German surgery roommate has never heard of having little tattoos, which is probably one reason for the cream / showering aversion. She had to keep reinking her marks anyway, in spite of remaining "powder dry".
I do plan to have some aloe on hand. Someone on this site mentioned "Praevoskin" and said it worked wonders---it's available only in Germany, ironically. Think I'll stroll down to my local Apotheke and ask about it... German forums also mention "Leviaderm" as being approved in some situations.
Leah, your remark about the "sunburn" on your throat makes me wonder: Why don't they use some sort of cover or protection over nontargeted areas? With dental x-rays, you get a big lead apron!
Annette and Carolyn, I hope I'm as lucky as you were!
Well, we'll see what they say Monday! Aaaggh!
Cynthie
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Cynthia, the area on the side of my neck was in the rads field (some of the supraclavicular nodes are there). It wasn't an area needing protection, it was an area getting rads!
Though I do wonder why no shield is used over the thyroid.
Leah
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Cynthie, very interesting about not showering...I live in Australia and during my treatment we had quite a few 40+ degree days so I did shower at least once every day, some days twice. I have worked with wound care products and personally believe that showering the irradiated area reduces the bacterial load on the skin and should help prevent infections later in treatment.
My skin went really well through the treatment and I showered at least daily and moisturised 3x per day. I did shower with just warm water and patted the skin dry very gently.
This is definitely an area that needs some research!0 -
I am in spain and they also say no cream til course of rads has finished - i put some aloe on one tiñy spot as a trial and i burned! Showers where allowed but only with ph neutral soap and no deodorant
I used seven cream afterwards and my skin is fine now 5 months on0 -
Hi ladies
I've been following this thread & appreciate the sharing. My fingers were crossed waiting to see if would need another biopsy&surgery, but the RO said Tuesday I'm good to go! My rad setup is tomorrow. I've begun to slather aloe on my skin - very dry. I was told lukewarm showers no deodorant soft cotton ts lots of water. Just happy to be moving forward in tx
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Cynthie we will be rads buds across the seas! Good Luck to you.
Cindy0 -
Cindy - we have a Horseshoe Bay here in Vancouver, British Columbia.
Thanks for all the feedback - I think I will head out for a few soft cotton tank tops. I don't plan on wearing a bra at all during radiation (small breasts) so no hassle in terms of needed support. One website that I googled gave a few suggestions from ROs - one suggested filling a thin sock with cornstarch (and tying the top) and putting it in your armpit during sleep and another one under the breast - the idea is to avoid skin on skin contact during the radiation - she believed that the skin on skin was in and of itself an irritation to the radiated tissues. Has anyone else read about this - it sort of makes sense to me.
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Hey ladies - read this but very rarely respond. One lady from our old group last year used very soft pieces of flannel under her rad breast to minimize that skin to skin contact. She did very well. I did sometimes use DH's hankies he never used. Just threw them in a lingerie wash bag with bras. I used Aquaphor, prescription cream (can't remember the name, made for radiation burns) and after tx used baby calendula cream from Target. I did get a bit of a nip burn and used Domeboro soaks on it for a couple of days during the evening per RO.
I have 3 tats but also had sharpie markings with sticky tabs for the weekly realignments.
I bought cheap cami's and sports bras from Walmart. Even the Aquaphor washed out well.
Hope these suggestions help some. Best of luck to all you ladies (and any guys that happen to be reading but not posting).
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Best wishes to everyone starting treatment.....
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Cindy, have you started your rads yet? Thinking of you
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Hi y'all
Today's the big day...11:15! Ready for some serious laser tag...one lady said she fell asleep from using her relaxation mediation ....hum.
Asked about earthquakes they all laughed...just wanted to know how fast they could turn off...now to sedate my allergies...moving on! Thx))0 -
I went up to the hospital yesterday, expecting to start on the simulation. No, just a chat with the RO. She took a lot of time explaining how it all works, what will be radiated, skin care etc. As suspected, no washing, no creams, just powder. I asked her why the difference between this skin care protocol and how it's done in other countries, and if she had studies comparing the outcomes. "Oh ja, es gibt Studien..." but she didn't sound too convincing, I must say. She admitted that "this is an old-fashioned approach, but we are confident with our results". We shall see, but it makes me nervous when the "standard of care" is so different.
I suspect it's really because they don't want their markings to be washed off---if you use creams, you have to wash them off before the next session. I asked her if they use tattoos and she said they used to, but not anymore.
Another question: How long is the actual zap? Three minutes?? That seems reaaaally long, but that's what she said and I asked her to repeat it just to be sure.
The first actual rads session is next Thursday---six weeks since surgery. Another six weeks and it will be all over but the mopping up
. No chemo, no pills---must count my blessings!!Hugs! Cynthie
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Hi Cythnie
Are you in Germany es gibt Studien? At the Lucy Curci Cancer Center CA Rancho Mirage my RO had tiny freckle tats placed on my body to help position. They drew a box around the area to be treated but said not to worry it would wash off and placed to stickers that will come off too but last a bit longer. First rad was today lasted 1 min one direction break as machine changes to the other angle then 1 minute....this was so much easier than what my head had thought. Now I'm not one to hold still but I did deep breathing before hand and was very relax.
Very doable:))
I was I instructed to apply lotion after treatment and again at bedtime.
Do you have options to get a second opinion. It is imperative to be confident with your care!
Best Wishes
Cindy0 -
Cindy - that is about the length of my zaps, too. I got to where I would count so I would know when it was switching angles. This link was great when I found it. My RO was not the best at explaining this but this did the trick.
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Thanks luvmygoats I will check it out....so glad it is so fast. Lasers do your job kill the enemy!
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Thanks Cindy and Luv! That radiation treatment link had just the info I needed. You've heard of gals with left breast rads holding their breath during the zap to avoid it hitting the heart---that's why I was shocked when the RO said it would last three minutes. OK, not one continuous three-minute beam---phew!
Cindy, I do live in Germany. They have a well-run health care system here and in general I think my care has been on a par with the US. There are differences though, some good (after a lumpectomy you stay in the hospital until the drains come out), some weird (like this rads skin care thing). We are considered private patients, so we have access to the top docs and other perks.
This hospital was recommended for radiation treatment by my first radiologist (who spotted the "Icky Yucky Pea" on that fateful mammogram, tausend Dank Dr. Frank!) and it's a 15-minute walk from our apartment.
Hugs! Cynthie
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Cynthie, did you ask your rad onc about how you deal with hygiene if you're not allowed to shower? Does she mean sitting in baths (up to your waist I would think) or does she really think you won't shower or bathe for 5-6 weeks? One of the reasons I'm asking is that keeping the area clean was emphasized quite a bit. If you have skin problems and the area is not even cleaned then infection would be a serious worry.
Best of luck with your treatments.
Leah
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Leah, it was a bit confusing! The printed literature I was given said I could wash the area, but a handout they included said NO washing---the RO said I could bathe and even wash the underarm
but not the Bad Girl, although "a few drops of water won't matter". You raise an important point about keeping any possible skin lesions clean---they'll have to clarify how they deal with that. Or maybe POWDER keeps them from developing!!I am going to take your advice from an earlier post---at the first hint of burning, rash etc on go the aloe vera and/or hydrocortisone. I found a study (from AUSTRIA haha!) which said that 1% hc led to far fewer incidents of radiation dermititis and other problems (sorry the font's so big!)
Topical corticosteroid therapy for acute radiation dermatitis: a prospective, randomized, double-blind study.
http://www.researchgate.net/publication/11302861_Topical_corticosteroid_therapy_for_acute_radiation_dermatitis_a_prospective_randomized_double-blind_study?ev=sim_pubI have a bunch more of these!
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Hi Cynthie - sounds like you have great care. I have family in Bremen & Frankfurt
My RO said I may shower wash the area and tech reminds me daily to treat area with aloe after tx and at bedtime...I shower before I go in the morning to ensure area is clean dry and ready to go. My markings are checked each time and they are permanent ink & tats.
I'm 2/30 feel like I making progress in this battle.
Best wishes during your tx!0 -
Outfield, I enjoyed reading your explanation. I think you said it very well, based on only what I have learned through web research and my rad onc. What is your field? Are you in the medical field?
It is interesting to understand about the healing process. I knew about antioxidants getting in the way of rad therapy but since many of those things are left afterwards, it follows that we should get back to those vitamin supplements soon after.
Dancetrancer, I will look up those guidelines too. My tumor was 3 cm but some margins were 0.02 mm. So why radiate the entire chest wall behind the mastectomy site, when margins were only small in one small area near the skin? Other margins were 2 cm or greater. Some facilities just love to use those machines. There's a lot of money in it for them.0 -
Hello out there.... How is everyone progressing with treatments? Take care....
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Hello All, today is 16 of 33. So far so good. Only a little itchy right at one of my original biopsy sites. The "bad" biopsy site is under my lumpectomy scar. I purchased emceeing aquaphor, but haven't used it. It is thick and greasy. I was every morning in the shower with oil of Olay bar soap. I bought a sponge to use in case the area gets sensitive, just to squeeze soapy water from. Again though, so far so good! I have used Aveeno lotion after I get home from my office, when I change my clothes for the evening. I don't put anything on after my shower each morning. I am using Toms natural deodorant and shave with a disposable razor. Keep us posted, everyone. Hopefully, no news is good news!
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Cynthie,
Dove and Caress are the two nicest soaps to use and no residue like Ivory tends to do sometimes. So gentle and soothing. Don't use wash cloth;.put soap on your hand and gently apply. Of course shower as often as you wish but don't let it hit boob directly and pat dry. The idea is not to irritate but cleanliness is very important during healing.
As for creams...I have never heard of any of them doing any harm. Its trial and error as to what works best for you.
Bless you on your journey,
Terri0 -
Good morning. I will have #13/33 today. Kind of ticked that the doc & techs didn't tell me to take care of skin on my back too. I noticed a few days ago a large rectangle of reddish brownish skin back there. Just glad I noticed before it got bad.
Everywhere else looking great so far. I use vitamin e cream 3-4X a day plus aloe vera gel right after treatment.
Does anyone else have pain around the implant port? It is feeling just like it did right after surgery. I hope it doesn't get worse.
Take care! We can do this!0 -
Good Morning and Happy Monday!
Laurascott1016 - congrats 16/33 on being half way done:)). Thanks for the info on creams and soaps. Have not shaved my left arm put for weeks ... European on left lol!
MsW2012 - yeah 13/33 you are moving ahead of me! Good to know about the back...will have to start lubing that area too.
Terrikola - yippee you are done and great encouragement for those of us in tx. Will put my wash cloth away and just caress...did you massage your incisions mine seem to be getting tight and hard with all this light.
Cynthie - how are you doing...and where are you on your tx regime. Nurse at rads said 1% hydrocortisone and then aloe at first sign of itching...
Well time to get ready for daily trip to rads:)). Have a great week and may our skin fare well as we move forwars in this crazy laser tag...lol kicking c!
Cindy0
