intense burning from 2 radiation treatments

I started radiation on Monday.  I was not afraid of this part of the treatment plan.  We have a nice radiation facility in my city.  However, I am quite dismayed at the level of burning I have had with just 2 treatments.  I had a lumpectomy and sentinel node biopsy on 9/17/08.  I am of Northern European decent but tan fairly easily.  I was a life guard in college and worn pretty skimpy bikinis but this part of my body has never been exposed to any sun.  The radiation oncologist had talked about the skin looking like you had a sun burn as you got further in your treatment.  I thought, "I can handle that."  The radiation treatment did not hurt at the time it was given, but about 4 hrs. later, my breast, especially the nipple started burning like the worst sun burn I've ever had.  The one I had yesterday was even worse.  It burned so bad that I could not even stand to have my clothing touching it.  Is this normal?  

I have Fibromyalgia and was up front with the doctor at the meeting to see if I was a candidate for lumpectomy ( a month ago).  I told him I was concerned about pain because I hadn't had Fibro that long and didn't always know what would cause me problems.  He said he'd never had anyone with Fibro have any problems.   I have no way of knowing if this is a Fibro response or if they are giving me too many Grays units for my skin type.  If it burns this much after just 2 treatments, I can't imagine how bad it will be at the end. I was so down last night that I talked to my husband about quitting radiation and having a mastectomy.  I have Tramadol for my Fibro, but had gotten to the point I hardly needed it any more, prior to surgery.  I don't like the thought of taking a ton of pain killers just to get through this.  

I'd love to hear from some of you who have had radiation and find out if this is what your experienced, and if so, what did they do to help you feel better.  Thank you, Kay

[japdip]

It's not really abnormal ... there are preparations that I'm sure the Oncologists office can recommend to help with the "burn". Everyone's skin reacts differently but there is always some degree of burning with radiation. In the meantime during your course of treatment you might consider buying a "Softee" camisole ... they are most often recommended following breast surgery and radiation. Medical supply stores have them or can order them ... a camisole that is VERY soft with all seams on the outside and made so that you can step into them rather than overhead. Better than going "bare".  Good Luck ...

[madgeOwens]

Geeze thats terrible. I remember someone who had lung cancer was made real red from radiation and we had thought they used to much, then later he died from the type cancer caused by radiation, and we will always wonder about that. I know if I am faced with that after reading some of these posts i would opt for mastectomy. God love you. I hope it does not get worse.  best of luck to you. God Bless, Madge

[rockchalk76]

Thank you for the clue on the "Softee" camisole!  I'm getting more information here than I did from any of the doctors and I felt like I asked a ton of questions.  There is so much information coming at you and so many decisions to make, it is hard to think of everything.  My husband goes to every appointment and takes notes but I am kind of disappointed in the care here post surgery.  It would have been nice if one of the nurses could have told me about these camisoles before the doctor came in.  All they did was ask what my pain level was and "Here's your gown."  Yesterday I saw a flyer about a support group just for breast cancer that meets at the hospital.  Again no mention of that.  I felt that I had so many important questions to ask in the limited time that you get with your doctor, it would have been nice if they office helped the patients a little more with this kind of information.  

Yesterday was better, only a slight burning sensation and was more what I had been told it would be like.  They spent so much time before the treatment, telling me I couldn't do this and that, I wish they would have said you can use this in case something happens latter in the day.  Toms of Maine is basically a joke as a deordorant by the way - that's the only thing they said I could use.  Thanks again for some ideas on what can help. - Kay

[rockchalk76]

Yesterday I asked the technicians if it was normal to have this burning.  They got all revved up and had me speak to the nurse.  She told me that this usually only happens in her "younger" patients.  At 54 I hardly feel younger but that's how she categorized me.  It happens about 5% of the time.  She said that it is the blood vessels dialating.  She said it is like having a hot flash or flushing.  I said that I have had hot flashes and none of them burned like this.  I asked if there was anything I could put on it and she said a cool, but not cold wash cloth.  I said that it was almost more like an allergic reaction, like what happens with a wasp sting - swelling, redness, heat, and burning pain.  She said that she didn't feel I had any infection and this would probably go away in a week.  I asked why they didn't tell me about it before hand.  Her answer was that it happens so rarely that I would have been "waiting for it to happen" if she said told me about it.  I felt like she was talking down to me.  I related that I am trained as a scientist and I do better with information before hand, rather than after the fact.  Then she switched the subject to her mantra that "I know you can get through this."  Yah, if I do it will because I gutted it out on my own, not because of any help they gave me.  I feel like they just have a cookie cutter system and if you don't "fit" like a good little patient and ask too many questions, you are viewed as difficult.  What about all the stuff I read in the breast cancer books about the new system in medicine of the patient being part of their health care "team"?  I don't think the team approach idea has reached this part of Iowa!  Oh to be back in Houston and I could go to my doctors that I actually trusted there.  

[lhughes]

I used a product called Vigilon on my radiation burns, but I didn't have the type burns/pain you are speaking of until week 3 or 4.  Call around to some medical supply places and ask if they carry or can order Vigilon for you.  It's a water based  bandaid ... but not really a bandaid ... it's gooey and a tad weird/gross to put on but works SO WELL.  You can cut it to meet the size of the area that is having problems and use a roll bandage to hold it in place (or I used my camisole... whatever).  It really helps to put moisture back into the skin.  The downside is it is expensive for a box.  Seriously helps though.

Also, there is a product you can order only from a CVS pharmacist called Oat Beta Glucan.  It's about 50.00 a tube, but is better than OTC lotions and creams.

Perhaps these products can help you. My rad onc doc was very adamant about using these products and I have to say they were worth the expense.

[kateful]

Thanks so much for checking back in.  This is excellent information and will be useful to me when my treatments start several weeks from now.  Thanks!