A rad onc weighs in on radiation "burns"

J_J_

Thanks for the reply! The rads actually not been all that difficult, just hard to get some information....Most pain just at night when things pull and stretch & I want to SLEEP!!! Also don't like someone else, especially a doctor who is supposed to be my ADVOCATE, telling me how little pain I am actually having. Implies it is all in my head, the rotter....

I am using tons of cream, just have really sensitive skin. I find Aloe, the real thing from the plant is very soothing, then cream on after, but need need to get up in the night and do it often this last week or so

  ...But you are still peeling after all this time?...ugh...Better than some other side effects though, I suppose...

Is there not a notification on this board, RMlulu? I looked in and saw your answer , but had no email it was here... J_J_

RMlulu

JJ - sleep ah! Everything is better with a good nights sleep.

I did show&ask every Mon&Fri during rads. I was terrified of a breakdown...whimp.

2.5% hydrocortisone and emu oil saved me both sides. I slept with girl exposed and pillows so that nothing would touch the tender skin.

My rad team rocked:). Skin was fine until a few weeks ago...think it's because I stopped free boobing and started wearing clothes full time. My hubby brought new neighbors in twice and caught me exposed so decided time to cover up ha! Makes a great 1st impression.

I think in profile you can set up notifications...

You are your best advocate!

(((Hugs)))

Cindy

luvmygoats

JJ - I just keep my favorites tab open and refresh periodically. But Cindy is right about notifications/email. It might come off the Dashboard function. The box in upper L corner has it. Have you tried Aquaphor from the drugstore? Greasy but I learned to love it. I worked thru rads so had to wear a bra. I used a sports bra because the looser things rubbed more. The Aquaphor washed out very well; I still use the bras on occasion, none the worse for all the grease. I think I slept in a cami under my nightgown. I know I wore them under my scrubs. I thankfully had a female RO who was very sympathetic. Loved her. I had a weekly meet up with her and she or another RO was always available for consult as was the nurse.

Cindy is right - the squeaky wheel gets the grease. Maybe the rads techs can advocate for you. Try on some phrases for size to use with your RO - like a practice run. I'm not so good at standing up for myself and find this helps tremendously. I've even written out talking points like a script - for myself of course. The more you say things the easier they get to say.

Sounds like you're almost done. Do know that your symptoms will continue and may get worse up to 2 weeks post rads - at least that's the time I was quoted. Just like it takes time to build up it takes just as much time to go away. Not sure if they told you this and much better to know than think well OK, rads are done why the heck am I hurting/itching/etc. more.

mummommama

Hello,

I'm a late comer to this thread but I'm really grateful to those of you who have contributed. I've learned a lot from reading your posts. I know my skin is sensitive (I'm a ginger) but even my medical team has been surprised with the tissue breakdown radiation has caused. I'm in a really good deal of pain. It effing hurts. I have 5 more treatments to go and each one brings new elaborate pain with the changes in tissue damage. I had no idea that these could linger after the last treatment! I thought I'd be home free after the last zap.



Thanks to this thread I will be diligent with my monitoring of my own healing and let my doctor know of what seem like delays or setbacks as soon as I notice them, rather than wait for them to go away.



Please post as you all heal and let us know what worked for you and what we should look for regarding the early signs of problems, and the trajectory of healing. I'm all alone out here and I really appreciate everything I learn from this community.



Cheers,

Mum

RMlulu

Mum - welcome this thread is so helpful, but oh my ouch:( so sorry that your skin is suffering & hurting ugh:(

Show and ask and know your rad team wants tx to go well...TGIF so 2 days off. The boosts were a bit easier...are you able to air out your breast...seriously free boobing helps...no clothing to rub and wear the new skin raw. Build an air tent around the girl at night so nothing can touch her. Ask tomorrow if there are any sample creams or RX to help the skin heal. Have a weekend game plan.

Hydrate hydrate hydrate eat extra protein and pamper yourself (yes you're a mum but get help or send the kids out) you are so close...hang in there it will get better...

Sending calm healing pain free thoughts and prayers. We are in your pocket your not alone.

(((Hugs)))

Cindy

Infobabe

That informed consent for rads could use a little work. If they told the truth, you wouldn't do it.

Shirlann

Well, doc, you could mention Costochondritis???  I got that and it scared me silly and I never spoke to my Rad Onc except once, before treatment.  I did not burn at all.  Just got toasty brown.  BUT I have gained and lost weight since the rad therapy, and the radiated breast, which looked just like the other one at first is now 1/4th the size?  My fault, to be sure.  You sound like a winner.

Hugs, Shirlann

J_J_

Shirlan, so sorry you had such a tough result...no the list is rather simplistic. They don't want to discourage you from using the treatment they've used for over a 100 years...now they speak of that as being proven, but perhaps this makes it quite simply....archaic. 

But am done now! well, with the rads anyway...Thanks all, for the cheers and cheer me uppers..
I was given mepalex dressings, then the padded ones and have not had the excrutiating pain since ( Get a large sheet and cut to size with sterilized scissors...Keep the pkg. on while cutting for the clear sheets )...totally recommend this for the nip, as that is where they tend to stick best, and where I needed it the most...Peeling there for the second time now, but not bleeding this time.  I think I started burning & having small blisters rather early. Aloe directly from the plant worked for me, but we are all so different it seems?

 I have sensitive skin and was not allergic to this product, but it doesn't stick to just any skin, especially the harder skin resulting from the rad treatment, so couldn't use tape elsewhere as I am allergic to several glues since my surgery...

Hugs back...J_J_

Note to mepalex should you read this!!!...please lower your prices, but not the quality on these dressings and I am sure you will get more customers. The expense detours people away...

mummommama

Thanks Cindy. Rads are officially done for a week and a half now. The skin is healing but I have such fatigue that the saline soaks are hard to do by myself. I'll just wait till hubby comes home.



So glad most of the pain is over.



How was everyone's fatigue after rads were done? How long did it last?

RMlulu

Mum - congrats on completing rads! Ooo who Happy Dance!



We are all so different...fatigue may come and go for sometime...hydrate eat well exercise and just be kind to yourself. I was told anywhere to 6 months, but found just taking good care of self...naps...felt better 6 weeks out:)



You've just been through a major battle...PTSD...lift your head high...you did good brave warrior! There will be tears of joy, relief, and wow what just happened! Surprising how once done it all seems to overwhelm! But you did it!



(((Hugs)))

Cindy

whytekat

Nice to know that they are not actually burns....just " missing skin" I have a great rad oncologist who has been treating breast cancer patients for many years....my initial consult with him was after my mastectomy in May....I had triple negative stage 3... Did chemo before surgery to shrink the tumor down to a manageable size. I did 7 weeks of rads.....and " burned" severely.....as my surgeon said...." You had an unusually adverse reaction and are way off the charts". it's now 7 1/2 weeks since my last rad.....and I still have areas of extremely painful " missing skin" . Twice daily cleaning and Silvadene cream applied to those open areas. It is getting better, but taking its own sweet time! Any suggestions??

RMlulu

Whytekat - my what a journey you've been on! Sounds like you have an excellent rad team, which is a comfort in itself. Oh this journey...sorry that you've had such an adverse reaction ugh. But time heals...do you see your RO weekly to monitor the rebuilding and healing?

No suggestions...wish I could wave a healing magic wand to bring complete healing!

Just stay the course...keep in contact with your team...knowing that it will be behind you soon...hydrate, eat well, exercise, rest, and laugh! Get your fierce warrior attitude on!

I still apply hydrocortisone and emu oil...the skin decided to peel again 3 months out surprise...but I have more days behind me now...7 weeks is my 1st mammo post op...moving onward.

Sending calm healing thoughts and prayers!

(((Hugs)))

Cindy

sciencegal

whytekat GOOD LUCK!!!

Cindy good luck with your one year mammo- I am coming up one mine too (oct 17), it is on my one year anniversary of the diagnosis. I am nervous!

Hugs

GrammyR

Just finished 6 weeks of RADS to sub clavicuar area. From collar bone to mid neck front and back. Not much burning until 7 th week. LORDY - they should have told me to expect this. Northwest is getting cooler - fall now so cannot go uncovered really . Lathering on a mix of Hydrocortisone, petroleum , aloe and other good stuff. 2-3 times a day. Messy but is only stuff that helped. RADS center gave out no samples and only say use " Aquaphor" . Thick petroleum gel does not spead on very easily at this time of year. I also did not have enough light weight soft cotton tee-s. I think a mens V neck undershirt may have worked well. Alas not prepared .Peeling started yesterday so l think am on the down slope now. Just hope RADS is zapping tbat nasty lymph node. See MO tomorrow. Not sched for RO until 1 month.

RMlulu

Grammy -congrats on completing rads! Ouch...sorry your center did not furnish creams...luv emu oil eased the itch. Cooler temps do make free boobing harder, but it feels so good. Take care the skin changes for a few weeks after rads.

Will keep fingers & toes crossed for MO appt & that nasty node zapped to oblivion!

(((Hugs)))

Cindy

Jenny98223

hmmm, I'll be starting my radiation week after next. Going to print what you said spinner so I can keep referring to it. I had the oncotype dx test done and dont have to have chemo...yippeeee. Im surely not looking forward to radiation then tamoxifan after that. Oh well, I guess its better then the alternative. I havent had a cigarette since Oct 6th and Ive gained 8 pounds. I REALLY WANT A CIGARETTE!! I wish you all the best of luck. HUGS, Jenny

RMlulu

Welcome Jenny

Congrats on your oncotype results...yippee no chemo! You will rock rads laser warrior

Rads does not hurt it's more mental the daily grind of showing up and jumping on that table. Ask all your questions and do show and ask on Min/Fri so you know you, girl, skin are doing well. Find ways to celebrate each day...countdown...does radiation make my butt bigger, 30 shades of pink, zip zap done: Hydration is key hydrocortisone and emu oil worked great...ask your RO...may provide samples...and free boobing...a cami with the girl exposed to air ah!

Breathe! Again celebrate your successes ...countdown rads and count up days smoke free! You are strong and each day moving forward is a good day!

(((Hugs)))

Cindy

sciencegal

Hi jenny- congrats on quitting smoking! My hubby quit too after watching my treatment hell (he is afraid of needles) and he is doing the blues e- cigs that have nicotine but not the tar and nasty stuff. They are a lot better at least.

I can see how hard it is- congratulations!!!!

It isnt as scary as I thought, having the rads, like RMlulu said, it is the daily schlepp to get them done that is trying. But the staff are nice and it is okay overall. I didnt have many side effects. And you do get tired, take that into consideration.

I am a couple months out now and back to my normal energy levels. You will get through it fine!!!

GOOD LUCK!!!!!!!!!!!!

RMlulu

Jenny - hope your 1st day, 1st week of rads gives well remember to ask questions and share your concerns. Hydrate hydrate hydrate...moisturize, eat extra protein, and free boobing...yes the girl, the skin, will smile at no clothes...cami with the girl airing out with emu oil or whatever your RO prefers!

Remember show&ask On Mon&Fri so you are comfortable about your skin.

You will rock rads! And yeah, no cigs....you got this laser tag warrior!

(((Hugs)))

Cindy

flat13good

I finsihed mine Sept 2012 - I had 33 rads and after 22 I had to stop for a week I was burned to blisters and my back shoulder was burned.  Aquaphor is wonderful but messy. I am a fair shinned red head so my RO told me that I should take any breaks I needed because I am so fair skinned. The last 11 were painful but I made it through.  Lose clothes are the best and I did not were bras I bought mens V neck t shirts in a large.  I wore them most of the time and at work I would layer over the v necks they helped protect my good clothes from the Aquaphor messey.  The healing process was not to bad I was just glad to be done.  16 rounds of chemo  db mastectomy and then 33 rads.  I am now getting my reconstruction removed next week. I will be better as a Flat Sister and comfortable in my skin. After all is healed I will start the Tattoo process. A new canvas for beautiful flowers so when I look in the Mirror I will see beauty and not scars.  Good luck to all on the journey.

RMlulu

flat13good - a beautiful you! Bloom strength and confidence and joy!

RMlulu

Winter 2013 Rads this bump is for you!

Good info on rads! Good Lick Winter laser tag warriors!

RMlulu

Hi Radies

Bump for Winter Rads 2913-2014 ...go TeamKim and laser tag warriors!

Jenny - how's the countdown...got my Happy Dance shoes ready to celebrate

Wow, 6 mos out mamo good, skin radiant, can't tell we've been on this crazy journey...very surreal...but greatful to all the warriors who cheered me on!

Ok, hydrate, hydrocortisone, emu oil, free boobing, celebrate each day!

You got this warriors!

(((Hugs)))

Cindy

tori39

Hi, Where do you get your emu oil and what brand? Thanks!

RMlulu

Hi Tori - emu premium golden oil by naturals New Zealand on amazon buy the multi pack...ask your RO. GF says our clinic now offers samples . You will do well laser tag warrior!

tori39

Thank you Rmlulu! Third week into it and my skin is already starting to burn Will order emu oil.

RMlulu

Tori ask your RO for RX 2.5% hydrocortisone apply then dab with tip emu oil ...jeans cream or my girls will ice the girl when you get very tender ....but $$$ aquaphor works too but very greasy...

Free boobing a cami with the girl out...nothing to rub or stick 

Hang in there...you've got this laser tag warrior!

(((Hugs)))

Cindy

sciencegal

Good luck Tori! Hang in there- it will be over soon. My RO said if there is no burn she is worried that it hasn't worked, so at least you know those bad cells that could still be hiding there are getting zapped. Small comfort I know.

I used the emu oil all the way through - I put it on right after my appointment, and miaderm before- up until a couple of hours pre-zap. I really think it helped. And LOTS of water- I measured my intake each day and kept a record. You should do at least eight cups a day. I burned but not horribly, and skin is okay now.

BEST of luck!

MaryFox

Thanks for the original post. And all of your following posts have been very informative.  My last chemo is next week and then it's on to rads.  Just after right MX, I had a consultation with an RO I really liked.  She  spent at least an hour with me and DH, answered my questions clearly and left me feeling very confident.  Bad news is that she's since left  that practice and moved out of the region.  So next week I have a consult with the senior member of that same RO practice.  My MO went to Med School with him and recommends him.  Hope it goes well.

Mary

rosecal954

sciencegal: that is interesting from your RO that she is worried the radiation hasn't worked if there is hardly any burn.  I finished rads four weeks ago, had little burn with the 25 regular treatments, but had more reddening with the last 5 boosts.  However, I "felt" burning on my face and arms; asked my RO about it and she said it was unrelated to the radiation.  I wonder if there is any information out there about what she said about the rads not working with little burn. Also I developed a rash about a week after radiation ended which my MO said it was fungal.  We all have different experiences.