A rad onc weighs in on radiation "burns"
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@Spinnerpom Thank you so much for your informative post. Having just finished 25 (Tomo) radiation sessions, this helps a great deal in understanding my skin reactions and clears up some misconceptions.
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This is very helpful. Since the original post is from 2012, I'd just note that since then there has been more research showing the benefits of calendula, a natural herb. My hospital sells calendula cream in their drug store, recommending it for all radiation patients. It's also available in a formula mixed with aloe called Miaderm.
Good luck to everyone.
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Miaderm worked for me.
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i have to have all the nodes treated with rads. Where I am going they can offer me proton radiation. I am thinking about doing it as mine would be on the left side. Does anyone know about this? They said they don't have a lot of data yet on using it fior a breast.. after reading all of this I am more scared
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if you have left breast sided cancer, proton therapy is the way to go. It doesn’t penetrate as deeply as traditional radiation thereby sparing more normal tissue. I wanted that for my treatment but my insurance company (UHC) considers it experimental despite its use for many years. They also turned me down for intraoperative radiation which I was a perfect candidate for. We are being held hostage by our insurance plans!!
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Wow! that information was so helpful! "missing" vs "burned" skin -- though it does feel like a burn. So what is the discoloration about? why is my nipple so extremely sensitive and sore?
Thanks for the information, and it sounds like you really care for your patients. Most of my treatment team have been just wonderful, thank goodness.
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Hello. Im New to this and am not sure if I've posted in correct area. Any advice would be appreciated please.
I had a lumpectomy in Oct 2017, invasive ductal breast cancer, 17mm, grade 3, her2 positive, er positive. Had 9 lymph nodes removed which surgeon was sure had cancer, but they all came back clear of cancer.
Finished chemo beginning of February 2018, 5 weeks in to radiotherapy quite burnt in armpit - swollen, numb and weeping slightly. Scar and immediate area red and swollen. Intramammary lymph node found swollen near operation scar and burn area. What could be causing please? TIA
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I had severe moist desquamation, I haven't found anyone I can relate to, am I the only one
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Tanya61– you are not alone. I had severe moist desquamation, too. By far the worst part of rads for me. Took about 2 weeks after rads before healing skin took over.
To get thru that, I applied aquaphor and Radiaguard 3 times a day. Each time, covering the weepy area with Tefla pads. Then put on a man’s form fitted tank style t-shirt to keep Tefla pads in place and to protect my clothes from the oozy weeping mess.
It does heal. And it is short lived.
I wish you the best
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That is why I am here - looking for answers, too. I visited the radiation nurse and she identified the problem. Her solution was non-stick pads and watch TV in front of a fan. It is so painful, weepy, and I don't know how long to expect this will take to heal.
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welldunn— took my skin about 2 weeks to heal from the weepy, ooziness. Now my skin is just fine. It does get better.
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Mine was pretty bad, too. They gave me silvadine cream and that helped some. I think my skin was pretty much healed within three weeks of finishing rads
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Thank you for the replys. I am feeling better. Nice to hear how well you are doing. Cancer is certainly a lesson on patience.
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Hi everyone. Just sharing my own experience with rads - had 32 sessions, 25 whole breast, chest wall and nodes, and then 7 boosts to the scar area across the breast. During the treatments I used a series of creams - lots of MyGirls Skin Care cream, especially right after each treatment before dressing, and then at least 3 times a day, Cetaphil mixed with Calendula oil. And at least once a day, used a thermal water spray to cool the area, and then a 3 step process I found online and modified - first calendula oil (which I mixed with Cetaphil), followed by pure aloe, followed by a mixture of hemp oil and lavender oil extract. It was a lot of application, but up to the end of the treatment I held up much better than my RO expected given that I have very fair skin. I ended the boosts exactly 2 weeks before leaving on a cruise, and the day we arrived for it, the boost area, which had gotten progressively worse over the 2 weeks since the rads finished, broke open with moist, weepy areas, and actually bled in many of them. So I blotted it gently, slathered on more creams, expecially the Calendula and Cetaphil or MyGirls, stuffed my bra with tissues and went on. I would reapply every time I changed the tissues. Now exactly 2 weeks after that, 4 weeks from the last boost, the area is healed. The skin got a little bit better each day from the time it all broke open.
I really recommend overdoing the creams and oils - don't wait for the burning, do it even before starting rads. It can't hurt and can only help. My RO did tell me that he expected me to have the skin break down from the boosts, and he was right, but once it did happen I just kept on it several times a day. All of the stuff I used except the Cetaphil and the thermal spray I got right off Amazon.
So it does heal - and once it heals as everyone notes, it's pretty quick and you actually see a day to day difference. But the initial breakdown of the skin is disconcerting (particularly when you've just spent 7 hours on an overnight plane flight). I had kept mini bottles of everything in my carryon and was glad to have it handy. You cannot moisturize too much. Wishing all those who are starting rads the best.
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I am grateful to everyone has shared their experience here. I am currently trying to weigh my options between lumpectomy with rads or mastectomy and (maybe) no rads. My question is how often do you actually interact with the RO. I just had my initial consult and was not impressed. He was reading my path report as if it was the first time he had seen it, shuffled through papers to try and find my MRI read. and kept referring to where "they took it out" and I haven't even had surgery yet!!!! The next closest treatment center I could go to would be 45 min drive each way. I work 3pm-3am three days a week, and that sound exhausting trying to juggle that. I am thinking more towards mastectomy and hopefully my final path shows a tumor <5 cm and I won't need rads. Oh and if he said "well, you have small breast" once he said it a dozen times. I can't imagine dealing with this dork for 6 weeks.
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I met with the RO once a week. Much more contact with the rad techs who were warm, welcoming, friendly, and happy to answer questions. Sorry to hear the RO you met with was so off-putting, but it is only a few weeks compared to the rest of your life...
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Hi Dani444,
Like Beaverntx, I met with my RO once weekly. He was outstanding-clearly knew my file in detail, answered all of my questions, and was very caring and compassionate.
May I ask, how did this relationship come to be? If he was selected/assigned to you, can you go back and request a change? Explain that you would like to work with someone whom you can better communicate with. Also, the treatment center I used had several ROs on site. Had I needed to make a change, I could have done so. So maybe investigate making a change at your current location before your treatment starts, so you don’t have to take on more driving.
Also, I would suggest that you make your surgery choice on what gives you the greatest peace of mind. As I have read many times, sometimes to do less is good. You can always go forward later if circumstances dictate a mastectomy, but you can’t reverse it. The breast cancer literature generally views lumpectomy plus radiation as offering the same survival rateas a mastectomy.
Of course, we all need to decide on what is best for us. It’s your body, your life, and you need to be comfortable with your choice and the physicians who treat you. So I would encourage you to get the best possible mix of location, good physician, and expected outcome.
My very best to you.
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Hello, I finished rads 2 weeks ago (28 whole breast 5 boosts) and ended up with skin breakdown under my breast by the 2nd boost. I am now using triple antibiotic ointment and telfa pads. My breast feels like a small knife was left in it. I am also having trouble with my arm where nodes were taken out and then radiation boost - pain and discomfort causing lack of sleep. I get no sympathy for this pain and was reluctantly given Tramadol. Tramadol does not work. I also take 3 Advils and 2 extra strength tylenols to get through until about 1 am then I just take the Advil again. It is wearing me down. I faithfully put calendula oil, MIaderm and aquifor on my breast during radiation. I don't feel it helped me. Post radiation has me feeling as bad as I felt in chemo- nausea, fatigue, insomnia. It seems once you are this far into treatment the MO, RO and BS all drop you and my primary care doc isn't experienced in dealing with my issues. I can't wait to feel better.
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BAzelda, sounds bad and sounds like the radiologist really let you down. I hope you heal soon.
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JosieO, I was assigned this Dr. and he is the only one at the hospital closest to me. It would be a 45 minute drive (without traffic) each way to the next closest hospital that does radiation. Some of the doctors I work with in my job did say he is a good Dr. and really knows his stuff, but always finish with his bedside manner is lacking.
Beaverntx. I know it will only be 6 weeks, but I am already so emotionally drained, that feels like 6 years to me. Thank you for the input on surgery choice. I appreciate all the support I have received on here!!!
BAZelda, I am sorry you are having a bad time, I hope you feel better soon.
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Dani444,
Thank you for the clarification-disappointing that you don’t have more choice, and would certainly not want you to take on the stress that comes with all of that additional driving. The good things in your additional response are that 1) you have a way to find out about his skills, which are good, and 2) others see the lack of bedside manner. That makes me feel better for you. Let us hope that the lack of personality is greatly outweighed by skills and competence. Good wishes to you as you move forward.
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BAZeida,
I join everyone here in wishing you relief from this awful discomfort. Hoping that someone comes forward to help you
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I know it has been years but if Spinnerpom is still around, thank you! I needed that article you posted in 2012 like you wouldn't believe!
The short version: In the summer of 2003 I had a lumpectomy and then a re-excision. My breast was bright red, cherry red, immediately after the surgery and remained like that for years. I had 4 rounds of chemo then radiation in Dec 2003-Feb 2004.
The RO didn't even want to do the radiation, she thought I had inflammatory BC. By day 21 of radiation I had jellybean size blisters on the top of my breast and the whole underside had slough, no skin. I was treated with Silvadine for two weeks, then had the rest of my rads. It took a long time to heal, I don't remember how long, but I was left with very tough skin.
Fast forward to Jan 2019, recurrence with mastectomy with DIEP reconstruction. Now dealing with large wounds on the underside of my breast, open wounds that have no skin. (looks like an uncooked beef roast without fat). They bleed and ooze. My doctor said they were caused by the radiation I had in 2003, he told me prior to surgery that this could happen. I have been so frustrated as my Plastic Surgeon told me to only use soap and water and keep them covered. I am on my 6th box of 100 non-adherent gauze pads! Today I called to see if there was anything I could do other that what I was directed to do and increasing protein in my diet. I wanted to go to a wound center. I was told no, that it will just take time.
I feel so much better after reading that article. It seems to confirm what my doctor told me. He said the wounds have granular tissue, not skin, but that the skin surrounding the wound will grow and gradually fill in and heal. I need to go back to work in May and I plan to go back even without completely healed wounds because I simply can't stay out any longer.
Spinnerpom, thank you, thank you, thank you! I was running out of hope and felt so frustrated. You would think my second time with breast cancer would be easier, it's not, but it doesn't prevent feelings of positive hope from happening through information on this message board!
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Hi Mavericksmom,
I had huge wound healing issues after my mastectomies and my surgeon & plastic surgeon both recommended a drink supplement called Juven to help speed the healing. Juven is widely used in wound centers for people who are having trouble healing, and it is also used for radiation wounds. Unfortunately, it's a little pricey (insurance doesn't usually cover it, although Medicare sometimes does). You take it twice a day. I like the Orange flavor best. I mix it with water and it tastes kind of like Tang. You can buy it on Amazon.
Its main ingredients are a blend of amino acids (glutamine, arginine, and CaHMB) that promote and support the formation of new tissue and collagen. It was also recently reformulated to include zinc, vitamin C, and collagen protein—all of which also support wound healing. I highly recommend it!
Here is more info from the manufacturer: https://abbottnutrition.com/juven
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Hello everyone. I hope this finds you all having a good day. Congratulations to all who have finished rads, and I hope that you get through the afterwards with no complications. And all the best to use ours who are going through rads now or waiting to start.
i saw my oncologist on Thursday last week and, to my surprise, she has terminated me from Cancer Care MB and I will see only my GP in future. She is sending his office a care plan about what she feels should be done over the next 3 to 5 years, but apparently he is under no obligation to follow her plan. So, after a year and a half under her care, with three series of scans and other tests, I am done. I am pleased to be considered cancer free, but still a little concerned about recurrence. If anything comes up, my doctor is send me directly to the surgeon. But now I feel that I can move forward and, not forgetting the last two years, be thankful for how things have gone.
Spring is slow to come this year, and it has been very dry, so the farmers are out seeding and keeping their fingers crossed for rain. We have crocuses blooming in our flowerbeds, with tulips and lilies now between three to seven inches high. Hubby is planning to mow for the first time this year.
Now must go but wishing you all the best and will be back soon. Hugs,
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Do you suppose the docs don't get into the details of our Rad damaged skin/breasts because there's little 'need to know'? That may sound a little condescending but it does get them off the hook for poor education along these lines. So instead they emphasize lotions to help us help ourselvesto suffer less (palliative).
So does anyone else think a little extra Protein each day of rads might help our good cells reproduce a little quicker? As in a high Protein drink?
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Here is something new to try: Mepitel film. It has been researched abroad for breast cancer radiation. It is standard care in New Zealand and recent studies have been published in Denmark and the UK. It is being used in a few places in the US and a study has just been completed in the US but not published yet.
Mepitel is produced in Sweden. It was invented to protect the skin of premature infants. It comes in sheets (I purchased mine OTC from CVS pharmacy.). I showed my RO the published studies and he said I could try. It is very thin and transparent, like cellophane. The sheets are roughly 4x6 inches. They stay in place without adhesive, just static cling. They pull off easily when you want to remove them.
I was apprehensive because I have all the risk factors for a bad experience with radiation: older (67 yrs), fair, large breasts, and overweight. I wanted to do a prone position table which would have protected my armpit, heart, and lung, but none are available in Seattle. I consulted with a RO in the Midwest and she said they are experimenting with Mepitel.
My husband applied the sheets (it took approximately 6) to cover everything: breast, armpit, under boob. I had the friendly Techs draw on me where the radiation will land and we covered it all with Mepitel. A week before rads, I started applying the lotions with Calendula, aloe Vera, etc. The night before rads, we applied the Mepitel films. Your skin can still breathe. You can bathe with it on. Every few days, I would remove it all after bathing and apply all the lotions again. Dry out, apply Mepitel again.
My Techs complemented me on my how great my skin looked. (?!) It looked pink and then reddish to me. My RO was pleased and said I did better than he expected. BUT, after my 20 treatments, my armpit got redder and broke out in some blisters 🙀. Ouch! Break out the refrigerated gel patch. My underboob never had any problems. My nipple was tender and liked being protected by a second layer of “skin." I never got the dreaded moist desquamation. My skin where the boosts were done was fine. Used the Mepitel for 10 days post treatment. Skin in armpit along the fold/where the SNB scar is still peeling but painless.
I had proton radiation for the whole breast bc the tumowas on the left side. Used the gated snorkel to keep my heart in the clear, Lung got clipped with radiation but no problems so far.
Google it. It was worth the extra effort to me. Now, what to do about post radiation fatigue?
- Thanks to everyone for sharing their experience and information!
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Thank you for sharing. Very insightful!
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thank you for this. I was just diagnosed and I am facing radiation. In 1969 my mother-in-law had radiation for breast cancer. She was left permanently with dark red skin all over her chest and it damaged the lining of her heart. I realize there has been many changes since that time but I can not get that out of my head. How do I move forward with radiation as my treatment?
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I'm sorry to hear about your experience with radiation. I had similar issues as someone with very fair skin and largish breasts. I was fine all through 25 whole breast rad treatments but about a week and a half later, various parts of my breast began to get very red and very painful. Different areas would get red at different times, it was weird. It was like terrible peeling sunburn and took almost 3 weeks to fully heal. Silvadene cream from rad onc office was super helpful but I couldn't wear a bra so had to take off work.
On fatigue, I had none through chemo and radiation, but about 4 or 5 months later I started to have crazy fatigue that would come and go. This went on for two years. Sometimes exercise helped, sometimes not. I was mostly freaked out that no one could tell me why this was happening. But, it's clear to me now that a decent percentage of women have long-term fatigue issues that likely emanate from the treatment. But, eventually it went away. Hope yours does not last long
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