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Burn under arm 4 weeks into radiation treatment

so I am getting a little worried here because I’m supposed to be getting radiation therapy to both my left and right breast. Now on the left side, they are radiating the nodes under my left arm and by my collarbone. I had a mastectomy on the left side back in January and immediate reconstruction with an LD flap. My right breast only had a very small cancer behind the nipple, and no affected nodes. I had one lymph node on the left side that had cancer cells. So what I don’t understand is four weeks into treatment with radiation, my left armpit isn’t even pink but my right armpit is so burnt it’s peeling. So I’m freaking out that they’ve been radiating the wrong side or is this something that just happens?

Comments

  • maggie15
    maggie15 Member Posts: 1,412

    @sonya16 , Treatment side effects can differ for each person so you should ask your RO/nurse to examine your armpit and suggest a remedy. My radiated armpit got a bit pink but the only anomaly was the hair never grew back. If you have concerns about the details of your treatment you need to ask your medical providers since they are the ones prescribing and supervising it. All the best finishing up your radiation.

  • lw422
    lw422 Member Posts: 1,417
    edited June 2023

    Hi Sonya. I'm sorry you are having so many concerns with radiation. How's your throat doing? As far as the peeling, do ask your RO about it. It may simply be that to radiate all the breast tissue, some of the right axilla is included. There is a section of breast tissue called the Tail of Spence that extends into the armpit (axilla). Take care; you are almost done with it.

    I remember being most concerned because I had a circle of red skin on my back (shoulder). I didn't realize that the radiation would travel all the way through my shoulder and out the back.

  • sonya16
    sonya16 Member Posts: 72

    Maggie15, thank you for your response to my post. After my treatment today, I spoke to the RO’s PA (my RO isn’t until tomorrow, and I do have an appointment with him). She would have given me a sulfur ointment prescription for the skin under my arm, but I am allergic to that. So for now, she just told me to first put on some bacitracin, let it dry, and then put my cream under my arm to try to keep it moist. I didn’t really get any answer about why that arm pit is so bad and burned but hopefully I’ll get my answers tomorrow from my RO.

    Lw422, believe it or not, my throat issue seems to have resolved like yours did during treatment. (Knock wood). As noted above in response to Maggie15’s message, I don’t really have an answer yet as to why that armpit is burned and peeling (The skin is beginning to crack open as well.). I just think it’s weird that I’m having a problem on that side where there was no lymph node involvement and why would they even radiate there? I’m sure tomorrow though I’ll get my answer from my RO. I was just wondering if this was a common occurrence when a breast is being radiated. And yes, that’s pretty strange that your back was burned from it. That would’ve concerned me for sure! I thought radiation was so targeted now that those sort of things didn’t happen but obviously I don’t know a whole lot about this whole thing. One more day on my right side and then another six days on my left. And then I know I’ve been told that the burns will get worse, but I’m trying not to dwell on that too much. Also, I forgot about the tail of Spence. I know when I had my left mastectomy, and that was taken out all of those nodes were negative. But one sentinel node was positive on the left side. I am interested to see what my RO says about this messed up arm pit on the right side when I see him tomorrow.

    thank you both for your posts, I really appreciate the feedback and information. I am finding that throughout this whole journey, I really didn’t get all the details from any of the healthcare providers until certain things happened. Yes they tell you the basic things, but not everything - but I suppose that might be difficult to do because everyone is different.

  • lw422
    lw422 Member Posts: 1,417

    Sonya—I'm so glad your throat is better! I know that was miserable. Thankfully the red circle on my back wasn't painful at all… just weird. It did itch a bit when rads were done. Hang in there, girl.

  • maggie15
    maggie15 Member Posts: 1,412

    Hi Sonya, I hope your RO was able to answer your questions and come up with a treatment for your armpit. It's good that the end of radiation is in sight. It takes a while after it ends to get back to normal but the skin does clear up and the fatigue (if it hits you) fades.

    I don't think they warn you about every strange side effect since they don't all happen to everyone. They do target the beams but missing one organ means another one is in the way. My skin was never very burned but I ended out with a strange blend of fatigue and insomnia; the RO sent me to the acupuncture clinic for this. I also had some late stage pulmonary issues. Hopefully the sore throat and the armpit burn will be it for you. Do something nice for yourself to celebrate the end of treatment.

  • sonya16
    sonya16 Member Posts: 72

    Hi Maggie,

    yes, I did get an answer from my RO when I saw him yesterday on the burned right arm pit. He explained to me that the angle at which they targeted the radiation on my right breast, caught the armpit on that side due to the way the breast skin is laying during treatment. My right breast for which I only needed a lumpectomy was small to begin with, but smaller now. Thankfully yesterday they were done radiating the right breast and I only have four days left on the left side where the major problems were. That arm pit is only just now getting burned. I I am trying to stay on top of it between applying aloe and cream alternately.

    it is interesting you should mention the mix of fatigue and insomnia. This is exactly what I have been dealing with even more so the past two weeks. And I just happen to have an acupuncture appointment on Friday. I don’t know quite what to expect from that but I am looking forward to it. And I do worry about lung or heart issues down the road, even though I have spoken to my RO about this on several occasions with my concerns. Each time he has assured me that I shouldn’t worry about it, but I take that with a grain of salt.

  • maggie15
    maggie15 Member Posts: 1,412
    edited June 2023

    Hi Sonya,

    I'm glad your RO explained how the burn occurred. I also was able to skip chemo (oncotype one point below the recommendation level) but they make up for that with more aggressive radiation. While the total grays are within the limits the multiple angles mean the beams hit a wider area of body tissue.

    I had never tried acupuncture before but it did help with the insomnia. It also helped some with the breast LE that developed post rads. For the hardening/shrinking breast tissue the NP recommended calendula ointment (I ordered Just Calendula online from pureremedy.com.) She said to use it after the initial burn damage was no longer raw. It worked pretty well; I still use it.

    You are wise to take your RO's assurances with a grain of salt. They quickly mention "cough" among other possible SEs but never hint at how serious the damage that causes that cough can be. It usually happens 3 to 4 months out but I somehow skipped the early easily treatable stage and ended out with late stage RIPF. It wasn't until after 7 weeks of dealing with the pneumonia?/lung cancer? that my PCP, a radiologist and a pulmonologist couldn't identify that I thought of contacting the RO. He told me it's pretty rare (I was his fourth case in his 33 year career) but he also said they are pretty low key about mentioning the dry cough since they don't want everyone with allergies/colds/flu calling the office. He did ask for permission to transfer my blood work /scans from a covid/cancer clinical trial I had been in so that one of his fellows could look at the data and see if there were any markers that might have predicted what happened. It would be nice if there were an easy way they could monitor potential radiation toxicity in the future.

    I hope the rest of radiation goes well and all your SEs clear up. I thought that sailing through surgery and no chemo would make things easy, but you live and learn.

  • sonya16
    sonya16 Member Posts: 72

    Hi Maggie,

    I also thought that not having chemo would make the journey easier but first I had setbacks in surgery (after the mastectomy and reconstructive surgery with the LD flap, I developed a hematoma the day after I got home from the hospital and I had to be rushed back for surgery to stop the bleeding and the LD flap was reversed. Three weeks later I went back in and had the LD flap put back in place). I had to wait to heal before radiation therapy and then just before it was scheduled to begin, I broke a rib going up the stairs, and catching the toe of my sneaker at the top on the carpet, which delayed it another four weeks. it’s just been one thing after another. But anyway, what can you do? You just get through it and no one could’ve predicted the way things were going to happen. And I feel fortunate,. I’ve met so many strong women going through so much more.

    I wanted to tell you that I think that the acupuncture might help. I told the acupuncturist about my insomnia and fatigue as well as my anxiety. She said that it would take a few sessions to see any real results and told me that I might feel fatigue for the next couple of days. The weird thing is I feel like I have more energy than ever. But I still have the insomnia.


    Unfortunately, I had too much energy because I overdid it with my left side today where the surgery had been and where I’m being radiated in the area under my arm is very swollen. Of course that’s where part of the LD flap is - there’s like a little pouch where it runs under my arm to create the breast. I’m trying not to get too worried about that and that it’s just a strain. I had pulled my summer quilt out of the washer, not expecting it to be as heavy as it was, and then I decided that maybe I should do some of my arm exercises to work out the strain. Wrong thing to do! . I’m sure that area is inflamed to begin with and I just made it worse by being too active but of course I worry that I did some thing to harm the area.. I just wish I could get beyond the anxiety and worry all the time. I was always a worrier, but ever since the last surgery, I can’t seem to put a lid on it.

    With regard to your late stage RIPF, which I’m so sorry that had to happen to you, how are you feeling? Did you receive any treatment for it?

  • maggie15
    maggie15 Member Posts: 1,412

    Hi Sonya,

    I'm glad the acupuncture helped your fatigue. Mine was the opposite but having one of the problems lessened is a help. I hope the acupuncturist is right about cumulative improvement.

    Wow! Your surgery was quite the ordeal. Mine was pretty straightforward (lumpectomy with SNB.) I'm very sorry you tripped and broke your rib but that makes me feel like I'm not the only one. About six weeks post rads (on a cane due to arthritis) I leaned to reach the pepper while cooking and set myself on fire. I spent a week in the burn unit. Fortunately my face and most of my arms and torso healed well. My left hand and radiated breast have permanent nerve damage but the pain is managed.

    I'm sorry you strained your underarm with the wet quilt. Maybe the RO or PA would have some advice for that or you could check in with your surgeon. During radiation I reached for a box of pasta on a high shelf which fell and hit my armpit causing all the lymph nodes to swell. I couldn't do anything until after rads finished when icing the area brought the swelling down.

    The RIPF had me on oxygen and high dose prednisone for three months until the out-of-control scarring abated. I've had a couple of exacerbations since then; my right lung doesn't work too well but it hasn't spread to my left lung yet. Like many I do what I can to avoid recurrence and hope that the fates are kind to me. Surprisingly that incident resolved any anxiety since I now feel like I'm living in bonus time. I'm continuing the lockdown life but the warm weather means I can talk to people and do things outside, a real treat after winter.

    I hope that you heal well after radiation. We sign treatment consent forms acknowledging the rare adverse effects and accept the ordinary mishaps of life but it is still a bit of a shock when you find yourself in the small group dealing with them. You are right that someone always has it worse. If the acupuncture doesn't lessen your anxiety getting pharmacological help would be a good idea. Sending good healing vibes your way!

  • sonya16
    sonya16 Member Posts: 72

    Thanks, Maggie. That’s terrible that you burned yourself. It must’ve been so painful. It’s crazy the things that we end up doing to ourselves sometimes. My daughter tells me I need to be more mindful and she’s probably right. After so many years at work multitasking, I suppose I am never really in the moment, but thinking of the next thing that I want to do. Which is why I wasn’t paying too much attention as to where my feet were going up the stairs. I’m so glad that you healed well, though it must’ve taken a long time. A broken rib is nothing compared to that.

    Boy, you have really been through a lot. Having the lung damage is a pretty scary thing. I wonder if there’s anyway they can see that coming? Or do you just wait for symptoms to happen? Or I hope it hasn’t restricted the quality of your life too much.

    My arm area still hurts, but I will speak to the RO tomorrow about it hopefully before my treatment. Also, I have been having a problem with a very sensitive nipple on my right breast, and I’ve been alternating between biafine and aloe directly from the plant. Yesterday I must’ve put too much ELO on because when I went to put the cream on in the evening, I noticed that the aloe drive to a film so I tried to get it off wasn’t too successful, so I just put the cream on top of it. This morning when I took my shower, there’s only so much I could do with soap and water and the aloe really didn’t want to come off. So I tried to use a soft Q-tip to get it off, but then I noticed that the crease between the nipple and the areola looked like it was weeping. So I put a call into my breast surgeon and he was kind enough to call me back and told me not to put any more aloe on it and just use the cream. The problem is I never got all the aloe off, but I wasn’t going to keep picking at it. This evening my nipple is rather painful. Did you have any issues like this? It seems like there’s always something for me to worry and become anxious about.

    I really want to thank you for your support and encouragement. I hope you don’t mind this back-and-forth but you’ve really been so helpful.

  • maggie15
    maggie15 Member Posts: 1,412

    Hi Sonya, I don't think accidents are always caused by multitasking or being inattentive. My burn was caused by trying to avoid pain; I was using a cane on an ortho's "wait and see" protocol before treating my arthritic left knee. When my right knee gave trouble a year later he went straight to an MRI and treatment given the history. Anyone can trip on the stairs and since the dry quilt was easy to handle it would not be instinctive to deductively reason that the wet version wouldn't be. When I ended up in the ER with a concussion from a fall while out walking the focus was on shoes, blood sugar levels, med interactions, balance and all the usual suspects. Three months later I passed out briefly during a pulmonary function test due to a momentary large drop in oxygen caused by coughing. In retrospect that was what caused the concussion fall and lessening the cough by increasing my inhaled steroids has really improved my life. Figuring things out sometimes means thinking outside the box; I had never heard of cough syncope.

    I'm glad your breast surgeon returned your call and advised you on how to handle your nipple sensitivity. I have read that hot water is the best method for removing aloe from skin. I ended up in a local wound surgeon's clinic for my irritated lumpectomy scar on my areola between burn clinic appointments. While he deals mostly with diabetic wounds he prescribed a silver cream that he said was considered outdated by latest clinical standards but had worked really well for his burn patients 15 years previously during his residency. It worked well for me so I'm glad I ended up seeing him. While your BS is the first one to contact as you heal up it is good to know that these wound surgeons are around to help in difficult cases.

    The ILD pulmonologist I was referred to was not surprised about my adverse reaction to radiation since I had been hospitalized for an upper GI bleed and diagnosed with Barrett's esophagus from silent GERD. He told me that my lungs contained microaspirated gastric acid which increased the scarring reaction to radiation injury. A lung cancer radiologist would have been aware of this since they aim for the lung but not a breast RO. Sometimes specialization has its drawbacks. My orders are no respiratory infections, no intubation and no meds with ILD as a SE. Avoiding the first two is not foolproof and has restricted how I live my life but I am OK. In my experience letting go of regrets and focusing on what is positive makes one happier.

    Hopefully your RO was able to help with the strained arm. I'm enjoying this conversation. I don't get much opportunity to talk to people since the end of the covid era virtual world. Hang in there; only a few more days of radiation.

  • sonya16
    sonya16 Member Posts: 72

    Hi Maggie,

    It is good to hear from you so soon I am also enjoying our conversations and have already learned a lot from our discussions

    You are correct in that sometimes accidents just happen. And I do know that in trying to protect one part of your body sometimes it throws you off in that you do things a little bit differently

    it is very interesting that your upper GI bleed and Barrett's esophagus from silent GERD made you susceptible to the scarring in your lungs and I agree with you 100% that medical specialization as it is because they don’t always look at the entire picture I know when I had Lyme disease it took four years for a doctor to finally diagnose and treat it, because none of the other doctors I saw would even consider that. instead I was on a merry go round of different tests, etc.

    thank you for your input regarding the silver cream. I didn’t realize that there were all surgeons. I will definitely keep that in mind if this doesn’t get any better.

    My RO was that in today, but I spoke to another one. I was concerned that the radiation may have decreased the integrity of the LD flap and would it heal from the strain. She told me that it would, but it just may take longer.

    tomorrow is my last treatment. For some reason I came away today with a lot of burning of the skin not only on my left side which is all they’re doing supposedly now, but also on the right side of my chest. I have this small strip of unburnt skin that goes down my sternum. I also felt extremely fatigued this afternoon, and a little short of breath which concerns me. Now it just may be anxiety because I’m so worried about damage to the lungs and/or heart.

    Do you still have a cough or does the inhaler eliminate it? I can totally see how they missed the issue of your syncope because naturally they would go to the usual causes first and I know a concussion is no fun. I’ve been there myself I’m so glad they finally figured it out for you.

  • sonya16
    sonya16 Member Posts: 72

    so today was the last day of radiation treatment. I’m so glad that’s fine but braving myself for more SE’s. . I also noticed today that the left side of my neck is burned up to my chin. That has me a little freaked because I know they did the nodes at the left clavicle but nothing was said about my neck. Or is this the same deal as my burnt right armpit where no nodes were being irradiated but the rays caught the armpit while radiating the breast?

  • maggie15
    maggie15 Member Posts: 1,412

    Hi Sonya, When radiation finishes the SEs do get worse for a while. The burn on the neck is probably the same deal as before; the rays focused on the clavicle probably continued through to the neck. Even though you aren't going for daily treatment you can always call to consult the PA or ask for an appointment with the RO if you have any concerns. I did that and was seen the next day.

    My fatigue got worse for a while before things improved. Do you have another acupuncture appointment scheduled? If you are concerned about shortness of breath you can buy a pulse oximeter. Like a thermometer it gives you a numerical measurement so you know if it is a real problem or just a bit of anxiety. If it goes below 90 you should see urgent care or the ER. Sometimes I'm surprised at how my gut evaluation of the situation is a bit off.

    My cough is much better since the pulmonologist raised the steroid dose to the maximum level. I'd like to taper down a bit but will have to do it gradually. The inhaler does cause side effects but nowhere near as bad as the oral or IV meds. The cough is caused by nerves which are normally covered up being exposed to air because of the tissue distortion from the fibrosis. I haven't had a syncope episode for six months and can drive again.

    While it won't happen right away things should get better. Keep us updated on your progress. Enjoy not having to listen to the LINAC every day. I used to laugh to myself when the techs asked which music channel I wanted to listen to since it was always drowned out by the machine noise.

  • sonya16
    sonya16 Member Posts: 72

    Hi Maggie,

    well 2 days out from the end of rt the burned skin is getting worse and I am fatigued. The area that was reconstructed with the LD flap and was radiated is very sore and feels swollen. I can’t find any info on the effects of radiation on an LD flap. I did not have an implant put in with it as I had small breasts to begin with and the lat muscle was sufficient to match the right breast. I went to my lymphedema pt today and she just gently massaged my arm and the area on my shoulder/back area behind that arm. There is a little pouch under my arm where the lat muscle is tunneled thru to the breast area that really is feeling quite tight and swollen. I should probably post something to see if anyone else has had this type of reconstruction before radiation and what they experienced.

    I do have another appointment with the acupuncturist at the end of the month.

    I’m glad your cough is better and you must be so relieved to be able to drive again. I am glad to not have to drive to my treatments every day. It was very much like driving to work every day in so much traffic, construction areas, etc.

    it really helps to discuss these issues and receive this feedback. Thank you

  • maggie15
    maggie15 Member Posts: 1,412

    Hi Sonya, While it's not fun the fatigue is to be expected. From what I've read flaps respond to radiation better than implants. However, there is a greater chance of LE in all situations when nodes are radiated. It's probably too early for you to tell about your case, however. The LE PT might be able to give you an idea of what is to be expected and when you should contact your surgeon or RO. I had a lumpectomy so I can't help you here. I did develop breast LE after radiation and the thermal burn. I was supposed to have a reduction on my non-cancer breast to even out the cup size difference but my cancer side now varies from being a bit bigger to a bit smaller. Before treatment (at a research hospital) my arm was measured by a perometer and my body fluid by a bioimpedance spectroscope so they are able to track the breast fluctuations. I have to do self drainage massage, care for the skin and deal with nerve pain (thankfully only on contact.) I averted a second surgery and look symmetrical in clothes but I need meds to counteract blankets/breast exams and avoid hugs. It's a pain but manageable.

    I hope the acupuncture helps the fatigue, insomnia and swelling. You will probably need PT to aid your arm's range of motion. There is a fine line between beneficial exercise and overdoing it. Keep asking questions if you have them. That's one reason doctors have PAs and nurses on their staff. Not having to drive for radiation every day does make your life easier.

  • sonya16
    sonya16 Member Posts: 72

    Hi Maggie,

    yes, the LE PT did tell me it was a bit early to determine LE in my case. But she measures my arm when I go to see her and has given me the measurements to get a compression sleeve. I do know I am at greater risk because of the radiation to my lymph nodes.

    you are not going to believe this, but this afternoon, I went to sit on my office chair, and as the chair has rollers and sits on a glass mat, It went flying out from underneath of me, and I fell!!! There are no arms on the chair, and I do have a cushion on the seat that sometimes catches my rear end when I go to sit. It happened so fast I landed on my back and tried to brace my elbows backwards and I did jar my surgery site somewhat. Hopefully it will be all right but it is really sore right now. I. seem to be a walking disaster area these days.

    Anyway, the LE tells me that right now there’s a lot of inflammation in the lymph nodes and of course, and the entire flap area Due to the radiation. I didn’t think they were going to radiate the entire breast but the RO told me they did because of the possibility of microscopic cancer cells even though there were very wide clear margins when the mastectomy it was done.

    that’s pretty cool that they were able to track your breast fluctuations. I would’ve never known these things existed. The LE will teach me how to self massage, and did warn me about injury to the arm, and even warned about having my nails done in a salon; to be sure that it is clean. There’s still so much for me to learn and understand.

  • maggie15
    maggie15 Member Posts: 1,412

    Hi Sonya, I'm sorry you strained your surgery site when your chair rolled out from under you. Little things that wouldn't be a big deal under normal circumstances become problematic when you are trying to heal. Even now when I get a little grease splatter on my arm when cooking I get a much more painful burn than I expect, probably because the skin tissue there has been so burn-injured previously. When we recover from things our bodies don't always go back to how the were before.

    I'm glad you are seeing a LE PT proactively. Hopefully you won't need her later but the chances of having to deal with LE are greater due to your treatment. Having a compression sleeve on hand might help prevent your arm from swelling. I don't wear a compression bra because pressure makes the nerve damage really painful. They also have compression tanks and tees if the LE occurs in your trunk or underarm.

    My RO is doing a study comparing perometer and bioimpedance spectroscope measurements. Patients also have to fill out a questionnaire each time they are measured. The BIS machine is like stepping on a scale which sends low level electrical impulses through the body and determines fluid levels by measuring how the electrical currents are slowed. One of the peripheral things that has come out of this study is that BIS can measure truncal and breast LE that can't be measured like an arm. This is probably useful but, in my opinion, it would be better if they could find ways to prevent or more successfully treat LE.

    My RO told me they radiate a much larger area when think cancer cells are starting to spread. My nodal involvement was not as great as yours but the one node and LVI meant that they were attempting to kill the cells before they left the local area. Hopefully they got them making the SEs worth it but there is no way of knowing how effective it's been. Many of the SEs go away after several months while occasionally some like LE, tissue changes and nerve damage remain. Then there are those rare long term effects if you happen to be one of the unlucky few. Radiation is pretty toxic so I guess the damage it can do shouldn't be surprising.

    I hope you have a good weekend and your surgery/radiation site starts to feel better.