Radiation side effects?
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I’ve on my 40 th treatment to my right breast and radiation is the worst side effects I’m always fatigued, I’ve got burns and peeling on my breast and the incision under arm my arm where they took my lymph nodes has opened back up from my treatments.
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I had 30treatments. Had no side effects other than slight skin burn. Now chemo and n the other hand...
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Shellb and talk2lj, welcome to the BCO community too! Shellb, we would like to recommend you the article from our main site Managing Skin Side Effects of radiation, we thought it might be of help!
Please, keep us posted on how you're doing.
Best wishes,
From the Mods
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People, check into proton rads. I was very happy with my experience getting protons. It does not men you won't have SEs at all, but the targeting is much better so the "wash" onto other tissues is less, and there is no "exit" beam (back shoulder etc are spared).
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I am considering Proton Beam here in AZ, it's only at Mayo. Has anyone had radiation of any type while having pain under arm and down the chest wall? I am concerned about still having that pain and compounding it with radiation. Any one have any thoughts on this? I am older (69) Diagnosed this year,bilateral mastectomies, direct reconstruction with implants so I am concerned about that. Thanks!
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Santabarbar -- Is the exit beam real? I had left breast radiation (no nodes) and about two weeks after completion my upper back, neck and shoulders have been extremely tense. My radiologist said that part of my body was not affected, but my physical therapist said it probably was. I did rupture a cervical disc 25 years ago so I thought maybe that was affected because of being on my back on so many hard tables through the treatment. Where does the beam exit when it's done of one breast? Does damage from the exit beam last forever?
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I am not positive because it depends on positioning I think. Maybe the shoulder blade area, because some people get a syndrome called radiation induced braxhial plexopathy and the brachial plexus is part of the shoulder/upper back.
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Thanks very much to everyone that responded to my queries. And thanks very much for the education about proton radiation option. I have now asked and been referred for this consult. Don't know yet if it is an option for me or not. My provider's institution only offers traditional radiation as an option but no other option was ever even mentioned. Their treatment was heavily pushed. I am very thankful for communication and support platforms like this because I am finding out how dependent you are as a patient on the medical systems and providers you encounter, and how important it is to keep asking questions and looking for information outside of a single source. I have a left sided DCIS with microinvasion so the issue of scatter and my heart matters to me.
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a1b2c3
Great you can use that info!
Let me mention my center DID work with me on pricing. They limited my copay to my out of pocket max for the year and said the rest of dealing w my insurance would be on them. I happily agreed as my max out of pocket was going to happen anyway...
Protons are less-well-known-about and until quite recently the clinical trials proving equal efficacy had not been completed. So not very many patients have looked into it. As a result, some centers would not be full if they did not work with some patents who could opt for regular rads. They run the machinery all day 5 days a week and they may as well be fully scheduled. So if insurance issues come up, ask if they will work w you.
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May I suggest that - while the support offered here is stupendous, and given with all with the best intent - none of us are in the medical profession, and not really qualified to address some of the questions coming up regarding exit beams, anatomy, etc.
Take the advice received with the wonderful spirit in which it is given, but talk with your doctors.
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Yes and yes, but also question authority, compare notes, and get second and third opinions.
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Yes, I thoroughly agree that it's important to get information from more than one source. My first consult with a surgeon was just really aggressive and traumatic...second surgeon's plan was actually consistent with standard current guidelines and also this second surgeon was kind and considerate. I would like to know if anyone has had proton radiation therapy at Seattle Cancer Care Alliance or heard anything about this at SCCA or had experiences with SCCA in general?
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I'm really worried about the prospect of having any radiation. I have ILD, Interstitiall Lung Disease, which is generally fatal within 2-5 years. I'm not quite sure how long I've had this fatal disease but am worried that radiation could damage my already compromised lungs. I met with the Radiology Dr and she was so confident it would not affect my lungs at all but I'm not convinced at all. Also due to a faulty MRI, I was forced to have 1st a lumpectomy and then after they opened me up, they discovered way more involvement. A month later I finally had a rmasectomy, I feel like I've been through a "slice and dice" machine. It would really help for me to know if any of you have experienced any lung damage after radiation?
Thanks so much,
Linda
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I had proton rads on east coast. I picked protons due to fears about heart/lung w Left-sided BC. No lingering effects. I am on pentoxifylline to prevent fibrosis (for one year). I went to ProCure in NJ -- they also have a facility in Nebraska and a new one in Manhattan. Great place, great people. Very satisfied, My rads was completed in March '19.
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Anjolie --- I was also very worried about lung damage due to radiation. The radiologist knew that. He showed me the film after my treatment to show me that just a tiny edge of my lung was involved. My cancer was on the left which makes the heart also possibly damaged. However, the film showed he didn't come close to my heart. They have come a long way with radiation safety. There is no proton treatment near me yet. However, we do have the prone position radiation which is supposed to miss the heart and lung. For that you lay on your stomach with your breast hanging down away from your body. Your city might have the prone position technique.
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Linda -
So sorry to hear what you're going through with ILD on top of the cancer. Do you know if they plan to cover your nodes as well as your chest wall? If only the chest wall and not your nodes there is far less chance of damage to your lung. You might ask your RO. Also, as Jessie123 wrote, there is also the possibility of prone positioning, or IMRT might be appropriate.
Most people have no lung problems, but you're in a special situation and are smart to ask. I wouldn't hesitate for one moment to get a second opinion and/or speak to your pulmonologist or internist and have them contact your RO. Let those who know you best and have the medical knowledge help you interpret your risk for recurrence, the estimate of how much radiation might cut that risk, and risk of side effects for your particular profile. Your RO may be absolutely correct in saying there is no danger. But it all comes down to what is right for you, not the other thousands of women the statistics are based on.
Best of luck to you.
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Anjolie, you are right to research this before your treatment starts. Do you know for sure that radiation is clearly needed for you? It's usually only done with mastectomy if there is node involvement, close margins, etc. Radiation was done in my case because my RO felt that the chance of local recurrence was too high, but as with all the cancer treatments, it's a numbers game. It's important to weigh the benefits with the risks.
My cancer was on the right side, so no heart concerns, but I did develop pneumonitis and fibrosis in my lung within a few months after treatment. I had a pretty large treatment area that included the supraclavicular nodes, and my RO later told me that the fibrotic changes in that area (upper area or apex of lung) were not unexpected. However, the middle portion of my lung sustained damage farther in than it was supposed to, and my RO was surprised by that. Like jesse123 said, only a tiny slice was supposed to be affected, but the pneumonitis went farther in than that. So while it is not common to have lung issues, it is certainly possible. They did present me with the long list of possible complications before I began my treatment, but I feel like they downplayed them.
With your ILD I would only have the radiation if there is clear benefit and if every precaution is taken to protect the lung, possibly through the techniques mentioned by others here. Don't be afraid to put your foot down-the decision is yours to make. You've got a lot on your plate and I truly wish you all the best in your treatment.
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Hello anjolie. You have ILD which should be of concern to any doctor you consult with when it comes to recommending medical treatment. Have you discussed your concerns with your pulmonary doc and your medical oncologist? You'd be right on target to arrange a second opinion with another Radiology Oncologist. I wish you all the best in advocating for the best treatment protocol for yourself.
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I just completed 10 out of 33 rad treatments and just this week I started experiencing fatigue...not just tired, but also apathetic--not interested in usual activities like reading. I was feeling really frustrated and then two close friends gave me good advice on the same day, independently of each other. The first person said "You need to give yourself permission to feel tired." Second person: "Embrace the need for more rest." I went to bed last night at 8pm--and I'm normally a night owl! Have not had a chance to discuss this with my RO, but I will. He seems mainly concerned about the skin SE's...never mentioned anything else. I am also taking Femara, so that may be part of it, although I started Femara about 30 days before radiation.
I keep telling myself "This too shall pass", but I'd be interested to hear from others who've experienced fatigue during radiation. Best to all of you!
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Milo - I was sooooooo tired during radiation. I had already done chemo and surgery and breezed through, but rads really took it out of me. I'm a pretty energetic person in general and I really struggled with the change. It took me a while to get my energy back afterwards too. But I'm doing well these days. Eat more protein and take as many naps as you need!
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Exercise helps. today was 9 of 30 for me. I try to walk every day
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OP here. I finished my radiation (20 treatments) the first week of December. It is now mid-January and I am back to normal. My skin looks great. Just a little darker. It actually feels smoother where it peeled. Thankfully my RO warned me that the symptoms would continue to get worse for another week after stopping radiation. That’s when the fatigue really hit me. Like I felt like I could barely sit upright. I just slept a lot on weekends and allowed myself to rest. About 2 weeks after the last treatment, I could feel myself turning a corner.
Hang in there! It will soon be over
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I hope I have that experience Had #9 today out of 30
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hapa - Did you have radiation with silicone implants?? How was that?? Any side effects with the implants??? I wasn't suppose to have radiation, so after DMX, had immediate implants. Pathology gave me a cPR to neonadj chemo. RO is now suggesting radiation just to be sure. Sitting on the fence about radiation SEs and implant.
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I had radiation 2 years after silicone implants. No problems with the implants, except of course that side now sits up a little higher & tighter.
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