Radiation April 2019
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Hi SUPer52,
Your description matches my own experience almost exactly including the swelling of the treated breast. My first treatment was April 24 and last was May 21. Like you, I was expecting for the treated breast to get smaller when in fact it has swollen up and is larger than the untreated breast. I've developed lymphedema and the swelling may be partly due to that says my PT, but she also says that "radiation is the gift that keeps on giving" and that radiation also causes swelling among all those other things you mentioned. It will probably be many more months before all its effects have calmed down. Then we'll see whether the incredibly shrinking breast that we've all been warned about actually appears.
Anne
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Thank you, Anne! That does give me a little reassurance until I am able to meet with my RO. I am concerned about lymphedema, but so far I don't have any other symptoms that would point to it, so I am hoping it is all surgery and radiation related, but, since being diagnosed with cancer has made me a little more paranoid about my health, I do have the idea that it could be the start of truncal lymphedema lurking in the back of my mind. We shall see. In the meantime, it helps to know someone else experienced similar side effects. Thanks!
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SUPer, Swelling after radiation lasted about 7 weeks, now the treated breast is definitely getting smaller than the other one. Oncologist said it may continue to shrink for 6 months to a year OM MY! Hey at least I still have 2, right?
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I completed Radiation on May 13. Wondering how others who finished around the same time are doing? I'm still getting some itching (more recently), small twinges of pain, and some swelling, especially near the armpit. And my skin is still much darker. What about you?
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Euphonius, I am also still having some swelling and some twinges of pain. Those twinges have become much less frequent, but I occasionally still get them. I actually had my first mammogram today since completing radiation and a follow up with the surgeon. He confirmed there is still some swelling that he thinks might be a mild form of breast lymphedema caused by the radiation. Some of my swelling does seem to be going up into the armpit, and I have also developed a seroma near there at the lumpectomy site. I have a consult with an le therapist next week, that I almost canceled, but I'm definitely keeping it now. Have you had any follow up appointments yet with any of your doctors since you completed radiation? I felt like I breezed through radiation relatively unscathed, so I hate thinking about the prospect that I am now having long-term complications. Ugh.
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I'm so glad this April board is still up. My hypo fractionated radiation ended I guess in early May and I was just wondering today when my breast will be normal. It still feels heavy and has those hard things in it. Also still somewhat discolored and my areola is still not well although it's better. I've seen my radiologist and surgeon since the radiation, but that was 2 months ago. Maybe it just takes a long time to heal. Does anyone know if this is normal healing. I even had a couple of shooting pains in my other breast a couple of days ago. That's never happened before and was a little concerning. I've found there are a lot of things the doctors don't tell us before surgery.
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Hi Jessie123,
I was told from the beginning that radiation can have significant side effects, some that happen right away even during treatment, mostly skin related, that quickly heal. But then there are some that may come early or later and stay a while, like swelling or hardening or shrinkage, even as long as 4-6 months or more. And then there are those that can be permanent. Radiation also aggravated lymphedema as I've found out myself. Be sure to ask your radiation oncologist or nurse to explain them to you, or to do it again. As my PT put it, radiation is the gift that keeps on giving. ☹️
Overall, I think you're supposed to give it at least 3 months or more to get some serious healing done. I finished on 5/21, saw my RO in June and will see her next on 9/19. I'll have my first post BC mammogram on 10/16, just about exactly one year to the day after the one that found the tumor.
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I was thinking about everyone and wondering how you are all doing. I finished radiation May 28th, just about 3 months ago. The zingers finally subsided a few weeks ago. My armpit, back, and shoulder are still numb from lymph removal and they only took 2 wondering if this is typical? The skin on my nipple is rough and very dry, anyone else experiencing this? Very noticeable shrinkage since radiation, Onco says this can continue up to a year after radition so wait and see where we land. I have not seen anyone since my last radiation appointment, seems strange to go months with no appointments after the whirlwind for the first few months. My 1st Onco appointment is October 1st and I believe mammogram in December, 1 year post diagnosis. Started Anastrozole June 17th, Only SES major hot flashes 100 times worse than menopause, lower back pain when I sit too long, and gained a few unneeded pounds all tolerable just a bit annoying.
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For those of us who are still experiencing some swelling rather than shrinkage (or other side effects you felt would be resolving by now), this article may be of some comfort. I have been searching for anything that will hint at the possibility that this swelling can still resolve and not become chronic lymphedema of the breast. I know this study is a little older, (2003), so while its recommendations for treatment may not be up to date, the information regarding the types of post-radiation breast complications is very informative. Swelling is mentioned several times on page 1, and on page 3 there is data showing that it did eventually resolve over a longer period of time (even several years, but that's still better than chronic lymphedema imo). My radiation oncologist had told me that radiation swelling should be resolved by now, but this article shares data regarding patients who experienced it much later after radiation ended.
For anyone experiencing some side effects that you felt should be resolved by now, such as swelling, pain, musculoskeletal issues, etc.) this may provide some information for you.
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That was an interesting article. My breast doesn't seem swollen, but it also has not gotten smaller -- it just feels different -- thick. My radiation ended May 16th and I saw the radiologist June 5th. I won't see him again until December. You both are so lucky that you have IDC --- I have ILC (doesn't show up on mammograms) so have to have a yearly MRI -- such fun. I've already had the Mammogram -- they wanted it early after radiation as a baseline because scar tissue can obscure pictures. They took a what seemed like a million pictures.
Itshandled4--- I also have upper back, neck and shoulder pain that started about 2 weeks after the end of radiation. Actually it's more like a very strong tension and it's in both shoulders - not just the surgery side. It kind of radiates around. Since it's on both sides it couldn't have come from radiation -- could it? It's a horrible feeling that I have never had before. Also, yep the skin on my nipple is the same way. I really did think things would be back to normal by now.
Piperkay --- what are the symptoms of lymphedema? I've read it can appear anywhere. Is that correct? Maybe that's what's causing my back, neck and shoulder tightness. Actually it's probably from bending over this computer researching BC for 6 months after diagnosis.
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Jessie123 - My collar bone and shoulder pain felt like pressure, when I sit up from laying down it feels tight and sore and like someone is pushing me back down. Our "new normal"? I think I did not see the radiologist after my last treatment because the center I was going to is closing. I was lucky it was 10 minutes from my house, the new one is an hour away so glad I finished before they closed.
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Hello,
I haven't started radiation yet and have seen doctor. I had done BMX and 3 nodes removed during recent surgery after chemo. Pathology Complete Response found with no cells found. I wanted to have radiation only Axillary nodes but radiation oncologist insisted Axillary nodes only radiation is not possible and it will be pointed to neck including pectoral nodes. Have you done only Axillary nodes?
Thanks
Cutie
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It's good to know where folks are in terms of swelling and pain. I had my one month follow up with the RO and the appointment with the MO. (And saw the gyno to follow up on how I'm doing on Tamoxifen). the breast surgeon is next on 9/12. I don't see the RO until next June. When I went, they said that everything looked good. And I'm sure it does, but as I mentioned, there are some lingering effects. The other one that I wondered about is that the muscles under the armpit/in the armpit always feel pulled and weaker. (I didn't have any nodes removed). Is anyone else experiencing that? It's most noticeable when lifting weights, etc.
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I finished rads at the end of July, saw the RO a month later and was dismissed by him. I have intense itching on my back above my shoulder blade. The RO told me to switch from Aquafore to baby oil. Neither one is helping. What are some of the lotions, oils you are using?
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Annie- I used Miaderm throughout my treatment and it seemed to really help hydrate my skin. You can get it through Amazon. It’s a bit pricey, but it is worth it.
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My radiation doctor recommends Udderly Smooth. It’s very inexpensive & works wonders. He likes it because there is no alchohol in the cream.one of the very few. My skin is doing very well, just a little pink, but no blisters or peeling. Actually no problems at all
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I also used Udderly Smooth during and after radiation. The nurse at the center where I had radiation gave me several different samples of moisturizers including Aquaphor, Eucerin, calendula salve, and Udderly Smooth. I liked the udderly smooth the best and that is what I used both during and after radiation. It was thick yet non-greasy and spread easily. My skin also held up very well during radiation. I did experience that itchiness after my treatments ended, so I started using the Udderly Smooth again and it helped quite a bit. What you use to clean that area also matters. I used a generic version of Cetaphil called Top Care (the gentle formula for sensitive skin) instead of soap to clean my chest and underarm area and that really seemed to help too. I'm far enough out from radiation that I've returned to using soap under my arms, but I still use the cleansing lotion on my chest and probably always will.
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Thank you all for the helpful information. I hadn't thought about the soap I was using. There's just so much to consider, isn't there?
I don't know what I would do without BC.org!!
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Annie60, my RO recommended vitamin E oil once I was done with rads. Seemed to work for me and it smelled nice too!
And as for soap, I've continued using baby body wash. Very gentle and very little scent.
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Hi Annie, my nurses gave me tube after tube of Calendula cream (Boiron brand). You can find them at most health food stores or on amazon. I loved the stuff - not the best smell in the world, but a light, cool lotion that didn't leave a greasy feel.
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SUPer52: how is your lymphedema, Is it breast lymphedema? I just had my first MO appointment after radiation and she said I have slight lymphodema of the treated breast and recommends physical therapy. I did not know you could get lymphodema of the breast, only read about the arm or leg. They only removed 2 nodes so I was surprised with this, there is not much swelling or any symptoms aside from feeling a bit heavy and some hard, dry greyish skin on the nipple which has recently started coming off with a washcloth. They treated side is actually smaller higher, and skinner than the other side since radiation. Hoping physical therapy will help?
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ItsHandled, I am still having some swelling in my breast. Thankfully, it isn't anywhere else. I did go to a PT for the swelling and for the tightness and stiffness in my shoulder. She showed me some self-massage techniques to help with lymphatic drainage, but so far they haven't done anything to help the swelling, and maybe it is my imagination, but I think it made it slightly worse. I do still have a seroma at the lumpectomy site, and the PT thought that having it drained might help the overall swelling go down. I am still debating on whether or not to have it drained though because the surgeon said that because of where my surgical site was that I am likely to "collapse" in there and have a noticeable divot. I am getting to the point, however, where I think it is time to have it drained and see if that helps the overall swelling in the breast because I am noticing that on days when the swelling is more pronounced that the skin underneath my breast looks pitted.
I am experience the opposite as you: the other, non-treated side is much smaller and skinnier, so even if I don't have the seroma drained, I'm still going to be lopsided....just in the opposite way in which I had assumed. I assumed the treated side would be smaller, and maybe it would be if it weren't for the swelling. My nipple is also a bit grayish/brownish still too, but it has gradually been lightening up.
Keep us posted on any results you see with physical therapy. Maybe my therapist isn't experienced enough with breast lymphedema as opposed to lymphedema in the arm or hand. I have found that exercises that really stretch and open up my chest muscles help a little, but nothing has made it go away for good. If I have my seroma drained, I will update as to whether that helped or not. I think I need to quite putting off making that appointment.
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SUPer52: Physical therapy appointment on Monday, I'll see what they say. As far as I can tell, I have none of the symptoms of Lymphedema but my MO said it's slight with a bit of swelling in the treated breast so I will go with she knows better than me and see what the Lymphedema specialist says. How are you doing?
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Hi. I’m about 6 months out from 33 radiation treatments. I still have a lot of chest and shoulder tightness and muscle tenderness (like I did a bunch of pushups on just one side) but no real swelling. Is anyone experiencing something similar? Thank you!
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ItsHandled, Thanks for your update! I am still hanging in there; my swelling has pretty much remained status quo. I see my MO in December, and given that she is my only female doctor, I am thinking I may have more luck with her as far as recommendations for treatment. I'd be willing to try the therapy with a lymphedema specialist again, but I wasn't happy with the one I went to and there aren't many where I live. I go out of town to see my doctors, however, so maybe there is someone affiliated with their hospital that I would have better luck with. I did see the nurse in my surgeon's office last week for something else, and she thought that my swelling, while evident, was minimal and still within the norms following radiation, but I'll see what my MO says. Hopefully your physical therapy appointment goes well! I'll be looking forward to any updates you are willing to share afterwards. I have heard so many positive things from others about the physical therapy helping with the swelling and breast lymphedema, so I think my experience was just an unfortunate one.
Garnersuz, I still get some tightness, and I have read posts from others who have said the same thing. While my physical therapy didn't help my swelling, it really did help with regaining my range of motion, which continues to improve. Some days, everything feels a little tighter, but if I start out with my range of motion exercises slowly and gently, I find that I am able to gradually increase that range and loosen things up. The stretches that help the most are ones that open up my chest/pectoral muscles. Depending on laws where you live, you may be able to have physical therapy even without a doctor's referral, but it is likely that any of your doctors would refer you to help regain your flexibility in those areas.
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SUPer52: So I saw the Lymphedema Specialist and she looked perplexed as to why I was referred for PT for Lymphedema as she did not think this is what I have, although the pores were still a litlle large there is no swelling, redness, or pain. She just recommended I give her a call if I get any symptoms and recommended light massage with the fingertips which she showed me how to do. The tightness in my shoulder and collar bone have subsided so I am going to go with no Lymhedema and hope I don't ever get it. Hope you get to the bottom of your swelling issues, so awful you have to go out of town for treatments
I see you started Anastrozole around the same time as me, how are you doing with it? I had crazy hot flashes the 1st 4 months but they seem to be happening less often and not as intense, my hips get stiff after sitting for too long but luckily get better once I get up and move around.
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ItsHandled, It does look like our entire treatment plans happened around the same time. My therapist wasn't willing to call my swelling lymphedema either. I took that as maybe she was not as familiar with breast LE, but maybe you and I are lucky and we aren't cursed with LE. I had myself convinced that by now, any post-radiation swelling should have resolved, but the nurse last week reminded me everyone is different and assured me that what she saw when she looked at me was still well within normal radiation recovery. She has been a nurse in the breast cancer center for at least 30 years, so I am putting faith in her experience, knowing she's likely to have seen all kinds of side effects. So, here's to hoping! You mentioned that your pores seem larger. Mine did also for a while, but they are starting to look better. My surgeon had said there was some slight skin thickening from the radiation (and probably from the swelling too) which can cause that. I started using cream again just as I did during radiation, and it seems to have helped the skin regain a normal appearance. I never did get much reaction in terms of redness or peeling, but my pores enlarged and stretch marks seemed to become more noticeable. That is all improving though, now that I have become diligent once again with using cream.
So far, I have been doing okay with the Anastrozole. I have just recently noticed that some of my hot flashes are a little worse, but they are still nothing like the terrible ones I had when I went through menopause relatively early at the age of 40. I was very worried about joint pain, but so far I haven't noticed anything there either. I have a bad knee and had surgery on it right before I received my diagnosis, and while it does still give me some trouble every now and then, it isn't any worse than before I started anastrozole. Yesterday, I had my annual pap smear and I will say it actually hurt. A lot! I mentioned it to my doctor and he said it was most likely from the lack of estrogen. So....not looking forward to that again next year lol! That's good that you find some relief in your hips once you get up and get moving!
Thank you again for the update and hugs to you too!
I'm hoping that all of us April radiation warriors keep popping in from time to time! Hope everyone is doing well!
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Here's another April radiation warrior popping in! I have now seen my surgeon, MO, RO, OB/GYN, and lymphemdema specialist PT now at least twice since the end of radiation in mid-May, and I've had my first post-diagnosis mammogram (which was clear, yay!, and not as painful as I expected it to be). Each has given me another follow-up appointment except the LE PT: Surgeon in 6 months, MO in 4 months, RO in 6 months, OB/GYN annual, and none from the LE PT because my LE appears to be stable at this time. I'm to call her if I think I need something, but I have no further scheduled appointments. I have not seen my PCP since this whole thing began last year, so I'm not sure whether he'd be a good team leader or not. He probably doesn't even know this happened. But as of now, my next scheduled BC related appt is in February. And no one has mentioned MRI or ultrasound at all.
As to radiation side effects, the RO commented on some remaining swelling when I was 4 months out, but didn't express any concern about that. She was just pointing it out to her resident. The breast itself feels firmer and larger than before and when compared to the untreated breast, it is much fuller. Standing in front of the mirror, my "headlights" point in somewhat different directions. That effect is minimized when I'm wearing a bra, but it's disappointing because my breasts were always pretty equal in size and shape and droop (lol!).
My range of motion is pretty good, though it's better if I do some stretching in the morning and throughout the day. GarnerSuz77, I like your description of doing a bunch of pushups on that one side. It's exactly how I feel sometimes. Not that I've ever done a bunch of pushups even with both sides, but you know what I mean.
Hope you're all feeling better and better, and Happy Halloween!
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PiperKay, Yeah for a clear mammogram! My 1st one post everything will be in December. 1st time I will be nervous getting a mammogram, glad to hear it was not as painful as you thought it would be. No follow up appointments ever scheduled with Surgeon or RO, saw MO once and follow up will be in 6 months. Never saw PCP through the entire process but saw her last week for allergic reaction to a flu shot, that was no fun! My 2nd flu shot ever so not sure I will do that again.
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1st Mammogram since diagnosis was today, I am not gonna lie I was anxious. It was much more painful than before maybe because I was so tense, LOL. They said results in a few days but I saw my primary care doctor right after and she looked it up and said everything looks great, Whew!
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