You guys have been through and are still going through hell with radiation. I'm one of the blessed ones - at least for now. I had minor burning and fatigue that's it. I do know however, that lung scarring among other things, can show up years later.

I recently went to a clinic for minor back pain. The PA said one of my lungs was not totally clear so she ordered a chest X-ray. Blood test showed negative for pneumonia. Chest X-ray showed lung nodules everywhere even in the clearer lung area which is in the area where my BC was and radiation administered. 33 treatments. She said it could be scar tissue but didn't know of course. She wanted me to go immediately to the cancer clinic because they had my records. I said I would wait for the radiologist's report. She didn't like that and said the Radiologist would agree with her. She sent the X-rays to the Radiologist who said the chest X-ray was normal and no evidence of any lung issues.

My internist didn't seem concerned. I fully expect lung scarring from the radiation. Btw that's the only thing the RO shared with me as far as risks. I was told they were doing a better job of radiated only targeted areas.

None of you deserve what has happened to you as a result of radiation. It should have been your choice of course but based on all the information made available to you and then you decide. I bet a lot of women would have opted out if they had known.

Diane

I posted this in the Femara thread regarding the importance for putting your profile public ESP FOR NEWBIES!

I have no idea how people think they will be found out by filling out their profiles with a user name of "fish" for example leaving out location. So that doesn't fly with me. They are being disingenuous and if giving advice, unethical. Newbies do not know age matter, stage matters, ER, Her 2, etc. I know I didn't. But someone here told me to look at profile when taking in any advice. It sounds so logical but when you are a newbie, you are reading typically the negative posts like se's and not paying attention to any of us who didn't have such a bad time whether on chemo, rads or meds. I would love for someone who refuses to put their profile up to explain to me how they may be found out if they post like what I said above. I'm waiting......

Thanks mac - no issues with breathing thankfully. Allergies are brutal though and nothing seems to help except Benadryl. Constant sneezing and watery eyes. Internist told me to start wearing a mask when I mow the lawn. I exercise in some fashion every day.

Diane

My heart goes out to you. I am so sorry you have suffered these traumatizing effects. Couldn't they have stopped at 18 or 20?? Surely the damage was evident then. This breaks my heart.

Michele

Macb04, I only had 16 radiation treatments, but I think I'm toast. It seemed to really irritate the lymph system, which settled down a few weeks after rads. But now? Things are getting bad and I think I have lymphedema in my arm, armpit, shoulder blade, breast, side and ribs below my breast. I cannot lay on my side at night, it feels like I'm laying on a rope! Hub can't rest his arm across my side, it hurts! My rings leave dents in my fingers and that never happened before. And my bra band bites me. I wake up in the morning feeling swollen and it only gets worse as the day goes on and it hurts! Not, oh my god I'm going to die, hurt. But just a steady, dull ache that worsens as the day goes on. It's hard to be normal and active when I worry that everything I do (raking, digging, splitting firewood, shovelling) is going to flare it up.

Add to that the joys of tamoxifen ( leg cramps, hair loss, hot flashes, night sweats, vaginal mud bog, oh and a bladder that seems to have lost all elasticity and now I'm a dripper, god forbid I sneeze!) And people ask me how I am. I don't even think that's the right question anymore. Not HOW I am, but WHAT I am. I am what's leftover after you've been terrified, poked, injected, cut open, sewed up, x-rayed 15 different times, radiated and hormone blocked. Do I look fine? WELL I'M NOT! I'm freaked out and nothing is the same anymore and it hurts to move my arm and feels like I walk around with a rolling pin lodged in my armpit, pinched, to keep it in place. Only it's swelling.

And then there's this damn cough! The rad onc said my lung is ' crackling'. You mean as in roasted?

Somedays I try to get my big girl panties in order and get on with life. Other days I just want to fall in a heap and cry because ... all this for continued uncertainty and fear about the future? I got off easier than many. I did not have chemo. But the terror train that we all board when we get the phone call saying " There is something on your mammogram that we want to look at again.." No one gets past that without being changed forever. This is just nasty shit.

Runor, what you are describing sounds so similar to what happened to me... I noticed the same symptoms about five weeks after completing radiation. My surgeon said that I have lymphedema of my breast but no one wants to address the arm issue which, as you describe, is worse during the day and better during the night (could gravity being playing a role here?). A member of this community had recommended that I check out this website:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Also, There is a lot of useful information in the Lymphedema Forum

https://community.breastcancer.org/forum/64

I believe that it's easier to manage if you address this sooner than later.

I think I’ll investigate it too, mac

Runor, I noticed you said you wouldn’t go to LEPT twice a week. I just want to point out that doing MLD yourself is not as efficient as someone experienced with lymphedema massage and the therapist has two hands to work on you, you would really only be able to use one of yours. It’s important to get the swelling down and the toxins moving out before the tissues get damaged and make things worse. I only went once a week and I was better each time. Mine was pretty bad. It tooka total of 15 visits to get it almost back to normal. That was over several months. Is there a reason you can’t do that? Insurance or work? Just trying to help you.

Hi Marijen! I don't think my lymphedemon is as bad as yours (my new word for it, cause it's evil). Looking around on that website and learning more exercise and massage techniques do seem to have helped. I am also finally noticing a pattern of what makes it better and worse. Moving is better. Concussive force, like chopping wood, is worse. I can do hard work, just not hard jarring work. Sitting and crocheting or computering, anything that keeps my arm still and at my side, is worse.

KB870 is right, I live up a mountain and getting to town in winter conditions is dicey. I only know of one lymphedemon therapist and KB870 was right again that the wait list to get in is months. There is likely no way I would ever be considered for weekly treatments considering that my situation would not be considered as acute as others.

Having said that, I am a little concerned about the constant pain I'm in. Not oh-my-god pain, but just an annoying ache, mostly in my armpit. It is puffy under there. And sore and yucky. So my knowledge of what worsens and improves this, how to manage it is getting better, I think. But it seems in the last couple weeks the lymphedemon itself has gotten worse.

I am not against going to see a specialist but know with our Canadian system, and being rural and remote, NOTHING happens fast. Nothing.