Intense chest & back pain AFTER radiation?

pinkygirl

I would greatly appreciate any advice regarding the following symptoms that I am experiencing after finishing radiation (35 treatments plus a few extra days of boost treatment) over a month ago. FYI, I also had 4 cycles of AC chemo and a lumpectomy, but I really think my symptoms are related to the radiation. 

In sum, my symptoms are as follows:  

1.  Pain, sometimes sharp and stabbing, sometimes dull and achey, in various spots within (or close to) the radiation field: under my left breast, under my left shoulder blade, in the center of my chest just below my esophagus, once in my esophagus, and in both sides of my jaw.

2.  The pain is worst when I lie down, breathe deeply, or bend/stoop.

3.  I cannot physically lie down (either on my back or either side) without unbearable pain, so I sleep sitting up.

4. A few episodes of intense nausea - perhaps due to the pain?

5. Every once in a while I get a low grade fever (99.9 - 100.6)    

This has been going on for over 2 weeks now and has resulted in 3 trips to the ER; they admitted me into the hospital for 2 days after the last ER visit. Unfortunately, my problem has not yet been resolved.

Everything has been checked out and seems "normal" - EKG, CT scan, ECHO, chest xrays, bloodwork.  Thus, they have ruled out pulmonary embolism, heart attack, cracked rib, pneumonia, etc.

Everyone seems to think that nothing but the radiation could be causing this pain.  The thought is that there may have been damage to my chest wall. My radiation onc thinks it may be costochondritis.

Right now, I am taking 600 mg of Motrin every 6 hours, Lortab as needed, and 1 Zantac a day. I get to see my radiation onc and my medical onc tomorrow and am hoping to get some answers.

 Thanks in advance for any thoughts/stories/help you can provide. I'm desperate for some answers! 

apple

i am 3 months post radiation... and 8 months post surgery.

i have rib pain on the side of radiation and my mastectomy.. the onc says it is fairly normal and may go on for sometime.  I especially feel it upon awakening.  Still, she will examine the area carefully with my next scan (which is not scheduled any sooner).

i worry about it too.

Thanks for keeping us (me) posted.  I am curious to know what they say.

Shirlann

One thing a lot of us get AFTER rads is Costochondritis, or, inflammation of the meat between the ribs.  After reading your post, though, you may have a little lung involvement.  Just be sure the rad onc is FULLY aware of all this.  This is a little more  than one would normally expect.

Scream loud and hard and if they don't listen, go to the clinic, fall on the floor and moan softly that they are "trying to kill me".  Have a co-hort with you to film this for the 6pm news, and I think you will get attention.  Don't be the good little girl who never makes any waves, the way we were all brought up.

Hugs, Shirlann

NancySchoen

Pinky girl... I had a similar pain although not in the jaw. I had an endoscopy and had a yeast infection in my esophagus. It caused a lot of very sharp pain. However, I also had some difficulty swallowing. I sure hope they can find out what your pain is as it does become debilitating after awhile. Nancy

pinkygirl

Just a quick thank you for taking the time to reply to my post!  I've never posted here before and reading your words brought me tremendous comfort (and a huge laugh, thanks Shirlann!).  I will post again after my doctors' appointments today - which I am eagerly awaiting after a sleepless night...

pinkygirl

UPDATE: 

In sum, my oncologists are convinced I am dealing with a radiation-induced inflammation of the lining of my lungs, heart, or a little of both (so either radiation pleuritis, pericarditis, or pleuropericarditis). I started Prednisone (steroids) tonight (the strongest anti-inflammatory medicine available - replacing the Motrin I've been on) which I'll try for a week to see if it works - if yes, I'll be on these for about 4 weeks.  Steroids have some pretty yucky side effects, but I'm at the point where I'll do just about anything to get rid of this pain.  FYI - still on the acid reducer once a day. 

They are also getting me in this week to see a cardiologist who specializes in these issues, and I'm seeing my medical onc again next Tuesday to see how the steroids are working. She seems to think that within 2-3 days, I may be feeling quite noticeably better - in fact, she said that the steroids will make me super-hyper and "eager to get back to work"  )  Also got a prescription for a sleeping aide and slept for 7 hours last night (as compared to 45 minutes the last 2 nights) - YAY!!!

Thanks again Shirlann for giving me that boost I needed to be strong with my docs.  My radiation onc did not seem to really be "invested" in getting this resolved once and for all - he said that pericarditis is so extremely rare and my tests did not indicate that I had it. My medical onc "got it"  though. She spent an hour with us, really heard me, and that made all the difference in the world. She said that she knows this kind of inflammation can hurt like hell.She said that the tests would not reveal one of these "itises" so early on. 

At any rate, I'm hopeful, but trying not to get too excited that we have the final answer here.  Will update again for anyone who may be interested! 

Shirlann

Honey, you sound like you are intelligent, and pro-active.  And that is such good news.  You should recover from these things, but I am sorry that you have to have this additional grief.  Not fair.

You do have to be your own advocate, the days of waiting around for the medical profession to truly "Take care of us" are over.  It's not all their fault, but whatever the cause, if you feel you are not getting what you need, go elsewhere and just be the sqeaky wheel.

Gentle hugs, Shirlann

pinkygirl

Thanks so much for taking the time to post Shirlann - your words bring a smile to my face!

nelia48

I'm so glad I read all of this thread this morning.  Maybe I ought to call and go back in to get checked.  The past few days, I've had that stabbing pain in my chest, especially in the evenings.  Feels like a hot knife going through from the front to the shoulder blade.  Sometimes hard to breathe because of it.  I finished my radiation treatments on Wednesday.  I know things are a little delayed so was going to wait until Monday to see how I feel.  I HATE it when a weekend is coming and you wonder if you should call or not on Friday.  I don't want the ER thing!

pinkygirl

I say "go for it" Nelia - I've been on Prednisone for 5 days, and I truly do feel noticably better (not to mention, I have beyond boundless energy!!).  The pain is not completely gone, but it is very manageable. I can actually lie down at night.  I find it easiest to lie on my back and put one pillow directly under my chest area and then two pillows below my head for support.

FYI, I still wake up with stabbing pain in my back (and a little in my jaw), but I just walk around a bit, ice it down for 30 minutes, and then take my medicine, and I'm feeling great in no time.  Makes me think that this is chest wall-related after all. We'll see though - I see my medical oncologist for a follow up appointment on Tuesday, and I also see a cardiologist that morning. 

 If I learn anything new i promise to post.  I sure hope you start feeling better soon Nelia!  But please don't chance it. If you have chest pain/pressure, combined with difficulty breathing, you don't want to take any chances.  We're all at increased risk for blood clots now, and you must rule out the "scary stuff" before anything else ) 

Take care

catcrazy

I finished radiation one year ago for right breast cancer and have been having point tenderness shoulder pain and severe  pain under the right breast and in my back between my ribs on the right side.  Had a bone scan and it is normal. I am now having PT to try to reduce the pain in my shoulder.  The pain which they say is costochondritis is very painful.  I want to just scream to make my oncologist understand my pain,  I have trouble even using my right arm.  I am glad I found this website with the forums.  I was starting to think I was crazy or that the tamoxifen was making me nuts!!! 

pinkygirl

Here's a little update for anyone who may be interested - hope this helps you catcrazy, and I am sorry you are dealin with this pain (fyi - you are not going crazy - my radiation oncologist apparently told my medical oncologist last week that he thought I was "just stressed out" - geesh!!!)

I met with a cardiologist this morning, and he has diagnosed me with pericarditis.  He said that this is a very uncommon side effect, but after taking my medical history and then listening to my chest, he said that it was a "text-book" case of pericarditis.  When he listened to my heart, he heard a "rubbing sound" that he said is the tell-tale sign of pericarditis. He also said that tests such as the Echo (sp?), CT, very often do not show when someone has pericarditis.

He has instructed me to stay on the Prednisone, which we'll taper-off in a few weeks, and he instructed me to go back to taking 600 mg of Motrin 3 times a day for the pain, provided that I am taking the Nexium twice daily. He said that if the Motrin is not working within a week, he can prescribe another drug called colchacine (sp?).

As for me, the steroids are definitely helping. My pain is still in all the same places (under left breast, left shoulder, under left shoulder blade, in my jaw, and sometimes in the center of my chest and neck) at all the same times (whenever I breathe deeply, cough/sneeze/laugh, lie down), but on a pain scale of 1-10, I'm now at a 3-4 as compared to last week when it was a 7-9.  I do not have the intense, sharp stabbing pains anymore, but just a pretty strong, achy kind of pain.  The only really "new" thing is that I have more shortness of breath (or I'm just noticing it more). The shortness of breath starts immediately when I wake up and tends to get better as the days goes on.  I am short of breath whether I am sitting down, doing nothing at all, or walking around.

FYI - my cardiologist was pretty peeved that I had not been sent to see a cardiologist earlier.  He said that pericarditis is very hard to diagnose, but still, he was disappointed that so many doctors did not get this right.

Good news is, this will go away within a few weeks, leaving me with no permanent damage to my heart.

Very good doctor day today  ) 

pinkygirl

FYI update to any interested folks out there!  The steroids are absolutely working their madic. I felt almost back to 100% within a week. Started at 50 mg of Prednisone and then tapered to 25 after a few weeks, then 20 the following week. Unfortunately, after being on 20 mg for one day, I woke up the next morning with the stabbing pain in my left shoulder/back again and the pain in my chest when breathing.  Called my medical oncologist and she said to go back to 50 for 2 days then down to 30 - that the inflammation had not yet gone away.  Worked like a charm. Not sure how long I'll be on steroids, but for now I am enjoying all the extra energy. This experience has changed my life in ways that even BC didn't!  I truly am a different person than I was a few months ago - pretty amazing  )

Lisa0614

Hi Just wanted to say Thank You. I am at the end of my radiation.  About a week ago I started having alot of pain in my back and chest I did speak to my Radiologist and he explained about the inflammation in the ribs and my shoulder. With that being said I was still concerned and just knowing you aren't alone and their are other people going thru the same thing as you are. Makes you feel better and that there is answers to your questions.Shirlann's great advise and humor was icing on the cake Take Care..Lisa

pinkygirl

Lisa, I sure hope they get to the bottom of what is causing your pain. I'm quite certain you've been through enough already!  I agree, it really is so helpful to have these boards and just know that there are others out there who are dealing with similar issues. I'm still on the steroids (down to 15 mg total a day) - but every time we try to taper down lower than this amount, the pain comes back.  The cardiologist and my onc say this is to be expected (and that is could take months) so I'm just going with the flow for now.  Take care!!

LeggyJ

Hey Pinkygirl, I was beginning to think I was the only 1/2 nodes, girl out there. 

Lisa0614

Hi

I finally was able to get an  answer to all my aches and pains and it is Pericarditis. They put  me in the hospital and ran all the test...It was very frustrating for the Doctors and I couldn't get a direct answer. The nurses on the Oncology floor were so supportive and full of information and helpful hints. My onc wasn't on call over the weekend so I was blessed with his partner LOL he kept asking me what I thought it could be!  I am always amazed when someone becomes a Dr and they have no people skills at all!  I am on Prednisone and am slowly tapering off of it.It has been a little over a week now and I am staring to feel better. The mornings  are the best  but by early afternoon I can start feeling the tightness in my chest and breathing is more labored. The good news is this will pass soon enough...Thanks for listening. Take Care LIsa

BarbaraA

So glad to have found this thread. Had Tx 4 of 16 today. Had 1&2 last Thur and Fri and over the weekend developed a dry cough which is still with me. After tx today, my left lung feels very heavy and I have trouble breathing deeply. Called Radonc (who is on vacation) and they feel I just have a cold. Right. In FL in June. I haven't had a cold in three years and I know what they feel like in my body. So, she said if I have more trouble breathing head to the ER. I told her OK but I would stop by after my tx and see if she can get me to see another doc.

Not liking this.

BarbaraA

So glad to have found this thread. Had Tx 4 of 16 today. Had 1&2 last Thur and Fri and over the weekend developed a dry cough which is still with me. After tx today, my left lung feels very heavy and I have trouble breathing deeply. Called Radonc (who is on vacation) and they feel I just have a cold. Right. In FL in June. I haven't had a cold in three years and I know what they feel like in my body. So, she said if I have more trouble breathing head to the ER. I told her OK but I would stop by after my tx and see if she can get me to see another doc.

Not liking this.

3monstmama

Hi all,

I was diagnoised with radiation pneumonitis post zaps.  I actually sailed through zaps--or so I thought--until I got hit by some serious shortness of breath.  I felt like a gasping goldfish without any water [probably looked like one too, at least sometimes when I was taking deep breathes].  anyrate, my oncologist is very good and she listened and sent me for another CAT scan, a pulmonary function test and to see a pulmonary specialist.  He took one look at the CAT sacan and called it. At this point, it is mild and seems to be getting better on its own so they are not giving me steriods.  I am tired but I can breathe and the oxygen test shows I am getting enough oxygen etc.  I do think it is interesting that my function tests can be very good even though I definitely have this problem.

What has helped, much as I hate it, is going back to taking it easy:  going to bed early, getting lots of sleep, taking one hour off from my work schedule.  GOD I HATE THIS.....I mean you look at me and it doesn't look like anything is wrong but I feel so wiped out.  Yesterday, I did about 1.5 miles on my bike and walked 1/2 mile [downhill] and I was exhausted and overslept my alarm. 

My understanding is that radiation pneumonitis does show on xrays, not just CAT scans.  I had a CAT scan because there is something else they are watching with me.

 good luck to all. 

BarbaraA

I think I need a chest xray. This is really bad. Hard to catch my breath. Tomorrow I will put my foot down. WIll update the thread after.

kira66715

Barbara, maybe you should go to the ER--it doesn't sound good that you are so short of breath, and waiting until tomorrow may delay getting you the care you need.

I work in rad onc, and one thing I appreciate about the head rad onc is that he assumes control of the patients when they're on therapy--we treat anything that comes up. I spoke to my oncologist at Dana Farber and he said that the rad onc's there won't evaluate a sneeze...

I think this should be checked out sooner than later, it sounds like you're so uncomfortable.

Kira

3monstmama

Barbara,

Its a hard thing to sort out.  During treatment we are more susceptible to colds and crap but at the same time, some things can be something else and there's no real way to know without scans which mean MORE stupidradiation which is not something we want unnecessarily.  Catch 22, isn't it?  At some point post zaps I did have a cold but then it turned out to be something more. Or I got it because of the zaps.  Or or or.  In the end it doesn't matter as long as you get better.

What you describe sounds like what I was experiencing---simply could not catch my breath and always felt like I was taking a break from a marathon. For sleeping at night, it was MUCH easier when I stuck a couple of pillows behind---so not completely inclined.

hang in there.  Hope your appointment goes well tomorrow.

BarbaraA

OK, had tx 7 of 16. Shortness of breath goes away until maybe 3 hours after tx. They swear it isn't rads. Plus they said only 5% of folks get it at all and it happens after rads are done. All I can say is the only thing different w/me is rads so go figure. Have been drinking ginger tea and that seems to help with the imflammation/tightness of the lung. No xray unless absolutely necessary.