Topic: Radiation-Induced Pleurisy?

Jul 20, 2008 10:31PM noella58 wrote:

Jul 22, 2008 09:58AM noella58 wrote:

To Annac,

My symptoms started around the second week of radiation but seem to be getting worse.My regular MD got the referal to the pulmonologist because the radiation MD essentially blew me off.I.m so weak now I can't function at all and my husband is taking me back to our regular doctor today, We plan on   suggesting to him that this might not be asthma at all and maybe we need to try the prednisone even before I get to see the pulmonologist.What I really don't like about this whole thing is that before the radiation we questioned the radiation oncologist as to what side effects we could expect and he said the only thing would be a little "skin irritation".Well surprise,surprise radiation seems to be able to cause a lot more problems than just a little "skin irritation"! 

Aug 15, 2008 12:15PM - edited Aug 15, 2008 12:19PM by kathy43

I am so glad that it's not just me, thank you all for posting.  I had a similar problem with my radiation oncologist, when I went back to him for my followup appointment after the radiation I tried to describe my symptoms and he sent me for a gastroscopy which came back normal.  Within a few weeks I also went to Emergency because of breathing problems and chest pains, not as severe as yours but still very worrying.  They told me I had pleurisy and said I should take NSAID's (ibuprofen).  My CT scan, EKG and chest x-ray also showed up normal.  That was about 3 months ago.  I've been taking the NSAID's, taking it easy, and while progress has been very slow, there has been some improvement. 

 I just saw my radiation oncologist this week for another followup appointment and he disputed the pleurisy diagnosis.  They seem to really downplay the effects of radiation.  It does affect everyone differently and because this is probably fairly rare, they seem to think it doesn't exist which is very upsetting.  Anyway he is sending me to a respirologist.  I don't know what he will say, but from reading all the posts it seems that NSAID's or steroids are the likely treatments.

My symptoms are different from yours in that I am more comfortable lying down or leaning back.  I find I can then breathe with my diaphragm and not expand my chest, which is what really hurts. It also hurts when I lean forward, I probably have damage in a slightly different area. 

Thanks so much for the information, it is very upsetting when you're made to feel that your symptoms aren't real.  My radiation treatments finished over six months ago, so far I still have a very real problem, but it does seem to be improving.  Good luck everyone.

Aug 15, 2008 05:18PM Shirlann wrote:

So what else is new?  Radiologists and all their staff deny EVERYTHING!!!!!

Costochondritis, osteo-necrosis, etc., etc., etc.,

Just the way they do it.

They even denied the fatigue, for years.  They insisted it was all mental, from the stress, I wondered, "Didn't these idiots ever read about radiation sickness?"  Morons.

Ah darn, breast cancer, the gift that keeps on giving.

Hugs, shirlann 

Aug 15, 2008 11:50PM srb wrote:

OMG-ANNAC-

I could have written your discussion.  I had the EXACT same thing.  Felt like I was having a heart attack after a chest tightening for a couple of days around number 10 radiation.   Went to the ER and everything checked out fine.  They said perhaps pleurisy.  This is the conclusion I came to.  I am not a doctor so who knows but...I had axillary lymph nodes removed twice and as a result I have had a very taut muscle that stuck out about an inch from the armpit.  As I lay with my arm up for radiation it stretches that muscle more than I have in 6 months.  Since my ER trip I noticed that muscle does not stick out at all anymore and my armpit feels back to normal.  My thoughts are that there was some time of muscle pull post surgery that finally found it's way back to normal and it was a muscle strain that was causing me to lose my breath and feel as though I was having a heart attack.  Any thoughts anyone else?

SRB 

Apr 15, 2009 12:08PM - edited Apr 16, 2009 09:20PM by pinkygirl

Was super-excited to see these posts. If anyone is still checking this, please see my post (and update, below) from a few days ago with a similar story:

MY ORIGINAL POST:

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! 

Dx 8/29/2008, IDC, <1cm, Stage Ia, Grade 3, 2/1 nodes, ER+/PR-, HER2-

UPDATE POST:

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"  :o)  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! 

May 16, 2009 05:18PM Carmelle wrote:

Pinkygirl,

I had those EXACT symptoms and it was sever radiation pneumonitis. Caught it by a respirologist who was my attending Onc. Needed high dosage of steroids over 4 months to clear up. 

Jul 14, 2009 02:12PM Transitions23 wrote:

Oh my-  I'm reading these posts and am amazed that I am not the only one going through this. Here's a very long experience fo mine.  I aplogize for the length, but if it can help someone...that's what I intend to do.

My first problem started after my 5th treatment I woke up at 2:30 in the morning  with stabbling chest pains, traveling to my left shoulder and under my shoulder blade.  It hurt to breathe in, so my breathing became very shallow. Yawning was terrible, burping or a hiccup.  I called my raidiologist and they said that I would have to follow up with a family physician.  I called a family physician and they refused to see me because of the chest pains and told me to call 911.  So the ambulance takes me to the hospital.

CT Scan and XRays were clear, so I was admitted for evaluaiton and further testing.  On the coronary floor there was a lot of blood work.  The corisil test for the adremal gland showed a slow response but they said the range was nothing to be alarmed about and I had low potassium..  The did an endoscopy (SP?) for the upper GI and that was fine. I was given potassium, blood thinners, anti-inflammatory meds and pain killers intraveniously. The hospital doctors seemed to feel it was radiation induced, but not my radiologist.  I felt like I was stuck in the middle-still with no answer to my problem.  I was released without a diagnoses and continued my radiation. 

The radiologists completely denied that this could be a product of the radiation..leaving me to feel helpless and fairly stupid. She said that in her 18 years she had never seen radation do this to anyone and I appreciate that...but, it's happening to me and strangely I felt like I had to apologize to her for not being the best patient.  I did apologize.  Then I became confused over what to think. 

It then happened to me again after my 25th treatment.  It woke me up at 6:30 am. .  Movement, laying, bending over, picking my legs up and even sitting was too uncomfortable.  It seemed anything that put pressure to my midsection put me into a lot of pain.  The kind of pain you can't deal with or manage on your own.  So, another trip to the hospital.  The same things happened.  I was admitted for evaluation and a few more test.  The hopital doctors in the emergency room again stated they thought it was related to the radiation.  Again, the radiologist did not believe this was possible.  So, I left the hopital on Monday with a prescription of 800 mg Ibuprofen for the inflamation, Omeprazole to keep the Ibuprofen from irritating the stomach and a pain killer, and a pain killer if the pain got too bad. Still no diagnosis though.

 I followed up with a family doctor as I was told to.  They took a chest XRay and he said the left upper lobe appeared pleuretic.  I was shocked to hear that because I had already taken numerous chest XRays and two CT scans, and no one said they showed anything. I was prescribed Carisoprodol, a muscle relaxant for pain. I went home.  

I started gathering myself together for going back to work.  All of the sudden, it happens again on July 10th while I'm visiting my daughter & sister in NC.  It started as bearable but eventually intensified. I drove home popping the Ibuprofen. It kept the edge off for a while, but the pain never went away.  I couldn't bend over at all without immense pain.  This time the pain traveled into my shoulders-mostly the left one, the back of my neck and my jaws.    I was sleeping propped up on pillows because when I lay flat, it hurt and I couldn't breathe.  I felt like there was no room to breathe.  But I tried to manage the pain myself with the Ibuprofen and stomach meds. When I got home on the 12th, I felt pretty rough.  So I tried one of the carisoprodols that the family physician had described.  At this point the Ibuprofen wasn't cutting it anymore and I was taking them too often.  I got up and washed dishes until the medicine took effect. It felt better to stand up than anything. But, it never gave relief, so I took another Ibuprofen. I propped myself up to sleep-not so great of sleep.  On the thirteenth I woke up and the rest of the day was a struggle.  It got too bad to cope and I was standing on my toes now.  So, I called the oncologist and she said I should go to the ER because she didn't think it was anything "We" have done to you.  I was shocked to hear that statement because I never pointed fingers at anyone or a facility...just the radiation.  And that was based on other doctor's opinions.  So again, no answers and I head to the ER. 

Then I met one of the the best doctors in the world.  Anyone could hope to have one like him.  He listened with care and then he explained different things I could be dealing with.  What he DID NOT do is tell my I wasn't dealing with anything. Bless him. He then proceeded to look over all of my other tests and do a few more through blood work at the hospital. He returned and told me I had symptoms of pleurisy and he thought that it was a result of the radiation and he understands that the radiology department doesn't want to except this information, but from his total assessment, this is the result of radiation. Other tests already done had ruled out other possiblities. Then he explained where the pain came from and how it all worked.  He also said if I didn't get this damaged lobed opened up by expanding the lung with deep breathing, worse case scenario, is that I could end up with pneumonia and could lose that lung.  Thank GOD for this man.  He explained and made sense like I'd never had.  He said it could take up to a year or longer for this to fully heal, but that depends on the person as an individual.  He also set me up with a stress test, which is something I've wanted done because of the radiation to the heart as well.  I'm out of breath when I walk and that doesn't make sense to me.  I love to walk and jog and miss this so much.  

I hope this has helped someone.  If these things are happening to you..print these out and show them to you onco or radiologist.  If they've never seen these symptoms before, then remind them they've never had you as a patient before.  They say they treat us as individuals when treating cancer, because our cancers aren't the same and don't always act or respond the same.  This theory should be used as theory with radiation patients too.   I have no clue why any radiologist would be afraid to assume that this is happening.  Makes no sense!  Good luck to all of you through your journeys.

Jul 15, 2009 10:16AM Mary22 wrote:

Oops, I forgot to thank Transition23 for sharing her story, since I already have asthma it is something to discuss w/my docs. That feels so strange to say docs. I use to only have 2 and only see them each once a year. Gyno ofr obvious reasons and PC for annual sinus infection and new RX's for asthma. Now I have Rads onc, med onc, breast surgeon, genetic counselor,gyno, gyno surgeon,and PC, this is something I am not use to.

Jun 18, 2010 09:52PM blueballoon wrote:

Reading this discussion thread has been a ray of hope for me!  I'm not the only one! Right after I finished radiation to the left breast (23 days whole breast + 7 days boost), my breathing was labored, I felt a lot of pressure on my heart, and my BP shot way up.  I went to the cardiologist, did an echo, and he said, "Your heart is fine."  Without ever looking at the radiation graphs, he said, "You weren't radiated through your heart. It's just stress."  I had seen the radiation graphs, and I KNEW the heart and lungs HAD been hit. I was taking 800mg to 1200 mg of ibuprofen a day, and it wasn't doing the trick.  Finally, I went to the ER, did an EKG, chest x-ray and blood work, and was told again, "It's probably stress."  My next door neighbor is a good friend who knows me well -- and also happens to be a psychiatrist -- and she agreed with me, "It's not stress."  I suffered for a month, and then finally went to the radiation oncologist for my one-month follow-up appt. I told her very calmly (well rehearsed) that my ribs hurt a lot and I had been experiencing a lot of pressure on my heart and lungs.  When I said the words, "Emergency Room," she suddenly had fear on her face, then basically WALKED OUT OF THE ROOM.  It was unbelievable.  It was more important for her to cover her rearend for fear of a lawsuit than to discuss the problem with me and find a solution.  I'm now one and half months out from my last radiation and I'm feeling slightly better, but I'm not normal by any means.  I am so disillusioned with the doctors.  Thanks for this thread!

Jun 20, 2010 08:12PM Irishred wrote:

And yes I have chronic brochitis and pleurisy all the tim,e now.

Jul 2, 2010 11:25AM precioustime wrote:

I had 33 Rad treatments including the mediastinal area.  2 weeks into treatments I had developed a dry cough and was told it couldn't be from Rads so soon.  It is now 3 1/2 months post Rads and have had a recent PET/CT scan-- the good news is that there is no evidence of tumor-- the other news is that there was mild pleural inflammatory changes likely secondary to radiation therapy.

Not sure if pleurisy is the same?

I have not had any sharp pains as some of you have described -- only really notice when I wake up in the morning -- cough with mucous and then if I have a good laugh-- I cough.

I had a 6 month follow up with the surgeon yesterday and he said "pneumonitis" -- is probably what I have and that there is really nothing you can do about it -- that it's probably at it's worse right now -- 3 months post Rads. 

Since Rads -- I was put on a 4 week regimen of steroids which worked amazingly -- a few weeks after steroids -- I noticed a cough with a lot of mucous and was then put on Albuterol inhaler which seems to help a little. 

Aug 26, 2010 07:16PM Lara86 wrote:

Hi. I found this thread earlier today when I did a google search on radiation pleuritis.

I've been experiencing the exact same symptoms for the past eight days. Lying flat, taking deep breaths and bending forward all cause excruciating pain that feels like someone is stabbing the center of my chest with a butcher knife. When I do try to take a deep breath, I wheeze and rattle. I've been having to sleep sitting on my couch, which is hard on my neck and shoulders. I also have a spongy mass where the pain is that is golf ball-sized and very tender to the touch.

Mine started in the middle of the night when I awoke to go to the bathroom and felt the stabbing pain as I got out of bed. It also hurt to inhale. I happened to have an appointment today with my surgeon for a re-check on my mastectomy (that was done in February) so I told him what I had been experiencing. He also felt the mass. That's when he told me he was pretty sure it was radiation pleuritis. I finished my 33 treatments in April, and they also left me with 2nd and 3rd degree burns and unable to wear a bra for a month afterward. My R.O. told me at the beginning of treatment that I would probably burn worse than most due to my very fair Irish skin.Just to be sure, my surgeon had me get a chest x-ray today, and I will find out the results when I see my oncologist Sept. 13.

After reading what many of you have experienced with your R.O.'s, I'm appalled ... and thankful I was blessed with a great team of doctors and nurses. I said, "I didn't know radiation could cause this." My surgeon said, "Oh yeah, it most definitely can." So there are doctors out there who aren't afraid of the truth. Don't lose hope.

Nov 18, 2010 06:28PM rubyz wrote:

Welcome Dr Weiss, I'm sorry that you are a patient now. You were my Dr. 10 years ago. I too went on the chemical hunt. I changed  everything. No bras, no antiperspirants, organiic food, no hair spray, etc, etc. Read a great book by English PHd geologist, "You Are In Control of Your Life". She believes that we have too much plastic  near our food. I stopped storing food in plastic bags.

Nowe after  8 years the pains in my chest have started. Three very bad attacks, thought I was having a heart attack.. Drs in hospital didn;'t  know what it was. Finally an Emergency dr  in neighborhood Urgent Care diagnosed it as Costochondritis.

What is your opinion  on this   common side effect? Do I have to live with this forever, with only ibuprofin and acetaminophen to control? Thanks

R

Mar 8, 2011 06:07PM KCinIL wrote:

I started my radiation treatment 2/21. By the 4th day, I had a slight pain in my chest behind my breast. On the 5th day (Friday), it was worse. I mentioned it to the onc nurse and she said if it was still bothering me on Monday, we'd check it out. The next night I went to the ER because it hurt so much to breathe, turn my head, bend down or raise my arm. I wanted to tough it out since the nurse didn't seem that worried the day before but I was afraid it might be something serious. They did an EKG, lung X ray and cat scan and determined it was pleurisy. They gave me an IV of and a prescription for prednisone for the fluid and dilaudid for the pain. I went home and felt better by Sunday. While taking the Prednisone last week, I didn't have the pleurisy problem. I hope it stays that way. When I told my rad onc yesterday that the ER said it was pleurisy, he said radiation doesn't cause that. I'm glad I've read this thread because now I know it's more common than he's telling me. This week though, I've had bouts of dizziness that come and go. Is that a side effect of radiation?