Background: IIIA T1N2M0 NSCL Lung Cancer. 10/2013 URL Removal followed up with chemoradiation; Radiation to Mediastinum and area of lobectomy. Carbo/Taxol concurrent with 35 radiation treatments; Chemo only 3 treatments - allergic reaction to Taxol replaced with 3 treatments of Cisplatin/Etoposide.
4 months post treatment, ER visit and Pulmonary DR visit follow-up for extreme shortness of breath with minimum exertion, uncontrollable coughing and pressure and pain in chest area. Er chest x-ray showed minor pneumonia. Oxygen saturation normal while resting. Resting heart rate around 120 (previously diagnosed as Inappropriate Sinus Tachycardia-taking Cardizem 180 mg - no previous history prior to cancer treatment). Prescribed Levaquin and reducing dosage Prednizone dose pack. Two day follow-up with Pulmunolgist added Spiriva one puff daily and Proair inhaler up to 4 times daily. Two weeks later no relief and additional severe rib pain from coughing. Taking OTC cough med.
Pulmonologist now diagnoses Radiation Pneumonitis and adds cough medicine with codeine and 15 day reducing dosage Prednisone 10 mg.
My question is regarding diagnosis and treatment. Based on my research this illness can be very serious and lead to fibrosis or death. Also that this condition is controversial in that the diagnosis could be other illnesses. Should other diagnostic tests be done? Maybe CT or MRI? What meds are normally prescribed? No where could I find the standard of care. Should I seek treatment from my oncologist? Should i be concerned the cancer has returned. I really didn't have symptoms prior to cancer diagnosis. Found on incidental chest x-ray. Iam confused and don't feel confident in my care. This is important to me. What is the standard of care for radiation pneumonitis from diagnosis to treatment?
Kathryn
Reply # - May 15, 2014, 09:44 PM
Reply To: Radiation Pneumonitis
It's typical to do a chest CT to get more detail about what's happening, but that won't necessarily tell the difference between infection, inflammation, and even potentially recurrent cancer.
The most direct way to clarify what's happening is to do a bronchoscopy, but most commonly, you do a trial of steroids and/or anntibiotics, trying to treat the more reversible causes, and see what happens. It sounds like the steroid dose tried here is on the low side -- you'd usually give 60 or even 80 mg of prednisone per day for at least a few days to get a sense of whether things are improving. If not, you often taper quickly to keep from being on a high dose of steroids for a long time if they aren't helping.
The challenge with radiation pneumonitis is that there really isn't much that can be done, If it's mild, just a cough and perhaps some shortness of breath with exertion, you don't necessarily need to do anything. If more severe, you give steroids, oxygen if needed to keep the oxygen saturation over 90% or so, and then time -- radiation will often get better with time. Unfortunately, that's not always the case: sometimes the pneumonitis resolves completely, sometimes partially, and sometimes very little.
Good luck.
-Dr. West
Reply # - May 24, 2014, 11:22 PM
Reply To: Radiation Pneumonitis
Thank you Dr. West. In desperation I forwarded your response by email to my very fine oncologist who is out of country on vacation. She increased the Prednisone to 50 mg and I have seen improvement now on the 5th day of dosage. Still some chest pain and SOB upon exertion but the coughing is now minimal. On second day of new dosage had a ER visit from work due to chest pain, elevated blood pressure 177/120 and heart rate 135. White blood count was slightly elevated and although on iron therapy, hemoglobin was 10.5. Dr ordered chest CT to rule out pulmonary embolism. Negative for that. This will be a good baseline for my next Ct that my oncologist plans in 3 weeks.
Notes on CT report mentioned the following: There appears to be a small amount of fluid in the mediastinum, which is probably pericardial fluid....There is right hemidiaphragm elevation...There is patchy consolidation atelectasis or scarring in the posterior upper right lung. Irregular density suggestive of scarring is present in the apices...Finding: Atelectasis or infiltrate in the posterior mid and upper right lung.
Is this indicative of radiation pneumonitis?
Could the hemidiaphram elevation be a source of pain?
Is there concern for fluid in mediastinum?
What is significance in whether it is atelectasis or infiltrate? Is one worse than other?
Would you still suggest bronchoscopy?
I thank you for your response.
Reply # - May 25, 2014, 05:08 AM
Reply To: Radiation Pneumonitis
Unfortunately it is impossible for Dr West or any of us to make firm conclusions based on a CT report. More importantly, our statements apply to general situations, not to specific patients. His posts are not diagnosis or treatment recommendations. Evaluation and treatment decisions depend on context - a clinical exam, asking additional history, actually comparing the current physical CT images to the prior CT images, knowing where the radiation target area was, among others.
Ferreting out the cause of shortness of breath after radiation can be tricky. Usually I am reluctant to give steroids until infection has first been evaluated for. Sometimes this type of problem benefits from talk between pulmonologist, radiologist, and the radiation doctor, with careful review of the images. This could potentially be addressed with an outpatient pulmonologist or radiation oncology follow-up visit. Hope this helps.
Reply # - May 25, 2014, 10:51 AM
Reply To: Radiation Pneumonitis
Thank you, Dr. Creelan. I must say that I expected your answer to be such! Grasping for straws here. I have an oncologist, radiation oncologist, pulmonologist, surgeon and primary care physician. What I don't have is a team!
I will continue my treatment until my oncologist returns from vacation. She's the one that talks with all of the other DRs and directs my care. I live in a mid-sized town without a major cancer center but still with excellent care. Pain and the uncertainty that always follow cancer care tends to make one impatient.
I thank you for your help!
Kathryn
Reply # - May 25, 2014, 12:10 PM
Reply To: Radiation Pneumonitis
Hi Kathryn, Welcome to Grace. This post has become a bit of a rant, not unusual for me but I do end up deleting more of them than I submit.
Very good to hear you are on track for cure. I'm not a doctor and don't have anything to add to the doctors' comments about what's happening. My signature disappeared a couple of weeks ago (a short bio of my husband's cancer). He was dx almost 5 years ago and was on treatment for stage IV for 3 years until we/they :) decided on a treatment break for which he's been on for almost 2 years with no evidence of disease. I say this to let you know I came to Grace 5 years ago next month without a clue and have learned a lot in the interim.
Cancer can and will do anything, there's no such thing as typical when it comes to the whole individual with cancer, every decision depends on so many other things.
It sounds as though you are moving in a self advocating way. Dr. West has said many times that there is too much info and too much changing in the field of cancer care for one person to know everything. We have a group of specialists here who focus on just one or two types of cancer and each one will and most have said team effort is the best way to tackle many cases.
Although your doctors may not meet as a formal multidisciplinary team it sounds as though you and she are a team. Too she is discussing you with the other doctors which is the purpose. So that sounds like a good start. In other words your onc welcomes your input and confers with others who care for you. It's the next best thing to a "team".
We have a library of blog posts and videos on just about any timely topic you can imagine. Sometimes it takes extra effort (call in Jim our finder extraordinaire) to find what you're looking for. So if you can't find it ask and we will do our best.
to be continued...
Reply # - May 25, 2014, 12:13 PM
Reply To: Radiation Pneumonitis
continued...I know you haven't been dx with rad pneumonitis but if you want to know more about it and you've not come across this it will be helpful. (don't miss the live links) http://cancergrace.org/radiation/2008/08/11/pneumonitis/
For more than you'll ever want to read on the subject, this link is the results page from search terms, "radiation pneumonitis" http://cancergrace.org/search-results?q=radiation%20pneumonitis
Keep us posted.
And
All the best,
Janine
Reply # - May 25, 2014, 05:52 PM
Reply To: Radiation Pneumonitis
Thank you for the gracious welcome, Janine. My pulmonologist did diagnose pneumonitis however the diagnostic and treatment protocol did not follow what I anticipated. This is what initially prompted my initial post regarding the pneumonitis. I know that I am my own best advocate. It seems we, my pulmonologist and I, do not have the same rapport as with my oncologist. I am not one to be given meds and told to come back in two weeks! I like to talk expectations, setbacks, side effects, next steps, etc. This life that I live belongs to me everyday. I am actively involved in my care. In a perfect world, that should be every patient's expectation.
I look forward to seeing my oncologist on June 9th. Thank you for your words, the links and what you do here at Cancergrace.org.
Kathryn