Linking you to resources and support in the lung cancer community!
I know that people who are in or have gone through treatment for lung cancer can experience pain issues due to all types of treatment. Have you had cancer-related pain? Did you talk to your doctor about it? How did your doctor address your pain and do you think he/she addressed it well enough?
Looking forward to hearing from you about your experiences. I'm curious because I am going to a meeting next week on pain management and how doctors approach it and I want to be sure I can accurately represent the lung cancer experience.
Yes Amy, I had pain mostly related to the treatments. My radiation oncologist prescribed the Fentanyl patch for my pain and it worked really well. One word of caution though. One of my favorite television shows is Doctor G medical examiner. If you get the patch, don't watch the show. I had been on the patch for about three weeks and she had a person on the show who had a leaky patch and subsequently died. It scared the peanuts out of me. What timing that is. As it turned out, there were some issues with the patches leaking but it's all been cleared up now. They seemed to work really well for me and I was about as comfortable as anyone can be while going through concurrent chemo/radiation treatment. Thanks for the post. I'll be interested in hearing other experiences on this subject. Good luck, God bless and keep the faith...
Hey David - Glad that pain patches worked for you! Did your doctor ever indicate being nervous about prescribing pain management stuff or do you think he/she was pretty comfortable with it?
I had the impression that he prescribes this particular medication on a fairly regular basis. He is a fantastic RO with many years experience at some of the best cancer centers (M.D. Anderson, George Washington) in the country and is an M.D. Phd. He really knows his stuff. I was glad to have someone as knowledgeable and experienced. It's one of the medications you start out with at a very low dose as soon as there is any pain, so if there is going to be a problem, it happens before it causes major trouble. It worked absolutely wonderfully for me. There are still other issues with the esophagus, swallowing and the "sunburn" and he was very helpful with those as well.
Hi Amy..oh yes I had horrible discomfort from radiation that burned my esophagus..this following chemo for SCLC. I was given the throat swallow but frankly I couldn't even swallow my own saliva, it was that bad...and I certainly couldn't eat anything EXCEPT for watermelon..a true lifesaver for me..hydrating, satisfying and nutritious..so for whatever it's worth, try it and good luck, I promise it does get better..bronie
Sorry I wasn't clear. I just edited by post to clarify that this is because of a meeting I am going to next week - not because I am dealing with it myself!
Do you feel like your doctors could have been more aggressive about pain management? It seems like a lot of doctors are wary of prescribing pain medication because of legal issues among other things, but we know that adequate pain management is so important in the healing process. Do you wish your doctor had done something differently?
Amy, sounds like an exciting meeting. Can we get some feedback from what you learn from it? This is a very important issue and I've seen many people who appear to not be receiving all the pain management they should be getting and probably needs to be addressed across the board. Maybe some of the nurses and even Doctors need to be better informed about the ways to handle the situation(s). I'm sure there are a great number of issues most of us don't really even know about from legal, physiological, to social and many others .. Thanks again for the post.
Hi Amy, While I have not had chemo or radiation after either nscl cancer surgery I have experienced a hugh amount of nerve pain, especially after this second surgery. I am seeing the pain management doctors at MD Anderson and they have been more than great about helping me with my pain issues. While I was in the hospital after surgery it seemed they were totally invested in keeping me as pain free as possible and that continues to today. It was comforting to me to know they were not judging me as just wanting more pain meds but actually proactive in trying to keep me pain free. I wish all doctors were like that. I had only one nurse out of all the wonderful ones who made me feel like she was not convinced I could be in that much pain but luckily for me she was my nurse for only one shift. Hope this helps and oh by the way, if I could have married the epidural after surgery I would have.
Amy it was especially hard for me since I am the person who would always choose a natural path to anything over prescription drugs, but this pain was incredible and all I could do was hold my chest and cry. In retrospect I think this nurse has decided she would be the councious of her patients and know what was better for them. I have no history of drug abuse of any kind and in fact if she had read my chart she would have seen all natural minerals/vitamines and no prescriptions. At MD Anderson if the pain management team is involved they take over prescribing pain meds, They were involved with me because I am allergic to many meds and I have only 1 kidney so had to be careful what I could take. Even then she had this look of non belief on her face when she spoke with me. Said maybe I just needed to take some deep breaths, in all she had a patronizing attitude and that was the last thing I needed and in fact probably increased my pain.. Nurses should not work in a cancer hospital with people in lots of pain if they have a problem with giving pain meds.
This is a subject very dear to my heart. My moms pain was well contolled at home but she was hospitalized several times during the course of her 5 month battle on the palliatve care floor. the timely administration of pain meds by the nurses was a nightmare. She was on Opana for awhile and fentanly for awhile. She was very out of it at times due to brain swelling and she would be in so much pain but was so confused she did not know to ask for meds...we would arrive to be with her and she would be crying in pain and we would check and she would be hours past a due dose yet the nurses would say it was her fault that she never asked for anything..they did not understand she just did not get it!! It was awful...we switched to the patch but then they would also let that lapse....
We never found that the doctors were lax about addressing these issues..it was the lazy, crabby nurses. These horrid hospitalizations changed the way my mom choose to handle her disease....she choose to stop treatment rather than be in patient ever again...she died 4 weeks later.
Hopegirl, I'm so sorry your mother and you had to go through something like that. It sounds like you have it right about her nurses being lax in their care for her. There is absolutely no reason anyone should have to endure a situation like that. I guess it just shows that some of the people who are working in our hospitals probably should find another career field.