Guest gre1 Posted December 18, 2004 Share Posted December 18, 2004 I have been lurking here for a while and I have a question I would like to float out here. I'll get around to an intro soon, but for now I'll give a brief rundown and ask my question. I had a PET scan in March as follow-up for tonsil cancer in 09/2002. I had 2 hot spots; small one in upper left lung and a larger one in the right hilar region. In short, I had a wedge resection of the left spot in May, Taxol/Carbo from 7/04 to 10/04 to shrink the hilar spot, and surgery on 11/18 to remove the right upper and middle lobes. All has gone well and I was, as best I can figure, recovering well, until this past Thursday. I was discharged on Thanksgiving and the pain at the Thoracotomy site has been slowly improving. It was worse than I had expected but my surgeon saw me on the 10th and said it looked good and the pain was normal. As for Thursday, I had my radiation simulation and was required to lay down on my back with my arms back over my head for well over an hour. To my surprise this did not bother me, but by the time I got home I was in the worst pain of my life. I am fully back to square one, as far as pain, if not worse. I can't get enough percocet! I spoke with my surgeon's nurse on Thursday evening and she said not to worry, I probably strained the muscles at the incision. All my treatments have been at MSKCC. Has this happened to anyone else? Thanks in advance for any help. This really seems to be an excellent site with some very dedicated members. Glenn Quote Link to comment Share on other sites More sharing options...
Andrea Posted December 18, 2004 Share Posted December 18, 2004 Glenn--greetings from a former NewYorker I can't answer you b/c my mom had her surgery through a procedure called VATS, it was minimally invasive laproscopic and her pain wasn't too bad. She took vicadin j ust occasionally. But I am sure others will jump in and give their experience. I remember reading on this website taht such pain is pretty common and one person (I can't remember who) even said that he/she got severe pain just from sneezing. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted December 19, 2004 Share Posted December 19, 2004 Hi, Glenn, You're about a month out from surgery....just about the time a lot of those nerves that were damaged by the surgery start to "wake up". I recommend that you don't allow anyone to tell you what they think your pain "might be". You've just been through a very serious operation, and the sudden onset of significant pain should be evaluated by your physician. (Mine turned out to be pneumonia in the operated on lung). Better to be safe. Quote Link to comment Share on other sites More sharing options...
Justakid Posted December 19, 2004 Share Posted December 19, 2004 Hi Glenn - Welcome. It was 4weeks from my surgery till radiation started. I was feeling pretty good after surgery, pain was subsiding and I had no problems breathing considering my lower left lobe was gone. Once my treatment began I started having alot, ALOT of pain again and shortness of breath. I couldn't believe how the treatment "harmed" me when I was doing so well after surgery. Laying on the table for the radiation planning was very painful, I could barely get up and had to be pulled up. I was even sleeping on the side I had surgery on! But now it's too painful! Who knows what it is. Take care, good luck with treatment and tell us about yourself when you are up to it. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted December 19, 2004 Share Posted December 19, 2004 Glenn, Radiation seemed to put me back a step or two in the "feelin' good" department. I had the most pain when tattoo'd for the fry zone - it was really tender under the arm that was on the side of my surgery and that darn "spot" sure did add a lot of owww where owww had been leaving. ...add to that the daily struggle out of clothes and into a gown that tied twice in the back and the reverse, getting up and down on a skinny table with no place to sink an elbow for support...oh yeah, it was a bite... Keep communication open with your medical team and discuss pain issues with the radiation oncologist. At this time, you see a doctor (one of many) quite a bit, get your money's worth... One month out...few more days and the itching will begin...you'll itch SOMEWHERE but you'll never be able to find the place to scratch... It DOES get better, I promise. Welcome to our family, Becky Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted December 19, 2004 Share Posted December 19, 2004 Welcome: I can only add that I had a lot of pain from thoracotomy for several months, although I didnt have radiation. I noticed that laying on those CT scan tables, etc., did seem to irritate things. My surgeon and his nurse wanted to wean me off the heavy pain killers, ((narcotic), way too soon I thought. Fortunately, the Oncodoc kicked in a few more vials of oxycodone. Now, almost 5 months out, Im just using a couple darvocets a day, if that much. But only you can judge whether your pain is tolerable and necessary, or if you should demand more pain relief. If something is aggravating the pain, check with the doc., maybe something can be done to prevent it....worth a try. Get the relief you need, if pain is intolerable. Good Luck....to us all.....Rich B. Quote Link to comment Share on other sites More sharing options...
chloesmom Posted December 19, 2004 Share Posted December 19, 2004 Glenn, I didn't have radiation, but I did have a similar experience to yours with the pain. I had a lot of pain after surgery of course, and then it seemed to steadily get better. Just about 2 months out, I started to get a searing pain on the surgery side from my spine to my sternum, all the way around. I had another chest x-ray, and was just starting chemo, so had evaluation from onc. She felt it was probably muscle strain, but I never thought so. It was a burning, tingling pain and it lasted for about two weeks and went away. I certainly encourage you to get a doctor's opinion and hopefully some pain medication. It does get better, although I remember when I was at your stage of this that I didn't think so. I'm 18 months out now, and am painfree and have been for a long, long time. Good luck to you... Cindy Quote Link to comment Share on other sites More sharing options...
Guest gre1 Posted December 19, 2004 Share Posted December 19, 2004 Thanks everyone, I have not started radiation yet, it was only the simulation. As for the pain meds, I have plenty but they just don't seem to do the trick. I'm pretty sure it is a muscular issue, as opposed to a medical problem, and I'll give it until tomorrow before I take a trip to the surgeon. Again, thanks to all that responded. Glenn Quote Link to comment Share on other sites More sharing options...
Guest gre1 Posted December 27, 2004 Share Posted December 27, 2004 Thanks to all that offered advice. The pain has is, for the most part, gone. I guess I shifted something during the simulation. I am feeling much better and have even been able to switch over to motrin for pain. I added some history as an introduction. Thanks again, Glenn Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted December 30, 2004 Share Posted December 30, 2004 Surgery pain was awlful 9-5-03. Radiation and chemo done by 1-23-04. Pain was so much worst after treatment. Putting your arms over your head for that length of time is awlful. They should of known better. Everyone is different, but my pain lasted longer than I ever thought. Keep taking those pain killers. People try to make you feel guilty. But don't . Pop those pills. Know one knows your pain tolerance and don't let anyone say, why are you still in pain. You say because I am. Worry about addiction later, if any. Take care!!! Quote Link to comment Share on other sites More sharing options...
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