Michele,

Same thing happened to me. My radiation doctor told me 7 to 8 weeks, but when I talked with the technicians, they would look at the chart (in the computer), and there was only 25 days "scheduled". At the 20th day, the Dr. assessed the progress, and finalized the amount (and type) of treatments (39 days). The fields varied. I had left and right "broad" treatments all 39 days, 12 of those days had an additional narrow "cone" treatment, and I also had 25 days of a broad frontal treatment. It stinks when they don't know where the primary tumor is, because there is more collateral damage. But, he'll get through this, and better times are ahead.

Not knowing or guessing is no fun. Just ask the doctors. You have a support system in place to bounce things off of.

Mike

Hi Michele,

Please don't feel intimidated about checking and double checking everything that you can think of. My attitude is that you've really got to look out for yourselves because, in my opinion, hospitals and doctors are overwhelmed. I always questioned everything. I may have developed a reputation for being difficult, but my intentions were in the right place. Heck, even with the best diligence I could muster, mistakes were still made. A data input error caused my mom to receive too much chemo on several ocassions. In fact, just yesterday, my mom went in for a procedure and within her chart they had a long list of meds. The only thing is that they weren't her meds. Upon looking at the chart, I pointed out the patient's name on the med list - it was another patient. These little mistakes, as you've found out, can potentially create a butt load of trouble, so don't be intimidated at all. You're Jesse's advocate and have every right to look out for his well being.

Best regards,
Dave

Thanks for the input Gary and Mike. The RO has assured us that everything is on track and did explain to us yesterday afternoon (when we went back up for the films and treatment following the CT's that were done that morning)what the remaining treatments would entail. It sounds similar to what you received, Mike, having an unknown primary as well. And I think the tech's statement did have something to do with her reading that there was one more day left on the first segment, according to what the RO told us, at which point they reached the maximum dose that the spinal cord can tolerate, and then changed the angle. So I guess that makes sense. I still can't shake the reappearing nervousness though, and I had actually managed to calm myself down after about the third week. Maybe I'm imagining it, but the techs seem to be going out of their way now to let us know every little thing they are doing, if they are running behind, they come out and let us know how much longer, it is almost making me a little uneasy, as if they have done something wrong and are trying to make up for it. Does that sound paranoid? If so, someone tell me to get over it! Has anyone else had that kind of panic set in about halfway through? I will tell my husband to make sure he sees his name on the monitor - thanks for pointing that out, Gary, although we should have thought of that before.

Thanks everyone for your help.

Michele

Michele,

I think the hospitals are becoming more and more aware of the potential for inadvertent mixups. It seems nowadays when I go in for any procedure at all -- even the simplest and most routine ones -- they double check my name, birthdate, etc. against the charts they are working with to be sure they have the right patient and that they are performing the right test.

Cathy

Michelle, Hi, Am responding to an earlier post of yours. My husband has been in bed most of the time since his surgery on Feb. 9th. However today he was up and wearing a golf shirt and walking away from me. I realized that his left shoulder was at least 2 to 3" lower than his right one[ this is a new thing] Then I remembered your post.This shoulder is on the side of the surgery. He is having pain, stiffnes and numbness from shoulder to neck.He also has an indention! Please follow up on Jesse's shoulder issues. I will be watching for anything you find out. Glad you got the rest of the tx. schedule straightened out. Amy

Thanks everyone for the support. I really don't know if any mistakes were made at this point or not, but just hope that our outcome is remission. Then I can get it out of my mind. In the meantime, as you all have pointed out, I will try not to feel intimidated in checking on everything that is being done. It's funny though, on the chemo side of the cancer center, they are always checking identity by asking name and birthdate constantly, whereas on the radiation side, they do not follow that protocol.
Amy, the RO said my husband will have to wait until treatment is over and he has some more strength before physical therapy can take place, but pointed out that it can't wait too long, stating that if you wait six months, it will be too late to get the function back. He did say however, that it may not come back. Currently, my husband hasn't complained of pain in his shoulder, but he cannot raise his left arm much at all. I guess this issue will have to be placed at the bottom of our priority list, as he will probably still be facing surgery for neck dissection after treatment is over. I'll let you know how things go with it. Let me know if your doctors say anything different than what we've been told.
Thanks.
Michele

I'm confused. What is causing his shoulder to sag if he hasn't yet had the neck dissection? I had PT twice a week all during radiation. How low is his energy level that he can't do PT? The therapist does most of it initially depending on the problem.

Eileen

The way the RO explained it is that the sag is due to the cancer that was in his neck (it was a very very large mass) invading some nerve, which he called by name by I can't remember it right now. He has had continuing problems with severe nausea and vomiting and the RO didn't think he could handle physical therapy at this point. The more I think about it, maybe we should at least request an evaluation right now.
Michele

WE don't go back to see John's Docs until Mar 31st, but not only has his shoulder sagged at least 3", but there is a big sunken place in his armpit! {as well as the indent right under his clavicle. Really strange looking. I am wondering if it has anything to do with the free flap from his arm? Or maybe it is a result of the jawbone surgery or lymph node removal. He is experiencing pain, stiffness and lack of range of motion with that shoulder and arm. Amy

Amy,

I have to really work at keeping my right shoulder (side of surgery) up level with the left one. I have to make a conscientous effort to lift it - if I don't think about it or am really tired, it sags 2-3 inches also. I too have the indention in the armpit - makes it impossible to shave - have to use Nair - of course John doesn't have the same concerns in that area! Just another one of those little changes! I work with that arm daily just by raising it as high as I can for as long as I can. Sometimes I have to support it with my left hand to keep it in the air very long. I also do some curls with 2-pound weights. I make myself use it when I'm putting dishes in the cabinet etc. It is stiff sometimes and weak but not as much as it used to be. Dr. S told me to keep moving it so I have tried to follow that advice - any little bit helps.

Pam