I would like to get some opinions about if I need to follow up on this situation and if so, how? After treatment yesterday, the radiation tech said, "see you tomorrow - the last one!" I said "that would be nice, but I don't think so, we have 16 more." She seemed puzzled, and murmured, oh, I'll have to check, I must be thinking of someone else." Today, following treatment, my husband stayed to see the RO for the weekly consult. The RO asked why they didn't weigh him, and my husband said they did, and upon looking further, the RO realized he didn't have the right chart. Then upon completion of the exam, he told my husband some adjustments needed to be made, if he wouldn't mind going back to the treatment room, that it would just take about 10 minutes. This was after he already had his daily treatment. After about 1/2 hour, my husband got tired of waiting and asked someone what the hold up was - they went to check - came back and said they needed to check with the RO about something - but when they didn't come back soon, he flagged another tech down, and she went to check and came back and said they decided they couldn't do the adjustments today. About that time, I came back from being in another part of the hospital having an upper GI, and they were explaining to me that he would have to come tomorrow for CT scans at 1:30 PM. I said he just had them done last week, which she seemed puzzled about, but then looked at his chart and saw that he did in fact have them done last monday, March 6. But she said it wasn't unusual to have them done again that soon because things change quickly. I accepted that and we went on over to get some lab work. On the way out I saw the RO and confirmed that we would be coming back tomorrow for CT scans, and asked if treatment would still be done, because we didn't want to prolong the completion. He said that treatment would be done as well. Before lab work was done, we got paged to come back and see the RO, and he came right out as soon as we got back over there, apologized, said he was upset with the techs that the CT's weren't scheduled for today and that there was another mix-up (this wasn't the first time they had forgotton to schedule them). He did say the responsibility was ultimately his for not making sure.
He proceeded to tell us to come at 10:30 for the CT scans (not 1:30 which we had just been told) and that after he got them back and mapped out a new plan, he would call us to come back up for treatment tomorrow afternoon.

Anyway, I am starting to feel as if perhaps they have been treating my husband based on erroneous information, first because of what the tech said about 1 more treatment, then the RO looking at the wrong chart, then CT's being done again so soon (one week) again. Should we be concerned? and if so, how to go about questioning the RO. I always feel like we are at their mercy and while I am not afraid to ask questions, I am intimidated to do so if it seems as I am accusing them of not knowing what they are doing. The more I think about this, the more upset I am becoming.
Thanks for your opinions.
Michele

I understand both why you are upset and that it is intimidating to say, essentially, "things seem to be such a mess here that I'm losing faith in what you are doing". But good grief--what a mess in terms of what the tech said and then teh RO "having the wrong chart" and then an additional CT and adjustments to the radiation plan. I mean, maybe these are all unrelated things and don't add up to a major screw up but I think you need to probe a little.

I guess what I would want a really clear explanation about is why the RO is "mapping out a new plan" in the *middle* of treatment. Were you told this might ahppen? And I'd be very direct in asking if this is related to teh techs confusion about thinking your husband was done with treatments or that the RO was looking at the wrong folder earlier. Try to ask in a calm, not accusatory or upset voice. I think you deserve some clear answers. Also, I would be sure you ask the RO directly, not the techs or nurses who may feel put on the spot more.

Good luck michele, come back and let us know how it goes. It does sound distressing.

Nelie

Thanks Nelie, for the advice. One thing you mention though, is it not common for new CT's to be done as the tumor shrinks? This is my understanding. However, I didn't expect that it should happen so quickly (one week) which is why I started to think something wasn't right, especially amongst the other inconsistencies. The mass on my husband's neck was very very large going into radiation, as he did not have surgery first. Consequently, the RO did say that throughout the treatment, he would be making changes to the plan as he monitored the progress. I will make sure to talk to the RO tomorrow and hopefully get some clarification.
Michele

Michele,
It sounds possible that doctors may adjust their plan of treatment depending on the patient's response to radiation but the patient has the right to know the reasons for such changes. Originally, I was planned to have 42 sessions of radiation but when I still had 5 or 6 left, the oncologist told me that I would need 6 more as a boost. He discussed this change of plan at his office and had to ask for my consent even though I had no option.I was given a card of schedule so that I knew exactly when I should show up and how many sessions were left. The technician would sign against the date after each session and so there wouldn't be any argument over the number of sessions left. As for the CT, I didn't have any during treatment as the tumors were still shrinking. The biggest tumor on my left neck measured more than 7 cm. I had the CT 2 months after completing the treatment. The next one was done 6 months later.You are right that you need clarification asap to ensure that your husband is receiving the right and proper treatment.
Karen

Thanks Karen. My husband's neck mass appeared to be about 10+ cm by the time treatment started, although some of that may have been inflammation and swelling versus the mass itself, as they did not do surgery first other than a panendoscopy and tonsil removal.

The CT scans they are doing throughout the course of the treatment are not diagnostic in nature, as explained to us by the RO, but are necessary to track the progress in order to focus the treatment where it needs to be. Today will be the third time not including those done right before treatment started. (He is getting XRT radiation.) Has anyone else experienced this protocol?
Michele

Michele, I'm sure you're right that that's why they are doing the CTs and adjusting the plan accordingly. I had IMRT and had already had my tumor surgically removed so the radiation was to clean up any stray cancer cells hence no need to adjust things as they went, so I didn't understand that but it makes sense.

In that case, the whole thing doesn't sound quite so scary to me in terms of the confusion. An RO grabbing the wrong folder sounds like it could happen without being connected to anything else--same with a tech mentioning the treatment was almost done when it wasn't, and also forgetting to schedule the CT. I do understand these things are disturbing because you'd like to think they know something about you and be on top of your case without a folder or something in front of them (I've had the same reaction when my ENT at a follow-up appointmet forgot how long it had been since I'd had radiation--by a matter of 4 months!), but it's just another good illustration of why even in the midst of this horrendous treatment, everyone needs to stay on top of things for themselves or have a caretaker that will act as an advocate.

Nelie

Yes, Nelie, it is quite unsettling and I want to think that each incident was on its own and not due to a major mix-up. I hope that is the case. I am the type of person who usually gives the benefit of the doubt but think in dealing with a life threatening disease, that is not the best approach if there is even one little thing that doesn't seem right. Thanks for helping me calm down a bit.
Michele

Michele
I am happy to see you are being so protective of your husband, so many people don`t have that.

The girls have given you great advice, I hope you are not too shy to grab the RO and make him explain everything to your satisfaction. As you know we only have one shot at this , so make a pest of yourself make them see you are not just a number on a folder.
Good luck to both of you.

Marica

Hi all. Marica, I like the point you make about letting them know that we are not just a number on a folder. When they know you are not just going with the flow, but paying close attention to the details, perhaps there is just a smidge more conscientiousness on their part. We just got back from our appointment and I did ask to speak to the RO. He was very thorough in explaining what went on, admitting that there was a mix-up in that the CT scan should have been scheduled by his staff on Monday but assuring us that the treatment plan was not compromised in any way. So I feel better, although not 100% confident.

Unrelated to the above, but has anyone had any experience with the nerve in the shoulder being damaged from the cancer? I noticed in the last few days that my husband's left shoulder (where the mass is) is dropped significantly from the level of his right shoulder and there seems to be a indentation on top of his shouler. The RO said that the cancer itself caused it, not the radiation, and that the nerves may or may not come back and that once he gets through the treatment, physical therapy will be scheduled to determine if there is permanent damage.

Thanks for the input.

Michele

We've also had patients here irradiated for the wrong cancer because the previous patient didn't show up and the techs didn't change the program. There is usually a computer monitor in the treatment room - insure that YOUR NAME is on the screen.

My CCC gave me a three week (mid Tx) CT to measure progress and make tweaks in the programming (which is normal for IMRT but I am not sure with XRT).

They normally take a weekly x-ray on the LINAC itself for alignment checks.

Some centers run prople through these machines like cattle. I have heard of some machines in use 14 hrs a day.

You have to look out for yourself all of the time.

Hospitals have been required by law for some time to verify by multiple different methods the patient identification and treatment. If they screw up and irradiate the wrong area it is considered a "patient injury" reportable event (to the FDA) through the MDR "Medical Device Report" law.

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

Thanks, Pam, I am printing this for John right now. I am still chuckleing over part of you e-mail this am. But will reply to it in Friends later. Amy