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.