As I said many times before, the biggest frustration in this whole ordeal was the lack of communication on behalf of the nuclear medicine department and the waiting around for people to get back to me. While I am comfortable that they are skilled radiologists and are competent in their jobs, someone doesn’t seem to realize that patients are waiting on pins and needles to find out how they are doing. Minutes seem to drag on forever and the more time you are given to think, the more negative thoughts can pop into your head, which may be unwarranted and cause undo stress. Below is a quote from parents of a cancer patient written on the LAF website talking about this exact subject. I couldn’t have said this better myself.
“The other valuable lesson I learned is that patients and their families are extraordinarily anxious waiting for results, and any lack of communication on a prompt basis generally makes them even more anxious. They always are concerned that the reason the information is not conveyed rapidly is it’s bad. Once I thought somebody was crying looking at one of my son’s scans. I just went bonkers. I found later on, it was somebody with a runny nose. The lesson is that patients misconstrue even the most innocent type of activities. If I promise something, I think it’s very important to convey the information in the time frame that you tell the patients.”
June 30th – I called the nuclear medicine department in the afternoon to find out the results of my scan from Saturday June 28th. I figured I would give them as much time as possible to read my scan given that the weekend just passed. I wasn’t at all surprised that the receptionist told me that the scan was not ready yet and that I should call back the next day at 11AM. Business as usual at this department.
July 1st – As I was told, I called back after 11AM (at 12:40PM specifically) to get the results of my scan. Not surprisingly, I was told that the scan wasn’t read yet and to call back at 2PM. My frustration was starting to build. I then called back at 2:34PM and was told that the scan/report wasn’t ready yet but someone would call me back by the end of the day. I asked again to confirm that someone would indeed call me back before the end of the day and I was told yes. I didn’t believe that someone would call me back but I gave them the benefit of the doubt. I waited until 4:45PM to call back, hopefully trying to catch the doctor before he left for the day. At this point, I couldn’t believe how the department could be treating me so flippantly and keeping me hanging like this. When the receptionist answered, I was told that the scan was read but the doctor had left for the day and that I would have to call back the next day. I almost lost it at this point. How can they be jerking me around like this? When I asked about the results, the receptionist told me that she wasn’t comfortable giving me the results over the phone since she wasn’t a doctor. That was fair. Then I asked if there was a report that she could fax me, and ironically, she had no problem doing that. So right after we got off the phone, she faxed the results of the post treatment scans to my office. While I am pretty knowledgeable about the terms in these reports, I think that is irresponsible to send a report to a patient without a doctor on the other end of the phone explaining the results. A patient should not be reading what could be negative and unnerving results without someone there qualified to explain the results and what everything means. At the very least, the results should be sent to my endocrinologist first so she could read them and then call me for the results. Anyway, too much time passed by from the scans and I wanted to be able to look at results. However, when I read the results, I got a bit nervous even though I was pretty sure that everything on the report sheet was normal. I saw the words “tumor” and “activity in the liver” and got a little nervous. Where was there a tumor? Did the cancer spread to my liver? I needed to speak to a doctor as soon as I could.
July 2nd – I called Dr. F’s office first thing in the morning to see if she heard anything about my results or was able to speak with Dr. T and tell me what was going on. Her receptionist got back to me a few minutes later and said that the scans were read but the reports were not ready yet and that I would have to call back on Thursday. I was emphatic on the phone and said that that was entirely untrue. I told Dr. F’s office that the results were faxed to me the previous afternoon and that it said final report. I faxed them directly to Dr. F’s office. Dr. F called me back about 20 minutes later. First, she apologized that I read the report without her seeing it first and that no one was there to explain the results to me. She said that she had a patient at the time but she wanted to calm my fears as soon as possible. She knew that I read the results the night before, and she reassured me that everything was fine and that there was nothing abnormal on the scan report. All of the activity that showed up on the scan was normal – my saliva, esophagus, bladder, etc. The activity that was seen in my liver was normal metabolism of thyroxin hormone leaving my body from the thyroid tissue in my neck. The “tumor” referred to in the report meant my neck (although there was no tumor) and not my liver. Dr. F told me that she didn’t agree with the language written in the report. The good news was that there were no metastases outside of my neck and everything else looked normal. It was very nice of her to get back to me so quickly. She told me that we would talk more and answer my questions at my follow up visit that was scheduled for July 8th.
This is why it is so important to be persistent. You have to be your own advocate. No one cares about you and your care as much as you do.
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