My Story – Uterine (Endometrial) Cancer: How to Upset a New Cancer Patient

Today, Tuesday, November 12, after much ado about something, I finally have two MRIs (magnetic resonance imaging studies) scheduled–abdominal and pelvic, with and without contrast, to determine whether the cervix is involved in addition to the uterus (see the 11/9 post The Journey Begins for background).

Having these studies is a good thing so that I will not be rushed into either surgery or radiation treatment without knowing the extent of the problem. As mentioned in the 11/9 post, both my gynecologist and the oncologist believe that the cervical cancer cells noted on the pathology report from my D&C (dilatation and curettage) on 10/28/13 were scraped down from the uterus during the procedure. This would be good if it turns out to be the case and would likely mean that I would have a hysterectomy very soon with no preoperative radiation treatment, which would take about six weeks and, of course, delay the surgery by a couple of months. The need for postoperative radiation would depend on the results of the final pathology report.

Scheduling these studies, however, has not been a good thing. The primary message of this blog is that patients need to be totally aware of what their healthcare practitioners–and their staffs–are doing and to facilitate things as far as they can. Here’s what happened, just since last Thursday, 11/7–it’s pretty detailed, but I fear that many, many people encounter similar problems:

• During my initial visit with the oncologist on 11/7, he ordered the MRIs (and a chest x-ray) and said I should have them done within two or three days (this was a Thursday).
• When I got home, I called our local radiology center and set up a tentative appointment for today, 11/12, at 12:30 at their satellite facility. This was tentative because they needed to get the doctor’s orders, as well as insurance pre-authorization, for the MRIs. The process for obtaining insurance authorization needs to be started by the doctor’s office, so I called them, was transferred to a couple of people, and finally spoke with a “technician” at the doctor’s office who said she would call the insurance company that afternoon and get back to me that afternoon. She didn’t.
• On Friday morning, 11/10, having checked with the insurance company to confirm that the authorization process had not been started, I made a series of phone calls and sent faxes with the doctor’s orders to the radiology center and satellite facility and copied my doctor’s office in an effort to get this under way. I provided everybody’s phone and fax numbers in the hope they would contact each other. They didn’t.
• Finally, about 4:00 PM on Friday–pre-weekend, which was an additional worry–the doctor’s office called with reference (case) numbers, not authorization numbers, and said I needed to call my insurance company to get the actual authorization numbers. So I did and was transferred to Member Scheduling. I gave them the case numbers, and they gave me the authorization numbers. I faxed the doctor’s orders with the handwritten authorization numbers to the radiology scheduling department. I called to make sure they received the fax, and the same girl who had given me my tentative imaging appointment said they had. Then she said they didn’t have any openings for my studies until Wednesday, 11/13–the same day I was scheduled to see the oncologist! I’m not sure, but I may have shrieked. She looked at her records (or screen) again, saw the appointment for today (Tuesday, 11/12), and said, “Sorry, I forgot.”
• Yesterday, Monday, 11/11, the radiology department called to confirm my 12:30 appointment at the satellite facility today. Then the doctor’s office called to change the time of my visit on Wednesday, which was only an hour later and was OK. But when I told the doctor’s assistant that the radiology center said they might not be able to read the study before Wednesday but could give me a CD, she said the doctor had to have the report and the MRI CD to determine my treatment plan. I asked her to call the radiology center and gave her the phone and fax numbers. This was about 5:00 PM. I also told her about the difficulty I’d had last week getting her office to call my insurance company. She tried to tell me that it was the insurance company causing the delay, but I knew better because I’d spoken with them. She apologized and said she’d try to find out who in the office I’d spoken with. I just thought somebody there should know.
• Today, Tuesday, 11/12, at 9:00 AM, the radiology department called to reschedule my appointment for later today, 5:30, and at the main medical center rather than at the satellite facility. This was the same girl who had forgotten she’d given me the tentative appointment last week. This time she said she forgot that the technicians wouldn’t be at the satellite facility today because they were doing only cardiac studies, so they had to make the change. OK, I have little choice–gotta get this done. Then I reminded her that these were stat studies and that the doctor needed the report by tomorrow. She said she saw no notes to that effect in my records. Did I know who the doctor’s office spoke to? Did I know whether that person was working today? When I said, “My God, I have to do everything myself!” she offered to call the doctor’s office. I gave her the name and number and asked her to call me back, which she did. She says the doctor’s office is supposed to re-fax the orders with the word “stat” on them so they’ll read the studies tonight.
• A friend from my local reading group (more about them later–they’ve been great) had been planning to go with me this afternoon, so I had to call her and explain this frustrating and upsetting situation. Luckily, she was available this evening, so she’s still planning to accompany me.

I hope that tonight I can publish a post about having had the two MRIs and chest x-ray done and the report faxed to my doctor. Who knows, it may work out this way. I’m still planning to see the oncologist tomorrow, CD in hand at least, so let’s keep our fingers crossed.