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Posted

So, I'm supposed to have a CT scan "about a month" after radiation. I stopped that on Sept. 9th, so last week's Oncologist appt. should have been the one where we scheduled the CT so that I could be restaged and we can see if I go on to have PCI or what. Didn't happen. She scheduled me for a CT/PET scan and wanted to see me in the office again -- in January. Ha.

So, when I go to the Rad. Onc. Monday and he's fully expecting to see CT results so we can discuss PCI, except that they aren't there. I tell him about my Onc. appt. and he agrees that Jan. is too late, so says he will call and straighten this out.

I get a call from the Onc. asking me to reschedule, and they want me to wait another month and do this in late November. So, I ask why the delays -- "about a month" from when radiation stopped is NOW. She says that the Rad. Onc. said I needed to be restaged "in a month." I try, to no avail, to explain the situation to her, but they aren't into listening to me -- a lowly patient -- so I just hang up and call the Rad. Onc. office, trying one more time to get this straight.

The Rad. Onc. Office says they will fix it, so I get another call to reschedule for Oct. 27th- finally! But this time, I'm to have the CT scan (chest/abdomen/pelvis with contrast -- no PET) early on the same morning as the Oncologist appt., as she is going out of town. I tell them I prefer to have the CT at the hospital as an OP, and she tells me I need to have it at their imaging center for consistency -- having all my scans in one place. I point out that all my scans but one HAVE been at the hospital, so she tells me they can't get the report quickly enough unless I have it done at their place. (Keeping in mind this has nothing to do with anything besides putting $$$ in their pocket.)

While I'm at the hospital having an ultrasound (follow up for old thyroid nodules) on Wednesday, I check with them and they have plenty of times to do the CT and get the report to the Oncologist, so I make a note to change this when I get back to work. I almost made it, except that I had pulled "something" in my right shoulder/upper back, and by the time I got to work, I was gasping to breathe -- whatever was pulled in there really HURT when I tried to breathe! It scared my sister, so we called my PCP and he said take me to ER -- he wanted to make sure I didn't have a pulmonary embolism.

So, I spend the better part of Wednesday in the ER -- had no blood clot, had indeed "pulled something," and it began to get better later in the day. While there, they were going to do a chest CT, and I talked them into doing the CT of my chest/abdomen/pelvis with the contrast and they did it so I don't have to go back next week and have another one! They even gave me the films to take to the Oncologist, and I did that this morning.

I figure they will be none too happy with me for going around their system, and may even think I staged the ER visit just to outfox them, but I really don't care much what they think lately! I think I may just need to change Oncology practices, because this is the 2nd one in this same practice who doesn't seem to have her act together to treat what I have. She is very nice, which puts her leaps and bounds ahead of the first one, but doesn't seem to have a clue about the sequence of events in my treatment, and that office isn't much inclined to listen to what their patients say.

The good news is that the ER doc said the preliminary report from my CT looks good -- no embolism, but all the bad stuff that was there in May "appears to be resolved." This is NOT an all clear or declaration of NED, just preliminary. They will have to take these films and compare to the others, and as the ER doc said, they know what to look for and where, and we were just screening for an acute problem on Wednesday. I'm not going to count my chickens just yet -- will let them all sit on the eggs until I go in next week to hear about the scan in detail.

Given my luck with that practice, they will have lost the films within an hour of my dropping them off this morning, and not have a clue what's going on, will wonder why I didn't show up that morning for their scan, etc. :roll: I'll be calling Monday morning and Tuesday morning and Wednesday morning if I have to, just to make sure they have what they need!

Good grief -- I didn't mean for this to be so long, but there ya go ...

Di

Posted

Diane,

Are you sure you don't commute to Oklahoma for your medical care?? Your doctors sound frightingly close to my own experiences!!!

I am constantly plotting and trying to think of ways to circumvent what they are potentially ready to screw up. Sounds like you are constantly on top of things still... just think..it keeps our minds quick!! :shock:

Glad to hear that preliminarily anyway, all looks good...

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