One month until my CT scan! Seems weird to be counting down to a scan! I am somewhat regretting my decision to wait 7 months between scans instead of the usual 6 months! I've said before that this is the longest I've gone between scans since my diagnosis. Most have been no more than 4 months apart. That was, in part, due to liver surgery and the issue I had after. See my post from 4/5/2013.
My scan is scheduled for the end of Feb. with my Oncologist appointment the following week. I have always seen my reports before my doctor (except for my very first scan--I didn't know I could get the written report online). I've never really felt Scanxiety before but I am feeling it now. Even though I tell myself that nothing will have changed, this is a slow-growing cancer, I still have that anxiety of all the "what if". What if they've grown? What if there are new tumors in my liver? What if they've taken over my liver? What if they are now popping up everywhere? I know that this is very unlikely. I will genuinely be surprised if I am not still dancing with Stable Mable! Even with that said, I am still going to worry.
I will be getting my blood work done next week so if anything is truly amiss, it should show up there. I don't have to wait long for most of my test results. Only that damn pancreastatin that takes 3 weeks to get back! That is why I'm getting it so early. I want the results to be back before I see my doc!
Now I'm throwing another wrench into the "plan". There is a clinical trial at NIH (National Institute of Health) in Bethesda, MD for the Gallaim 68 Dotatate Pet/CT Scan. I am not sure that getting the Gallium scan right now would be that helpful (unless there is new stuff going on) but you go back every year for five years for a follow-up scan and this could be VERY helpful. The Gallium scan is so much better at "seeing" NET tumors than either CT, MRI, or Octreotide Scans are. It is not approved by the FDA yet so most patients end up paying the costs themselves to get this scan (anywhere from $4,000-$6,000. This trial is free! The only thing I would have to pay for is my first flight out and back. Returning flights are reimbursed. I can stay in-patient and not pay for room or board.
Clinical Trial at NIH
If I'm accepted into the trial, depending on when they would want me there, I will have to have an octreotide scan, CT scan and then the Gallium scan (unless my last octreotide and CT scan is within six weeks and it's been 20 months since my O-scan and you know how long since my CT scan). That would be a lot of scans and radiation in a very short amount of time. I think you stay for 3 or 4 days.
I'm gathering my info. to send in to see if they will accept me. I am not sure I would be able to participate though since I have no money to pay for the initial flight out and back. It's looking like between $500-$1,000 for a round trip ticket. Argh. I just figure I'll worry about that hurdle after I get accepted. I don't know if I should talk to my doc about it. I'm sure he'd be 100% for it since it would save the insurance co. money on my next scan! I could skip my Feb. scan if they wanted me out there before that -- they will send him all results. I just honestly don't know what to do. I would be going alone and that just sounds crappy. I mean, I wouldn't want to make someone sit around for four days being bored to death while I'm getting scanned. I am the only one who can stay in the hospital. You can't have anyone stay with you. It just sounds so lonely though. Of course, my ex lives nearby so I could always ask him if he wanted to come and see me. Show me the sites. You can leave the hospital. You don't have to stay 24 hours a day.
The only thing I don't have is my surgery notes. I think I can get them from my oncologist. I know they have EVERYTHING in my file... I'm going to ask when I go in for my blood draw and shot. I'll keep you posted.
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