Still Waiting

Thought I'd have been to Jacksonville again by now, but that's not the case. I called my case manager this afternoon and found that not all of the results of the tests I had last week have been fully reviewed. She did give me a heads-up that I'll probably need another scan when I do go back, but that it hasn't yet been scheduled. I'm hoping I'll get everything wrapped up by the end of the week.

Good News and More Scans

Good news from Monday’s MRI: It shows no cancer outside the prostate. This means they can proceed as planned, including the use of the Space OAR (see Nov. 24 post). EXCEPT, they need some more tests. Today I had the bone density scan I expected, and that they weren’t able to fit into Monday’s schedule. I also got some head x-rays, because they wanted a closer look at the hot spot between my eyes that showed up in Monday’s bone scan.

They also wanted a CT scan of my chest, because the MRI showed an area of concern on my spine. I expect this is related to a condition called DISH (Diffuse Idiopathic Skeletal Hyperostosis), AKA Forestier’s disease. This is a calcification of ligaments in areas where they attach to your spine. There are few, if any, symptoms—but I was diagnosed with it years ago when I had a little upper back pain. The CT scan took some time to schedule, but my case manager pushed it through so I could get it today.

I didn’t get the ADT injection, because they want to review all test results first…and the CT scan results probably won’t be available before Friday. So…back to Tallahassee. Now I’ll wait until they contact me to set up still another visit to Jacksonville, probably Friday or Monday.

Scans and Tests

I drove from Tallahassee to Jacksonville late Sunday so I could be ready for Monday (yesterday). I had three scans to check for any spread of the cancer outside of the prostate. These tests were in three separate buildings on the UF Health campus: the hospital, a newer building called the Pavilion, and a still newer one called the Annex (to the Pavilion). I downloaded a campus map to help me get around.

First, a bone scan in the Nuclear Medicine facility in the hospital basement. This started with an injection of a radioactive tracer. The radioactive material spreads through the body via the blood stream, and is selectively taken up by rapidly growing bone tissue, such as from a recently broken bone or a tumor. It also permeates various fluids in the body. Three hours later I was lying on my back while a radioactivity-sensitive camera passed very slowly over me, head to toe, for about half an hour. Then I turned my head, first to the left and then to the right, while the camera scanned just my head. The only thing that was immediately obvious in the images was an unusual hot spot between my eyes. This is assumed to be a bead of sweat that collected where my glasses touch my face.

Between the tracer injection and the bone scan, I had an MRI at the Pavilion annex. This was a more detailed MRI than most, with a stronger magnet and more detailed imaging. As usual with MRIs, it was a challenge holding still for more than half an hour, but even so I was surprised when they told me it was nearly over. For the last five minutes, they injected a dye into an IV they had put into my arm earlier so they could get an image with a visual contrast to the rest of the MRI.

After a quick and better-than-expected lunch at the hospital cafeteria, I went back for the bone scan described above, and then headed to the Pavilion building. There I got blood draw for various tests. The tests included routine health indicators, and also will help with a research project I signed up for; the idea is to look for correlations between easily performed tests and prostate cancer progression.

While in the Pavilion, I got a chest x-ray—front view and side view. They had to repeat the front view to get all of my lung area; the tech asked if I was a runner, as that increases air capacity (volume).

That was all for Monday, and nothing was scheduled for today…so I drove back to Tallahassee. The power was out in our house, and had been since just after I left Sunday afternoon. Doing a blog post then wasn’t exactly convenient. The power came back on at 5:30 this morning, so things are back to normal.

Next: I’ll drive back to Jacksonville tomorrow for a bone density scan. The ADT therapy I’ll be getting can cause bone thinning, so they want to see how strong my bones are now. After that, I expect to find out the results of this week’s tests and learn how and when my course of treatment will continue.

Back in Gear

A new appointment coordinator at the Proton Therapy Institute called today to iron out some details about my next visit. She followed up with an email listing specific times and events. I’m now scheduled be at PTI this coming Monday at 9:00 am. I’ll have a pretty full day of tests and procedures, with some of the results available for discussion with my doctor on Tuesday. I’ll need to stay into Wednesday for one final test. I plan to blog each day while I’m there with exciting information about the tests and procedures. Well, exciting to me. Okay, important to me.

Miscommunication

On January 2 I got a call from the insurance specialist at the Proton Therapy Institute to tell me she had confirmed that my insurance is all in place. Next: wait to get the agenda for my next trip to Jacksonville.

Yesterday (January 12) I emailed the PTI appointment coordinator to ask how much longer it would take for me to find out about my upcoming schedule. Today I got a phone call from a nurse at PTI saying she found out yesterday that I was ready to start scheduling my next appointment (!?!). Apparently there was a breakdown in communications between PTI staff members.

Now I'm waiting again to see when things will start happening.