As mentioned in an earlier post the latest plan was to get the best imaging in search of the cancer. Specifically, the goal was to get a PSMA PET scan, currently considered the best imaging technology for finding low levels of prostate cancer. After an exhaustive search of sites in the U.S. (where this scan is currently only available via clinical trial) and Australia my wife and I picked an imaging center in Sydney, Australia. Australian imaging sites offer the test at a fraction of the US price and, more importantly, have short queues. I needed results fast: Sydney fit the bill...and hey...we can visit Australia!
14 hours later (non-stop from San Francisco) we arrived in Sydney. This was our first trip to Australia so we were excited to experience the world down under. Sydney was nice. Great climate (think California), pretty countryside (again...think California), very nice people (Canadians), clean city on the water (reminded me a little of Vancouver). Unfortunately Sydney was just that: a nice anglo city. Not very different.
Our medical experience was interesting. The imaging company was very efficient and I felt very well taken care of. They were well aware that I had flown half way around the world to visit them and wanted to make sure all went well. The experience was similar to a U.S. imaging lab but everything was a little less awe inspiring. The buildings in the little medical park were all reasonable but kind of shabby. Hospitals and clinics in the U.S. are often very nice: reflective of the obscene amounts of money we spend on medical care here. Visiting the Mayo clinic in Minnesota is like visiting Oz! Likewise, the often touted American "customer service" wasn't so evident. Surgery, MRIs, radiation machines, CT and PET scanning machines (wow...realizing how familiar I have become with that world) are often cold. In the U.S. we solve that by providing heated blankets to the patient. Not true down under. There were other examples of a less customer accommodating world but generally the experience was great. I would ascribe the differences to Australia's extra attention to cost: socialized medicine.
The PSMA PET scan was completed and I got my answer the same day: cannot find the cancer. This was disappointing but also a little reassuring: no evidence of bone metastasis yet. My PSA at the time of the test (2.1) was high enough to see the cancer if it was in a single (or a few) glob(s). The fact that it did not show on the scan suggests the cancer is scattered around (probably not practical to excise/radiate/freeze).
My plan at this point (no cancer found) was to return to the U.S. and immediately begin hormone (ADT) treatment. If I can't cure it I want to slow it down as soon as possible. Unfortunately, my point of view on urgency is not the same view held by my cancer team (see my post for more on this problem). I have 3 teams helping me: Mayo (primary team), UCSF (second opinion team), and Kaiser Permanente ("B" team). I have been trying to communicate with my Mayo "quarterback" since returning from Australia 10 days ago but he is unresponsive. I got some help from one of his teammates this week and discovered he is out of the office all next week. The Mayo team members are all deferring to my quarterback but the quarterback is AWOL!
I have also reached out to my UCSF team and am told I am on the "phone call list" for next week. However, if the doctor calls and I don't pick up I miss my chance.
This is VERY frustrating. My team at Kaiser (the "B" team) are ready to give me a ADT shot when ready but I am not sure this is the best approach. I need Mayo and/or UCSF to respond!!! Meanwhile my cancer is rising very quickly. Every 3 weeks my PSA level is doubling.
ARRRGGGG!!!!!!!
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