Monday, August 20, 2018

Urgent Matters

It has been 8 weeks since discovery of my rising PSA following treatment. I have had numerous tests and met with physicians from Mayo and UCSF.  Unfortunately my PSA is rising rapidly: < 1 month doubling time.  Last PSA: 1.1 (5x higher than 8 weeks ago). I have an aggressive cancer.

I am now working with Drs. Eugene Kwon and Brian Davis from the Mayo clinic.  These guys are at the forefront of a recent direction in prostate cancer fighting: ogliometastatic prostate cancer treatmentOligometastatic defines a stage in the cancer's growth: "The oligometastatic state has been proposed as an intermediate stage of cancer spread between localized disease and widespread metastases". The goal of this treatment is aggressive detection and attack of the remaining cancer before it has spread out of control.

I have also met with urological oncology at UCSF (Dr. Peter Carroll) for a second opinion.  

At this stage we know that my cancer is growing rapidly (as measured by the PSA) but we don't know where it is.  This is because the current imaging technology has a limited ability to see cancer in small quantities.  I had a PET choline scan and a pelvic MRI two weeks ago but the cancer was not visible on the scans.  There is a more accurate scan available called a PSMA PET which is only available via clinical trials in the U.S. and I have been scrambling to find a center to get the test.  Since the PSMA PET scan is still a clinical trial it is hard to find centers which offer it and insurance doesn't generally cover the cost.  The test is cheap and easy to schedule in Australia. I'm narrowing my search and hope my test is done by early next week.

If the PSMA PET scan finds something it might be possible to treat the disease.  The goal would be to prolong my life: a cure is very unlikely.  This approach is a long shot. There are no studies which support this approach (studies will be difficult given the ad-hoc nature of the treatment). If the imaging finds a suspicious spot it doesn't mean it is the only spot: it might be simply the most visible location. It could be scattered in around in other areas as well. So...IF we find a spot and IF it can be treated where found (additional radiation or surgery) and IF we get it all in the spot treated and IF that is the only spot then I can make progress against the disease.

Meanwhile my cancer is progressing. At this stage the mainstream approach is to begin hormone (aka ADT) treatment. ADT should "arrest" the disease for awhile. As I have mentioned in previous posts ADT is very effective. It does not last forever but it could extend my life for years. Studies have suggested that ADT is better at prolonging life if administered immediately upon PSA rising instead of waiting. I am anxious to begin ADT to extend my remaining life!

Time, therefore, is critical. I want to begin ADT immediately but if I begin now I will eliminate the ability to detect the disease (the ADT will quiesce the disease...making it impossible to see via imaging). So...wait longer and maybe find/attack the disease or play it safe and start ADT.  These are the decisions I am grappling with now and for the next couple of weeks.  

Pacing

It has now been over three years since I was diagnosed.  The first couple of years were filled with a lot of fear but also a lot of action a...