Long frustrating PC journey

I was diagnosed with prostate cancer in October of 2010 at the age of 54. psa before treatment 6.4 Gleason 3+4 treated in early 2011 with Cyberknife at UCSF. When psa hit 2.14 in March 2019 my doctor ordered a pet/ct axiom it was denied by my insurance they said I had to do a mri and bone scan. The mri was in late march bone scan in April. the bone scan was negative The mri was preformed at my local facility and the radiologist stated that there was evidence consistent with recurrent cancer. The radiologist at UCSF said no evidence. I then had the pet/ct axiom in late June when my psa was 5 that was negative. Uroloigist at UCSF wanted to start me on hormones but as I researched it I found out that the posability of finding the cancer after beginning hormones would be problematic and less chance for a cure. I then had a biopsy in September also negative and a request for another pet/ct axiom was denied. Had another bone scan in December again negative. I am now waiting to be scheduled for PSMA gallium 68 scan trial at UCSF in February. My psa rose consistently at doubling time of 7 month for 4 years and 2 of the last 3 much faster. I have read that is a little unusual in that the aggressiveness of your cancer stays the same as when it was born. Anyone out there have any comments suggestions or similar issues. Thanks
5/6/11 2.33
8/4/11 1.84
11/7/11 2.37
2/6/12 2.96
5/5/12 2.08
8/11/12 1.250
11/2/12 0.84
5/9/13 0.23
11/2/13 0.171
5/1/14 0.10
11/19/14 0.068 hit the lowest
5/15/16 0.079
11/23/15 0.088
2/11/17 0.17
5/4/18 0.754
8/13/18 1,08
11/26/18 1.51
3/6/19 2.14
6/5/19 4.71
9/7/19 6,74
12/6/19 14.80

PS, What was biopsied?

Stecruz said...
My psa rose consistently at doubling time of 7 month for 4 years and 2 of the last 3 much faster. I have read that is a little unusual in that the aggressiveness of your cancer stays the same as when it was born. Anyone out there have any comments suggestions or similar issues. Thanks

Stecruz:
My PSA history has been non-linear. I've had PCa for 18 years and my PSA DT has changed several times. After surgery in 2002 PSA stayed low - .02, .04 or so for several years. It than stayed steady at 0.1 for a couple of years. Then in less than a year it doubled to 0.2 and doubled again to 0.4. Likewise after salvage radiation in 2010, it stayed undetectable 0.00 for nearly 4 years, then went up slowly for a couple more years. But in early 2018 it went from about 2 to more than 6 in about 4 months.

Humans think in a linear fashion. Cancer is not bound to act in a linear fashion. Every cancer is different and every person is different. There are no norms. Something called DNA. Evidence based medicine is linear. That is why a few docs like Snuffy Smith, Oliver Sartor, Stephen Strum, Mark Schulz, Eugene Kwan and a few others have been helpful to the treatment of advanced stage PCa. They certainly follow the scientific method, but they clearly understand that the enemy does not follow our conventions or play by our rules. Spo they try break out strategies and combinations to keep the cancer on its heals. Often this works. Advanced stage Cancer is ever mutating and not giving up linear patterns that we can anticipate and treat via a recipe. It can be a very tough situation.

If your strategy is to find out where the critters are, I would see if the Ga-PSMA trial folks you mentioned can take you a couple of weeks sooner. I've also read you can pay out of pocket for the scan at a number of places in the USA. Others know exactly where and about how much (I seem to remember between 2K and 3K).