Tests in regard to treatment

[SCreader]

Hi Folks,

After RP ~6 months ago with persistent PSA > .15, I've begun ADT using Orgovyx, and salvage pelvic RT. When should I expect that my RO will order testing, and for what? For example blood tests for PSA & testosterone.

[Hidden]

Whomever started you on ADT, I presume its your MO.

The RO's job, as Ive noticed is just to plan out and execute a radiation treatment.

Your MO will do all testing and treatment plans.

[SCreader in reply to Hidden]

In line with what you've said, the RO hasn't shown any interest in testing. I have a primary care physician, and a urologist. The urologist had no interest in testing T when I discussed it with him a long time ago. Is it common for those in my situation to have an MO? One hasn't been suggested to me by my urologist or PC. It would be nice for someone to be coordinating the overall care.

[Tall_Allen]

Your RO will order PSA tests. When your testosterone returns to normal, he will order PSAs every 3-6 months to assure that the salvage radiation worked.

[SCreader in reply to Tall_Allen]

Allen, who, in my case, should order the T tests to determine if it's lowered enough, and then if it's returned to normal?

[Tall_Allen in reply to SCreader]

You should have already gotten a baseline T. Your RO can order it.

[Skippy3]

For reference I basically dropped my urologist because I blamed him for letting my PSA get out of control. He never ordered a PSA test or performed a DRE (digital rectal exam) until it was too late. You have to be your own patient advocate because the doctors only see you and think about you 15 minutes. Suggest getting a local MO to manage scans and tests. You might need to shop around a bit. My first two were quacks. You need one that plays well with others. I found an out of state doctor that specializes in prostate cancer. He sets the course and the local MO provides support. Good luck.

[Peealot]

I have the good fortune of living in Boston. Once my radiation was completed the Radiation Oncologist stepped back and for the last ten years my cancer treatment has been managed with a visit to my MO every six months for blood tests, a a Lupron injection and discussion about my current state. All of my scans and other PC related services are provided by the medical facility where my MO practices.

If you live near a major medical school you could probably receive care across every medical specialty by doctors who all have access to your electronic medical record.

[RMontana]

Get baselines for everything...may be to late. But know what your TET (testosteron), A1c, Hemoglobin, the works, are before ADT and RT screw up your metabolites. If you dont know where you started its hard to know if you are recovering or not. Also, for PSA get uPSA (ultra low) assays or tests...I did not like the Lab telling me I was < 0.10...how 'less than' was I? Get uPSA and watch it as it either stays the same or goes up. I published a lot of studies on uPSA as predictors of BCR; you could get a 10-14 month jump on a recurring PSA. Let me me know if you cant find these; go to my published site. Here is a podcast that shows what is happening to your body on ADT...take tests that measure these impacts.

healthunlocked.com/active-s...

ALSO, think about ED...your penile tissue will start to atrophy; you will lose size. ADT will most likely end your ability to ever have spontaneous erections and you are no longer having nocturnal erections. No one told me any of this and I found out 1 year post RP and RT that I had lost 20% of my length and girth...you can do something about this. AND if you decide on an implant do it early. The earlier you act the more you preserve...I know right not this does not mean anything. Trust me it will and then its too late to do anything about this. Here is my story...Good luck. Rick

@healthunlocked.com/active-s...

[SCreader]

RMontana, thanks for this post. I found healthunlocked.com/active-s... to be interesting and good motivation to keep the carbs down. 20g of carbs - Wow: perfectketo.com/keto-and-po... Thanks.

[SCreader]

Thank you all for the input. I welcome anymore.

[j-o-h-n]

SC read above: Get a good Medical Oncologist asap..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/14/2023 7:53 PM DST