How Much Time Between Your Diagnosis to Your Start of Treatment?

It’s important to keep the active surveillance truly “active.” That also means not relying solely on regular PSA tests, but also on other indicators of the status of the disease - % Free PSA, PSA Doubling Time, PSA Velocity, PSA Density, Biomarker (genomic) tests, Genetic (germline & somatic) tests, and MRI/biopsy/PSMA PET scans if/when appropriate.
The purpose being to hold off active treatment (and the side-effects that come with it) until and unless it’s medically-necessary (just as we do with all other diseases).

I had a prostate MRI in May 2021. I had my prostate biopsy in August 2021. I had a RP on Oct 1, 2021.

The MRI indicated a 1 cm enhancing nodule without evidence of spread to seminal vesicles or elsewhere in the pelvis.

The biopsy revealed a G9 tumor confined to the area of the nodule with the remainder of the biopsies negative.

My surgical path revealed capsular extension and seminal vesicle invasion.

Post surgery my PSA went up and 6 months after my RP. PSMA PET in March 2022 revealed a single met to T8. I was now metastatic.

If I had been more proactive after my MRI and gotten treatment sooner could they have gotten all the tumor or had it already spread? Nobody knows but with a high grade (G 8-10) tumor the sooner treatment is begun the better, IMO.

@netherlandlad, have you been able to reach your oncologist this past week?

No, I have not. The copay is around $2,500 per month. I am working with the VA to see if they would help with the cost. It seems like they have forgotten about it. Scheduling called and set up my next Lupron shot for April 3rd. Not a word about the Xtandi. I am still confused about the Xtandi as a big deal was made about it at my January 9th appointment. Thank you for your concern.

Bens1,
Can you tell me about care after the 5. How often do and how soon did you have PSA testing. Did you repeat a PSMA/PET. What should you watch for, worry about. Thanks

I had 5 photon SBRT treatments and 6 months Orgovyx. I was unfavorable intermediate with one 4+3, one 3+3 and clear PSMA. Last SBRT was Dec 28th, Orgovyx ends June 5. I have my three month blood draw nest Thursday and my doc "expects the PSA to be down". With the Orgovyx it will likely be down significantly from the 7.8 before treatment. He is saying PSA every 6 months after that. Those are the latest NCCN guidelines.

Stay Strong Brother

gently: 3 months after my treatment, I had psa testing and every 3 months thereafter until my last visit in January where my oncologist said every 6 months. I am still going to have a blood test every 3 months instead for a little while. I did not have a psma pet scan originally. I had a prostate MRI and then a biopsy. Like most of us, I watched for urinary and rectum issues but only had mild urinary issues which Flomax helped with. The anxiety was every blood test hoping I did not see a real jump in PSA.

You might try Xtandi support https://www.xtandi.com/financial-support
Sometimes you get lost in the shuffle, and sometimes insurance appeals or other requests get sent to the wrong place. It isn't that much fun but you should kick up some dust. Call your oncologist's office every morning, until you get a response. If there is a patient portal use that in addition. Sometimes a fax will get a response when nothing else will.
The offices can flounder with these appeals and the challenges to denials can be time consuming, but you should be informed of exactly what the delay for and status of your prescription.

Biopsy December 12th. Urologist left for vacation. Would return in 2 weeks, we made an appointment for two days after his return to discuss results. Cancer couldn't wait. December 18th lots of pain brought me to the ER. Night PA ordered CT scan, within an hour she diagnosed me with stage 4 to liver and lungs. Oncologist called next day, set up treatment plan while talking to me on the phone. Treatment, radiation started January 2nd, 28 sessions, followed by six rounds of Chemo and have been on ADT little over three years. I turned 70 last September. Stay active my friends. Everyday is a gift.

Thanks for the kind words. I will not let this rest. I have an appointment with the VA in a month. Their copay is $11/month vrs $2,500/month. Pretty easy to do the math. One thing I Learned in Vietnam is take care of yourself. Don't plan on help from others. You will find nothing but disappointment!!!!