Newly diagnosed with prostate cancer and still gathering information

At this time, my Urologist is in the process of getting a Petscan to determine if the cancer is still only involving the prostate. Of course with insurance involved it doesn’t happen quickly. The Urologist told me that I will have the opportunity to meet with an onocologist to discuss other possibilities for treatment. I took into consideration that both of the doctors I have seen are surgeons so I feel that surgery would be their first choice which has been the case. My preference is for the least invasive procedure. I have been reading about HIFU as an option if I am a candidate for this treatment. The first doctor I saw painted a very bleak picture for any type of radiation, and this was without a Petscan. An hour after receiving my diagnosis his office was calling me to schedule the surgery.

Yes alaccoanmeno5. You are correct in your post. You had different Gleason scores form your biopsies and you listed 7-9.

I had Gleason scores of 6-7. Several were 3+3=6 and one was 3+4=7. This is what my R/O and urologist listed as my Gleason scores.

Most of the time and what my R/Os did was look at the worst Gleason score for the applicable level of treatment for that score. Does not mean you did not have other Gleason scores of 7 just like I had other Gleason scores of 6.

Did you have a Decipher test? I was original given a treatment of radiation and hormone treatments because my test revealed intermediate risk. The Decipher test was done and it came back low risk. My Mayo R/Os then removed the need for hormone treatments. I am one of those that really recommmends Decipher test as it had such a profound affect on my treatments.

My PSA when diagnosed was 3.75 rising every 3 months for several years. I just had my latest PSA test and was 0.17 My RO/s and PCP and me are very very happy. I am 3 months away from my 2 year anniversary of my last radiation treatment.

You are so lucky to have such good Gleason scores. In my very rotten boat mine were not so. With a PSA at 43 not the greatest. The only bright spot is all my Gleasons were 3+4+7 and others with the lower number first which means that the most aggresive cancer was the less common of the two numbers.
SW

I would have preferred to be 3+4 and not be heavy on the aggressive side but all things considered I do feel fortunate. I’m still looking at my options and trying to get as much information as I can.

I’m trying to decide whether I should get the salvage radiation after a recurrence. My PSA is 0.25 and my doubling time is about 15.8 months. I’m 75 so my expected life is about 85. My Decipher score was 0.84.

How did the salvage radiation go? I’m expected to have 35 treatments? Has the radiation changed anything?

Hey neronel, I did not notice any changes other than the usual SE’s they warn you about - some diarrhea, fatigue, etc.
But recent bloodwork showed a profound change in my white blood cell count; it’s probably transitory but it is something to consider if you are already immuno-compromised.
If you go on ADT, also expect your red blood cells to be affected as well.
It’s a personal decision; I have zero regrets about having ADT or radiation. Best,
Phil

Hi Phil,

Thanks for the info. How many treatments did you have? My doctor says 35. So, that’s 5 days a week for 7 weeks. What was your PSA at the start of treatment?

Do you know if the beam intensity is as higher as the stereotactic therapy where they treat certain spots that crop up on the PSMA-PET scan? Did your doctor request this imaging before the salvage therapy.

Lou

Hey Lou, I had 25 treatments instead of the older 35-39 protocol. Same amount of radiation, just a little more per session. Side effects after 6 months are even for both protocols.
It’s probably much lower than stereotactic, which is usually 5 session Cyberknife or MRIdian; that beam is very focused in a smaller area so they can give high dose radiation to a precise area. Salvage radiation is more like carpet bombing over a much wider area to kill whatever is there - foe or friend, unfortunately.
And yes, PSMA PET is pretty standard before therapy but they usually are clear until you get to the .5-.7 range PSA. Some men have much higher values and the scan is still clear so don’t put too much emphasis on it.
Are you going on ADT? If so, insist on Orgovyx; it’s oral and it does the same job as old fashioned Lupron but with less side effects ( in my case anyway).
Phil

Thanks Phil. That’s the most clarity I have had. I’m not sure about ADT but I will bring your suggestion up at my meeting with the doctor on Monday.

You’ve been a big help.

Thank you,

Lou

Glad to know it's not just me.