Newly diagnosed with prostate cancer and still gathering information

Bruce - yes , I have been there . Its a huge shock when you hear these diagnosis words ! How old are you ? Your PSA and Gleason are not "off the scale" and actually your PSA is quite low to many pre treatment . Get that PSMA and let us know what it says . You should be able to get a good bounce off of a 4.1 PSA . I had the operation about 4 years ago in April 2021 . Healing takes some time 3-4 months , but after that I was fine . No incontinance , no pain, ED was fine after the first 6 months . I was 58 when I had it , now 62 . I would do it the same way again. God Bless and let us know how the Pet scan works . You may want to ask for a MRI WITH contrast too ! Very effective at time looking at soft tissues in prostate and seminal vesicles . James on Vancouver Island .

Thank you all for sharing your experiences, it helps to know that others are in the same fight. I hope to have a good report one day soon

Hi Bruce,
So sorry that you have joined us, but know that we all hope your journey will be made a bit easier with knowledge of the paths we walked. When I was first diagnosed, I found recent larger studies of treatments and outcomes incredibly helpful. Prior to each inital consult with the urologist, RO and MO, I asked them to provide me with the most recent studies upon which their recommendation for treatment would be based. Those studies and the conversations at each initial appointment made it much easier to arrive at a treatment decision. To this day, I still feel that, regardless of what the future brings, I made the best choice for me given the data available at the time and the factors that are most important to me in terms of quality of life, then as well as into the future.

The message to each doctor prior to the initial visit worked so well, I have conntinued the practice. I find a detailed message has helped ensure my understanding is correct and that questions and concerns are addressed making the appointment more productive. I also believe in messaging the doctors/PA between appointments with additional comments, questions and concerns.

Finally, remember to keep your PCP in the loop. Oncologists treat cancer, but are not always the best at mitigating side effects or identifying new health issues masquerading as side effects which, without the watchful eye of the PCP would go undiagnosed or improperly treated.

Here are several links to studies that you might find helpful in better understanding treatment options and outcomes:
March 2023
Fifteen-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer
https://www.nejm.org/doi/full/10.1056/NEJMoa2214122#ap0
January 2022
Abiraterone acetate and prednisolone with or without enzalutamide for high-risk non-metastatic prostate cancer: a meta-analysis of primary results from two randomised controlled phase 3 trials of the STAMPEDE
platform protocol
https://www.thelancet.com/article/S0140-6736(21)02437-5/fulltext
February 2024
Comparing side effects after prostate cancer treatment
https://www.nih.gov/news-events/nih-research-matters/comparing-side-effects-after-prostate-cancer-treatment#:~:text=About%20a%20quarter%20of%20those,of%20men%20who%20had%20surgery.
The NCCN Guidelines for treatment of prostate cancer will help you understand the consensus guidelines for diagnosis, staging and treating the disease. Go to the link below, then click on the PDF icon for NCCCN Guidelines Version 1.2025 (note that the 1.2025 denotes the first quarter update for this year and will change with each quarterly update as do some of the guidelines contained in the PDF). These are not the patient guidelines, but the clinical guidelines flow charts which are produced to guide clinical practice. There is a great deal to digest, but it is worth spending the time to learn how to navigate the charts and footnotes:
https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459
Best wishes to you as you continue your research and treatment! I hope you will continue to share your experiences along the way to help others following in your footsteps.
Bill

Hi,
I was diagnosed a year ago with Gleason 8.
Depending on what other meds you are taking, like finesteride, they usually double the PSA.
I had 4 scans including a PSMA, and needle biopsy for a spot on my back. I was clear.
Did your cancer mestastiz?
Surgery was ruled out for me due to age (I'll be 80 this year).
Because of my Gleason score I did 46 days of radiation therapy and have shots every 6 months for Androgen Deprivation Therapy.
I will say one of the side effects of that for me was depression and anxiety.
A resource I used extensively was the site, Prostate Cancer Reseach Institute (pcri.org). Lots of videos about treatments, etc. Dr. Mark Sholtz. Excellent resource.
Good luck on this journey no one wants to tske.

At this time I am waiting for my Petscan to confirm that the cancer hasn’t spread outside of the prostate. I’m not on any medication yet and no intervention has been taken yet.

I had HIFU 7 years ago, which melted half my prostate and the cancer. It's the least invasive way to get rid of the tumor. No side effects.
Check out High Intensity Focused Ultra-Sound. My best for your health.

Been through the grinder as far as treatments. Diagnosed at 71YO FEb2019 PSA 43 Gleasons 7-9 Bone scan and PET scan RP 5/2019 RT after 2 sessions Two sessions of Lupron, quit both after a few months due to horrible side effects. It is a very bumpy ride filled with controversy and conflicting opinions. Get as many opinions as you can as so many are inaccurate and just wrong. ADT Lupron and others have been a real bitch for myself. As to RP nerve sparing surgery ? Mostly a myth as very few servive RP with those all important nerves that keep you from leaking and the save ability to "sport wood".
Best,
SW http://www.woodlawnmill.com website

You say Gleason 7-9. No such thing, if you have one 9 you are a Gleason nine. As a Gleason nine your chance of having reoccurrence is very high. Dropping ADT because of side effects may sound great, but it can make your life very short, and Reoccurrence very soon.

Is your PSA rising? I know people with Gleason nine that have gone on ADT vacations when their PSA was low, due to being on ADT, only to find that they have multiple metastasis within a short time after the ADT vacation.

There are a number of people in this forum that have had nerve sparing surgery and it did work. Even had one person report that they only were able to keep half their nerves, but still were able to get an erection. Results will vary!

Good luck!

I and many others had nerve sparing surgery, it's not a myth - not even mostly a myth or partially a myth. I have no ED and am dry - not a single millisecond of either issue.

I'm sorry that your treatment has been such a tough ride, it's easy to get bitter with such things.

My Gleasons were 7 through 9 Hope this makes it clear. I dropped my ADT twice because of the HORRIBLE side effects.
SW