Newly diagnosed with prostate cancer and still gathering information

Are you on ADT? With a Gleason nine there is a chance of this coming back aggressively. Are you still working with a urologist Or have you moved on to an oncologist?

As I’ve mentioned before, some people I’ve known with a Gleason nine are still around 30 years later.

I wish you the best of luck in the future.

Good morning. After two MRIs and a biopsy that were negative, my second biopsy showed two cores of cancer, one at 3+4. I decided on surgery. My surgery went fine with NO incontinence issues, which I attribute to religiously doing Kegel exercises and an excellent surgeon. My surgeon told me I am one of the 10% who have no issues after surgery. However, my pathology report showed my cancer was actually 4+5 with clear margins and no spreading to lymph nodes. Since then, I have had 5 PSA tests which have all come back at < 0.01 undetectable. Always hoping and praying for more of this in the future. My advice to is: do as much as you can to get accurate cancer scores; and at least from my perspective, the surgery was my best option. All the Best!

It’s ORGOVYX - not new in the US. I never had Lupron so I cannot compare SE’s.
But my experience was not bad and more annoying than life-ruining. Others were not so lucky. Best,
Phil

glennh23, It seems to be more effective than lupron without flares and a quicker return of testosterone after treatment. While it was approved here in 2021, it has been a slow pickup.
Not exactly fun, though. It has a higher patient rating than lupron, meaning the side effects weren't as bad.

Hi @glennh23 The word "new" is relative. What is new in UK is not as new in USA. Or in Canada. In this support group, there have been several posts about the new drug's effectiveness. But thanks for your post.b

Hi guys, this is a new drug. What’s just been released in the UK have a look and see what you think.It’s Relugolix. It comes in tablet form looks quite promising.

Robert, when you say ‘something precise enough’ are you talking about focal therapies such as HIFU or TulsaPro?
Phil

Yeah, get you. A friend, who is an Internist and helps people with this very question, had RP. He wanted it out. He is my age. 1+ year later he feels great. Recovered nicely all functionality.
I’m betting a bit on the technology. If I can do something precise enough and kick it down the road, I might be able to do something similar later. Anyway, I appreciate the reminder. My best to you!

JC76, if you contact PCRI the are located in Culver City California, they also have lots information online that you may find beneficial. Your PSMA pet scan will give you a better sense of treatment direction, My Gleason is 9 and I’m waiting for the Pet scan next week also to decide, one thing I know finding the best surgeon or radiologist it’s half the battle.

It’s amazing what surgery finds, even though I was totally against it at first.
My surgeon found bladder cancer during my procedure and told me that radiation might have pushed it into a more aggressive grade.
It was treated with BCG infusions and was said to be in remission before my recent 25 salvage sessions.
Hoping that the radiation doesn’t wake that sleeping dog!
Phil