My Story So Far - 53yo / PSA 130

Hi everyone. New to this forum and this club we are all in. Just before Christmas, my routine check up yielded a PSA of 130 (!). I'd missed a few years of annuals...3 years prior my PSA was in the normal range. Very frightening.

MRI (PI-RADS 5), biopsy (4+4, with 11 of 12 samples positive) and then to PET/CT to determine if it had spread beyond the prostate. My urologist was kind about it but was clear that I should expect metastatic disease, given the breadth of cancer in the prostate and my PSA. My amazing wife and I were incredibly despondent.

Somehow, some way, the PET/CT showed no spread - not even to the lymph nodes. Some seminal invasion on one side, but it's all still in the prostate. Started hormone therapy 10 days ago (Lupron + XTandi) - it's early still but side effects are minimal.

I'm separately working with one of the best hospitals and surgeons in the country - he recommends surgery as he believes he can eliminate it. Consult next week with radiologist. Both surgery and radiation are equally successful in terms of cancer control - I should be able to get this well under control and possibly eradicate it. Side effects, near and long term, are the primary considerations.

My NY urologist recommends radiation only, given the high PSA and 11/12 nodes. The cancer is aggressive and I likely have microscopic spread - so recurrence is likely and, according to him, radiation post surgery can have worse side effects on continence and potency than radiation alone. I've read that radiation only can lead to bowel issues down the road, which I want to avoid at all costs. NY guy says that's not been a concern he has seen.

The surgeon clearly believes he can get it out, and gave me a 70% chance of saving the nerves. He didn't share the view of the post surgery radiation concerns, even if it returns. The surgeon's associate said that in his opinion, surgery is the way to go, because they are in control of what can be spared in the process. Radiation hits a larger area and is more prone to unwanted side effects. So the stories are varied. Lesson: get a number of opinions.

After the radiation consultation (and a second we will set up elsewhere), we will make our decision, which is likely to be surgery. I'm young. I like the idea of getting it out of me, especially since it's mostly contained in the prostate. If I did radiation alone, any subsequent prostatectomy that would be required in an emergency would almost certainly cause troubling side effects with continence etc.

My wife and I pushed very hard for all of the information, testing, etc, to move along as quickly as possible. I strongly recommend this. Don't wait - dive into all of it. It's there even though you wish it weren't, and there's no reason to wish otherwise and delay. Dive in and dive in hard to the research and understanding. Your prognosis is likely better than you fear, and education will help you understand that.

I may be having surgery as early as next month. But for anyone reading this just diagnosed: your story will be different. Make no assumptions - my doctors have almost never seen a PSA of 130 with no spread. But here I am. Your story will be yours and unique. There is truly a lot to learn and digest. And in the end, make the best decision for you. This is truly a manageable cancer in most circumstances, which itself was something that I found hard to get my head around.

If anyone has thoughts or insight from a similar story on the removal / radiation journey, I'd welcome them. I know that radiation is now more precise than it was. But my primary goal is a long life, even if I lose potency now. My gut is saying to remove it. Does that suck? Totally. But that's the hand I have to play, so I'm going to play it as strongly as I'm able - whatever that turns out to be.

I find all of your stories helpful in knowing this is a large club that I'm joining. Thank you for sharing your thoughts, concerns and responses - on this thread and others. It has helped me find a way, and I know it will continue to.