Diagnosed with prostate cancer, where to go now in this moment?

Getting that first diagnosis is tough, as is all the decisions you'll be faced with. All I can do is tell you how I approached it when I was first diagnosed back in 2020, when I was 71. My gleason score was 9 (5+4).

This basic decision, as you've found, is to decide between surgery and ADT plus radiation. What I did was schedule a conference with the radiation oncologist, and the surgical oncologist. Both are very respected in their fields. I specifically asked them to give a complete, as neutral as they can, overview of their specialty and to tell me the pros and cons. Each sessions was about an hour and a half. They each, of course, were biased to their own approach, but both did admit that each approach was equally effective. My oncologist confirmed this.

I chose radiation and ABT for two reasons. One, there is less chance for urinary leakage. Two, with surgery there is a fair chance that you will eventually also have to have radiation and perhaps ADT.

For me, I think the decision was a good one. I've had zero urinary leakage and my cancer went into remission for five years. Unfortunately, it came out of remission last year and spread to my lungs, but I believe this would have eventually happened with a gleason score of 9, no matter which approach I chose.

So, my advice to you is to get a thorough review of the pros and cons of each approach as they apply to your specific situation and then make your decision.

Whatever you decide, best of luck and keep us informed.

Tom

I chose radiation and ADT since at my age, full recovery for incontinence after surgery is not as certain for someone younger.

I had 5 weeks of IMRT (photon) and just finished on Tuesday. There is no free lunch in the sense that side effects started in week 2 which made going for treatments a bit of a challenge. I lost the ability to tell if I had to urinate or not. It felt urgent 24 hours a day.

I had BPH issues before starting treatments getting up 3-4 times a night. for over 10 years. Now it is every 15 minutes most of the night. Daytime is not much better. Was told RT can increase your prostate size which is why the volume is so low - sometimes a tablespoon.

Lucky if I get one 45 minute period of sleep. No fatigue but this has completely disrupted my sleep schedule. Many days I'm in bed by 6:30 but get up at 1:00am.

Also had horrific diarrhea - probably 5 days but 6+ times in 90 minutes each day. I lost 8 pounds the first two times in the same week..

You are kind of led to think you can go about your life as normal including going to work. Luckily I'm retired. No way I could go to a job.

Doctor said at least two weeks before I will likely see improvement. At least I don't have to drive 25 minutes everyday feeling uncomfortable.

I was diagnosed last April, PSA 7.15, Gleason 8, confined to prostate. Urologist pushed radiation and hormones, said sex was pretty much over. I’m 74, still active. Oncologist said 28 radiations plus 6 months hormones recommended but it was my decision. I finished radiation about 90 days ago, PSA 1.4, very few side effects, everything back to normal. So many opinions and information, everyone different, personal decision for each of us.

@jeffmarc Is the conversation about proctitis or prostatitis? (Flomax?)

At age 59 I was diagnosed with a Gleason 4+4. My urologist sent me to both a radiation oncologist and a surgeon. I listened to both and asked questions to get an understanding of the process and side effects afterwards. I chose to have the surgery as that would leave radiation as a possibility down the road. Post surgery I did require radiation as the cancer had spread to lymph nodes and the surgeon did not have clear margins. It is a very personal decision to make, each case is different. Whatever choice you make is a good choice.
There is tons of great information available on this forum to help you.

There may be a third option besides surgery and radiation: active surveillance.

Depending on your age, overall health, the percentage of Gleason pattern 3 versus pattern 4 in your biopsy, and other risk factors—including the results of a genomic test such as Oncotype DX GPS, which helps assess the biological aggressiveness of the tumor—you may be a candidate for active surveillance rather than immediate definitive treatment.

I, too, had a Gleason score of 3+4 and was hoping to qualify for active surveillance. Unfortunately, that hope was dashed when my GPS score came back at 47, indicating high-risk tumor biology.

I then carefully weighed surgery against radiation. Ultimately, I chose surgery primarily because I was concerned that radiation could significantly worsen my pre-existing urinary symptoms caused by an enlarged prostate (BPH).

My point is that treatment decisions should be individualized, taking into account not only the cancer's characteristics and aggressiveness, but also your age, your existing medical conditions, potential treatment side effects, and quality-of-life priorities.

@brianjarvis
Well I guess proctitis since prostatitis Was not mentioned by anybody.

Besides that fact, however, I was talking about cystitis in my comments, not proctitis.

I should’ve said I know people that have problems with proctitis while they are having radiation, I know many cases where they had diarrhea and had to stay near a toilet because it was nonstop at some point during radiation. A friend of my brothers had to stop going for radiation one day a week because it was affecting him so much.

@brianmcl My proctitis started near the end of radiation and progressed to full blown soaking bleeding at 10 months. My enteritis started a month or so after radiation. What a mess is all I can say. Got my proctitis cauterized and eneteritis was treated with Mesalamine for 90 days.

Hello,
So sorry to hear about your diagnosis. It is now an easy decision to make. A couple of questions.

What is your age?
Do you have other medical problems?
Did you have a biopsy, if so was perineural invasion present?
Is cribriform present?

If possible, I recommend you purchase the book... Dr. Patrick Walsh's Guide to Surviving Prostate Cancer also

When I was 71 (6 years ago) I was diagnosed with Gleason 9 (4 + 5) and chose radiation and hormone therapy over surgery, primarily because it has a lower incidence of urinary leakage. Plus, there was a good possibility I would need radiation anyway after surgery. Also, both the radiation oncologist and surgery oncologist said that the success rate was equal for both approaches. I've had no urinary leakage and urinary symptoms did not worsen. I was good for 5 years when the cancer came back and metastasized to my lungs, which would have probably happened with either approach.

Here's wishing you good results going forward!