Totally Scared...

[RMHFlorida]

I am a 68 year old gay male who has just found out through lab-work that I have elevated PSA 3+4... This led to many more tests and now I'll be doing a full body bone scan and the aa CT Scan... after that radiation... TOTALY SCARED!

[Tall_Allen]

This is the best explanation I've seen:nccn.org/patients/guideline...

I think you meant your Gleason score is 3+4. You didn't say how many positive cores or what your PSA is. But your risk level is probably "favorable intermediate risk." That is (relatively) good news because any of the major therapies can cure you.

First, take your time. Some men with GS3+4 even go on active surveillance, safely going many years without treatment. You didn't provide enough info for me to say if that is a good option for you. If you can afford $300, get a second opinion from Epstein at Johns Hopkins. Just tell your Urologist who did the biopsy to send the slides to Epstein - it's a very common thing to do:

pathology.jhu.edu/departmen...

Your urologist has probably already recommended surgery. As a gay man, I think there are much better options for you.

If you are in central Florida, talk to Debra Freeman in Tampa about SBRT. Also, Matthew Biaggioli in Orlando about high dose rate brachytherapy.

You have plenty of time to decide on your next step.

[jimreilly in reply to Tall_Allen]

listen to Tall Allen--he knows a hell of a lot--and remember, as he says, you have plenty of time to make up your mind what to do--I was in a similar situation at age 64 and did watchful waiting for several years before having treatment, with no apparent harm done by the waiting. Although I did not know about this group at the time, wish I had. I did decide on surgery--might not have if I had known more. But I'm OK, still no cancer detectable at 77 and leading a decent enough life so I've since survived two new knees, a broken leg from getting hit by a van, a few other things, and now rotator cuff surgery! Lol, such are the pleasures of continuing to live cancer free!

[Leeaussie5]

Hi RMH

When you first find out is the really scary part of the process.

Good news as the other will have told you is that it is almost certainly not life threatening in the medium term.

If you look around you can take better control than your fear is now telling you. There are several ways you can take control.

The first thing I did was look at all the information I could on the net.

MSKCC has nomograms

mskcc.org/nomograms/prostate.

You put in your data and it gives you a risk analysis. When you see how the likelihood of this thing to kill you, then you can make informed decisions about the next step.

If there is a 1% chance it will kill you in the next 15 years, then you can concentrate on options that maximise the joy of the next 15 years (with a 99% chance you'll be alive after that!).

The more you know the better questions you can ask your doctors.

The other thing to consider is getting a counsellor. I nearly came apart at this stage of my disease. A counsellor helped. Your mind and the power you feel is an important part of getting through this.

all the best

[Ram17]

First thing you need to do is Stop, and take a few deep breaths. Yes, this is scary as all get out but in the end more men die with prostate cancer than FROM it. Don't just jump into making a decision until you do enough research so you can make an informed decision you can live with. CT and bone scans are a normal diagnostic tool to help determine the extent of the cancer and then to guide a decision on treatment.

There are many therapies that are available to treat this. Some are focal and treat just the tumor. Some are more widespread like external beam radiation which kills the whole prostate or surgery that removes the entire prostate. See what treatments are available in your area. Deciding on a treatment that you can't get to will not do you any good. Look into the long term side effects as well as the immediate ones. I feel that in the long run, they are all pretty much the same.

I was diagnosed at 59. 4 years later, I still think I made the right choice with the facts we had at the time to go with robotic surgery. Radiation just gave me the creeps. Using the radiation to kill my prostate and then letting it slowly dissolve just freaks me out. Some people are fine with this. It really depends on what you can handle mentally. In the end, the only function I have truly lost after the surgery was the ability to ejaculate and at my age who needs the mess.

Sex is still available with a little help. Since my sex life is a solo activity these days things are okay. I still have great orgasms even when soft. After time my erections are returning with a fair amount of work. Cialis really helps. A simple shot of bi-mix gives me a great erection that lasts for several hours, even after orgasm.

Remember that this is about you. Get several opinions on different treatments keeping in mind that each doctor will normally recommend their specialty. This is not about them, but about you. One thing I highly recommend is going to YouTube and looking up a guy named Jimmy Charles. He has 3 songs you need to listen too, "Superman", We Are Warriors" and "You Are Not Alone". Keep tissues handy.

Take care and feel free to message me if you other questions I might be able to help with.

[RMHFlorida in reply to Ram17]

Thank you so much for replying and sharing your thoughts... you have given me alot to think about and some to research... I am finding over time I am coming to terms with alot of this due to caring people like yourself willing to share experiences...

[Ram17 in reply to RMHFlorida]

As things move along, if you have questions, feel free to ask me. I am no doctor but I have been around the block. Been there, done that, got the tee shirt type of thing.

I see you live in Florida. I call Austin, Texas home but I travel a lot for work. If you would like to talk, just drop me a message and I will gladly share my phone number and experiences. I am available most evenings. Just keep in mind that nothing embarrasses me, so anything and everything is able to be talked about. It just depends on your concerns and what you are comfortable with talking about.

Take care and good luck in your journey.

[nacinla]

It's OK to be a little scared and to use that as the energy behind your focus in finding the best solution for you. You've come to the right place (here), for starters. Lots of good comments. As others have said, there's no rush. Do not be intimidated by doctors, especially surgeons. As the expression goes, "When all you have is a hammer, everything looks like a nail." Except my experience was that I found a urologist/surgeon who said either radiation or surgery would be effective for me — and radiologists were generally more openminded than the surgeons I talked to. The first urologist I talked to tried to pressure me into surgery. Some time later (years), I sw him on a late night commercial hawking HiFu — presumably he was pressuring his new patients to do that because he had to pay for all that expensive equipment at his expensive surgical facility in Beverly Hills. About me: My Gleason score was 3+4, T1, favorable intermediate risk, PSA 5.3 before surgery (maxed at 6.0). I was about two weeks from having surgery after having spoken with a (straight) high school friend who had a favorable experience with surgery. Then I got into the LA Prostate Cancer group and with Tall Allen's help, looked at the options and visited more doctors. I opted for SBRT. I must respectfully differ with one comment here that all the side effects are the same. They are not, especially as they relate to incontinence and ED. You can research that yourself. Because of my work situation, and hearing people talk about the pads they were going through in a single day, that was a strike against surgery. I could not be standing in front of a corporate training session and piss my pants. Also, I was not interested in a sporting a catheter for a week or so post-surgery — I wanted to go to the gym — and I was able to do that because my treatments were a breeze: 15-20 minutes on a table every other day over 10 days for a total of five treatments. I did have some rectal discomfort and three episodes of bleeding but the former went away literally over night and the latter was attributed to the blood thinners I take and hasn't occurred in years. Radiation was not creepy at all. In fact, the Star Wars-like equipment used made it an adventure; I even recorded my last treatment session to share with guys in my group. I am now seven years out and my PSA is <0.1 (Quest does not report two-digit scores, so I'll be going out to UCLA for my next test). This is about as low as it goes with radiation. Yes; you have to be patient waiting for the radiation to do its work over time; I considered that because I'm not a process guy, I usually want a result right away. But I had been HIV-positive since 1984 or 1983, so I figured if I had endured that, I could see this through. As I've posted elsewhere, I know people who had surgery and reported no issues; I know of one death after a combined SBRT+med treatment plan in a guy whose situation was highly unusual but it's likely surgery would not have saved him anyway. And I know what I see on these boards reported anecdotally. So good luck with your search. Again, Tall Allen knows more than many doctors; you should avail yourself of his vast knowledge. And if you'd like to talk by phone, I'm also available. --Nick

[RMHFlorida]

Hi Nick - Thank you so much for taking the time to tell me about your experience, I actually felt pretty encouraged after reading your post... I have decided on the radiation and Lupron injections mostly because I am the type person who is going to try anything/everything else before I ever resort to surgery... So I was especially encouraged with your words on the radiation... I go in for the full body bone scan and CT scan in a couple of days and then we will begin the radiation, so I don't really know at this point how many/how often I'll be having radiation treatments but I have researched it and is appears that each session is about 15 minutes long... Thank you so much for sharing,,. Robbie