Newly diagnosed: Just diagnosed with... - Prostate Cancer A...

Prostate Cancer And Gay Men
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Newly diagnosed

Skander123
Skander123

Just diagnosed with prostate cancer yesterday. Gleason score was 3+3=6 and with a PSA score of 5.15 Although #1 recommendation was active surveillance, was told that only radiation or RP was recommended as prostate was too enlarged for seeding to be used. My Urologist did not recommend (or do) Da Vinci surgery and prefers laparoscopic surgery instead. My husband and I wanted to reach out to this community for support, for input about your experiences.

16 Replies
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Good morning Skander,

Stop the bus! I had RP in 2011 and regret it to this day! Incontinence is not so much of an issue, but ED and a less than satisfying organism has become my fate. Results are different for everyone. The point is this. Surgeons are like sales people. Their product is surgery. Therefore, they will recommend what they offer to generate more income. Do your homework, shop around and consult various experts on the matter. Don’t feel rushed to make a decision because the option you choose will change your life forever. If the physician you’re speaking with does not perform this or that, speak with someone who does. The point is to get 2nd, 3rd, 4th and even 5th opinions if necessary to be 💯% certain your decision is the right decision for you!

Thanks so much Will and I agree. I just had a very good friend in Chattanooga that had a 4+3=7 score so he went for the Da Vinci RP. His father had also died from PC. I do not plan to make any hasty decisions. I'm thinking AS and BPH drugs to shrink the prostate may be my first plan of action.

How old are u????

You have been misinformed. AS is the preferred option for someone in your situation. The decision for AS has NOTHING at all to do with how large your prostate is (there are many cures other than seeds). In fact, PSA density ≤ 0.15 (PSA divided by prostate size) is an indication FOR AS - so bigger prostates have lower PSA density.

You may consider taking Proscar or Avodart to shrink your prostate over several months. It will help you pee better. It also seems to shrink the prostate cancer - about half the men on AS who use it could find no evidence of PC on a follow up biopsy. Afterwards, you can have seeds. But over half the men on AS are able to stay on it for 20 years (so far) without progression.

If you ever need treatment, other good options include SBRT and HDR brachytherapy (neither has prostate size limits).

Results from laparoscopic, robotic, and open surgery are about the same. What matters is the experience of the surgeon.

Thanks so much. After researching, I already had the question in mind as to whether I could take the Proscar to shrink the prostate while on AS.

This brings back memories of 9 months ago when I was faced with a similar set of alarming data. First I did the basics of getting second opinions . I got opinions from Memorial Sloan Kettering in NYC and Robert Wood Johnson in NJ, both are regarded as leaders in this field. At both places I had surgical and non surgical options, my prostate was enlarged so would have had to be shrunk via medication for a few months before a non surgical solution, the side effects sounded nasty. Both institutions recommended Da Vinci as the infected area of my prostate was very limited and on the non nerve side. I was also told that surgery would probably be needed one day and is more difficult after certain other procedures. So without saying I did the right thing I went for DaVinci at MSK with a surgeon who has done over a thousand software these procedures. Was I right? Who knows and c it's too late now! I am feeling great and making wonderful progress 7 months after the surgery. So all I can say is talk to as many experts as you can to get the best solution for you. Ultimately it's your difficult decision. Stay strong, there is life beyond.

Thank you. Was your Gleason score more than 6?

My Gleeson was 7. My main point was that I had 2 biopsies over 6 months and the area infected was very specific and the location was as good as it gets. Leaving it would have risked spreading and more challenge inng surgery.

Skander. You are getting great info here. I was diagnosed 3+3 last December and given the same options after biopsy, with an emphasis on monitoring. On flomax now and recently had more thorough biopsy at UCLA by Dr Marks also encourages a monitoring rather than rushing to other more aggressive options (which btw is old school). The latest results show a 7 in One area only. Now waiting for results of genome testing. Just my 2 cents.

Thank you. I do have plans on seeing a particular specialist in Chattanooga, TN and another at Vanderbilt Hospital in Nashville.

NashTim
NashTim
in reply to Skander123

I saw Dr Cookson at Vanderbilt, he was head of Urology and when he retired he hand picked his replacement, Dr Matt Resnick and he is who I see now, I have been on AS for several years now, I have nothing to compare it with but listening to these guys on here, I sure am glad I am on AS. I don't know if you can ask for a specific doctor or not but see if you can get him......the guys on here all seem like they know what they are talking about so...…

take your time! accumulate and process the great advice on this site

and...good luck

Hidden
Hidden

Hi Skander. You have had lots of good advice on this. Maybe too much, you may be overcomplicating it.

Basically if you go for surgery you need to get the best surgeon you can, and it sounds like you're doing that.

At Gleason 6 it seems dodgy to to stay on AS for any length of time, but as the other guys say, you have time to weigh up all pros and cons.

Whatever technique your chosen surgeon uses, just make sure they've done it A LOT of times. See also if you can see their success statistics.

The dreaded fear of surgery, you said this yourself, is ED.

There are several things that affect ED after surgery.

The first is your erectile function BEFORE surgery. As someone once asked me, "Can I have sex after my surgery?" I said "Yes it's possible." He said, " Good, I couldn't before."

NO, how good it is after, depends very much on how it is before. There is a scale you can use to measure this. I can't think what it's called just now.

The second factor is the surgical procedure and the skill of the surgeon. This is a BIGGY!

Third is what erectile rehabilitation measures you take after surgery starting ideally, immediately after the catheter is removed. It will take a while to get full function back so don't expect immediate results. You may get some spontaneous "fluttering" early on, but don't stop the rehabilitation measures.

You need to discuss with your husband how this might affect you both. Despite knowing about the cause of the ED he may feel you don't love him anymore.

Please note the nerves enabling your erections are NOT the same that enable orgasms. Even with ED you can still have orgasms. I presume you already know that your prostate gland is your G spot and things won't feel the same when it's gone. I'm hetero, but I noticed the difference.

Just to reassure you, prostatectomy does not inevitably lead to permanent impotence. Take control, find out all you can, act on it and keep Bill involved and informed.

Good luck.

Hidden
Hidden

Sorry, it's Will, not Bill

And for goodness sakes, now that two beautiful new ED devices are available -- Giddy and Xialla, which, fortuitously, can be used simultaneously -- try them out! Cost: $150. They should help enormously with penile rehab.

Or you can make and try out my Loop device for free. Let me know if you want instructions.

May you find a great surgeon if that is your path! Lots of great advice here.

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