Hello to all from someone with RP, ADT, and IMRT

[wallygator]

I just wanted to introduce myself. I was diagnosed with prostate cancer in February of 2016 when my PSA rose to 10.6. I was GS 7 (4+3) and aggressive treatment was recommended. I chose RP and had surgery in April '16. The pathology report showed an extra-prostatic extension, but negative margins and negative lymph nodes. My PSA was undetectable. The surgeon declared me "cured" and I was very relieved. Unfortunately, I experienced a BCR (.05) in April '17. I was devastated as I truly believed that my cancer was gone. I was assigned to a radiation oncologist and received 6 weeks of ADT (Lupron and bicalutamide) prior to 40 radiation treatments. I opted to stay on ADT until April of 2018 as I found studies that showed slightly better outcomes with extended ADT. It has been 18 months since the end of ADT and I am still undetectable.

Here are some personal observations. The RP knocked me back a little more than I expected. I was pretty miserable for about a month. I found it uncomfortable to sit long. I did not experience significant incontinence, but I was unable to obtain an erection. The ADT did away with any sexual desire and reinforced the ED. About six months after cessation of the ADT, my libido started to return and then, out of the blue, I woke up with a morning erection. My erections are pretty normal now (but I would swear that my penis is shorter, does that happen?). I don't really have any incontinence to deal with. I have a rare small leak, usually with exertion or an unusual movement. (I have to be extra careful when passing gas. ) Of course, all my orgasms are "dry", but satisfying.

I guess I am luckier than some and I get more and more confident with every undetectable PSA test. I appreciate being able to compare notes with all of you. Best wishes to all.

Wally

[Tall_Allen]

Try pumping every day to get back some of the size loss.

[Handdrummer777 in reply to Tall_Allen]

I didn't know that size loss can be reversed to a degree with the pump. I'm careful, in all my device-waving, not to make a claim like that. Hope it works for some guys.

I just want every guy with ED of any degree, especially those in these groups who need them the most, to use one or more of the three devices.

I'm surprised at the apathy of interest in my Loop, considering the need. I guess guys are cynical, over-cautious from being disappointed before, etc etc.

Oh well. Let's see what kind of reactions we get from Giddy and Xialla users. And, you really CAN use two or even all three devices together!

Thank you for helping so many of these guys find answers, and the right questions to ask.

You are a true public servant.

Make it so, #1.

[Leeaussie5]

Good to know it looks like a good final outcome. All the best

[Cubbiesfan]

Sorry, I’ve never come across the initials, BCR. Can you tell me what that means?

[Tall_Allen in reply to Cubbiesfan]

BCR=Biochemical Recurrence (it means PSA continued to rise above a certain level after treatment).

[Hidden]

Good lucky to you Wally. It sounds like, as things go with us pc cancer victims, you are doing fairly well. Yes, it is true. Most guys do lose length after the RP, Lupron and radiation. I know I did. Also, you are very fortunate to be pretty much continent. After 2.5 years I am still very much incontinent but have learned to live with it. Kegels did not work for me. I even went to a rehab specialist for weeks. I too have great orgasms even without a rigid penis. Thick towels are needed though. with all the urine. Hoping your good luck continues, my friend!

[EdinBmore]

To respond to one of the issues mentioned in your post: Yes, genital shrinkage is a common side effect of Lupron (just add it to the list of other fun things). One inch shorter and less girth are common (for the average man, that's a lot, methinks). Alas, as far as I know, this is a permanent change (if anyone knows of any research saying something different, please share with the group).

I'm in a "Restore" study at U of MN whose goal is to help gay men deal with/regain sexual issues/function in all its forms. They provide sildenafil and pumps at no cost. And, there are many videos dealing with all kinds of sexual issues. As far as the pump goes, I use one. It helps with the erection but I think I'm stuck with a small dick. And, for me, the orgasms occur but are so different and unsatisfying that it feels like it's hardly worth the effort. Oh, and did I mention that Lupron also kills one's sex drive. Poof. Gone. Nada. Zip. Zilch.

This, combined with Lupron's other side effects, has been a real bummer: depression, despair, crying spells, change in self image and so on.

Btw, 1 mo Fimagon, 9 mos Lupron. Last injection was early May. I thought I'd be feeling more "normal" by now but apparently it can take 6-9 mos to regain one's "manliness." I'm still waiting. LOL

Good luck to you,

EdinBaltimore

[wallygator in reply to EdinBmore]

Yes, ADT wipes out all desire (and ability) to have sex. It also can trigger a heart attack. I know because I suffered a heart attack six weeks into ADT. Then I found out that there is an increased risk of heart attack during the first six months of ADT. It would have been helpful if they had told me that.

[EdinBmore in reply to wallygator]

Good grief! Sorry to read that. Didn't know about THAT side effect!! Yikes.

[Palaguy in reply to EdinBmore]

I think I might be happy if my shrinkage were only 1 inch, I have lost just over 2 inches WHEN erect. Never even bothered to check the loss in girth. I have only looked at myself naked in a mirror twice since my treatments started 18 months ago, I have 1 treatment left. I have been in remission since April 2019. My husband and I haven't had sex since Jan. of last year. My orgasms are so weak I don't even care if I have one.

[EdinBmore]

Trust me, you're not alone and I understand. A real bummer. Hopefully, one day, men will look back and wonder how (and why) treatment often had such devastating side effects - on one's physical, emotional, and sexual self. ADT will be considered a medieval form of "treatment." For now, we go with the flow..so to speak.

Good luck to you.

EdinBaltimore