Been on here for quite some time reading about other men’s stories but have yet to get in the trenches until now. Not sure why; maybe just reluctance to accept my situation, even though my “situation” has fully accepted me. It’s been a bumpy road. PSA 12.5 at diagnosis 11/2019. Been checking PSA for 10 years prior due to family history. Gleason 9 w/ seminal vesicle involvement and 5 positive nodes. Radical open prostatectomy w/ extended pelvic lymph node dissection 02/2020 at Mayo/Karnes. Lupron 03/2020 - present (ongoing). 39 sessions of radiation - whole pelvis / nodes with prostate bed boost 06/2020 - 07/2020. PSA undetectable. Aggressive approach for aggressive disease. Went for curative treatment. Recurrence in Spring of 2022. 6 cycles Docetaxel. PSA undetectable. Began Zytiga following conclusion of chemo. PSA <0.006 per Labcorp.
Just wanting to find support from people who have been through / going through similar situations. Never thought I’d be a guy who needs to lean on others for support, but here I am. It’s kind of strange actually. After reading here for the past few years it’s become clear to me that what I’m feeling is quite common, even though it’s uncommon for me. Every day is a mental struggle as to the “why me.” The worst part is the difficulties it has created for my wife. I want to feel normal. I want to be normal. Unfortunately, prostate cancer has take that away. The lack of intimacy for her has been virtually catastrophic, as prior to treatments we had an active sex life. Due to prostatectomy (even though nerve sparing), radiation and ongoing hormone therapy, I’m not having success in that department. We’ve tried all the meds - no help. Tried tri-mix - results excellent but the pain was unendurable, as was the duration. BiMix is tolerable but unable to get the dosing correct. Too little yields lackluster results. A tiny bit too much and I have a 6+ erection that is not at all pleasant. Looking into the inflatable implant, only to find out that my employer has a clause in their policy that excludes treatment of erectile dysfunction. I want to pull out what’s left of my hair as I feel like I’m driving in circles. Has anyone had success getting an IPP that was denied to be covered by their insurance?
Sorry for the long rambling post. I guess maybe I should have started posting when I joined some time ago, that way I wouldn’t have had to write a book all in one post…🤦🏻♂️
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MrWonderful4U
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It’s not easy staying intimate with the injections. The amount of planning is a real mood killer, for both of us. When it gives lackluster results due to not hitting just the right amount it’s even more frustrating. If I use just a bit too much the erection lasts for hours, and that’s not a good thing at my age. The additional issue is the lack of libido due to adt. Those two things make me feel like less of a man - the opposite of what she and I need.
I hear you - the ”why me” part is something I believe we all think about but have no answer to. I made a post recently about that which received so many fantastic replies, and if I was to try boiling them all down to a sentence it would be; to accept the situation, educate yourself and do everything possible to get the best treatment and most important - squeeze every bit of joy out of every day.
About the libido and ED problem while on ADT; if the lack of intimacy is catastrophic for your wife, please remember you can still have closeness, intimacy and sex without an erection. Why not make the most out of that - try everything you can do without an erection. Do it often and have fun doing so.
ED meds and injections require some planning, but again - make this into something positive; when you schedule sex you can turn the day leading up to it into one long foreplay with teasing, touching and lots of fun.
To enable more spontaneous sex with an erection; once you’ve found the dosage of Bimix that works for you, you can pre load syringes and keep them in the refrigerator - that way you can simply grab one when needed.
I feel for you and your wife. My husband struggled with the disease for 8 years. My husband could not get an erection, but I didn't care. I just wanted him with me. We found was to be close, snuggling , road trips, hugs.. It's a life changing disease and it is horrible. Stay strong
When I was newly diagnosed.....one day, I snuck into the master bedroom to be alone and got down on my knees. I placed my hands in a praying position and looked up at the ceiling and said "God, why me? Then suddenly a booming voice from above said "CAUSE YOU PISS ME OFF"...Well that was the end of that, but I did notice that the ceiling needed painting.....
Sex or lack of..... is all in the mind. You and the dear boss should be thankful that you're not room temperature. Live your life.......I don't think either of you married each other just for the hanky panky.......it was for "love", you know that other four letter word we use in the bedroom (the "fuck" one).
So if you can't adjust your penis (dick to most guys) then adjust other parts of your body and use them as alternatives....I don't wish to go into how, cause it might give me a heart attack...
While you're pulling out your hair save it for me....I can use plenty...
Thank you all for the messages and support. I was able to get the IPP approved through my insurance and had the surgery performed two weeks ago. I have to say that it is quite painful but the drugs help. Now for the new question for the group. Since chemo last year plus Zytiga my ultrasensitive PSA has been <.006 per LabCorp (which I’m guessing is the lowest assay they can read). I have the ultra sensitive PSA drawn monthly at Illinois Cancer Care and they send it out to LabCorp. Long story short, I had it drawn yesterday and the results came back as .012 so needless to say I’m concerned as it’s higher than what it’s been for 18 months. Should I be concerned? Could the surgery for an IPP cause a small elevation like that when I have no prostate? Naturally, with everything I’ve been through I’m kind of freaking out. I know that with that low of a PSA scans probably will not find it, but seeing the number elevate is freaking me out.
Following a prostatectomy, the most widely accepted definition of a recurrence is a confirmed PSA level of 0.2 ng/mL or higher. After radiation therapy, the most widely accepted definition is a PSA that rises from the lowest level (nadir) by 2.0 ng/mL or more. It’s important to try to always use the same lab for all of your PSA tests because PSA values can fluctuate somewhat from lab to lab.
Thank you for the response. Perhaps I was not clear with respect to my question - for that I apologize. I’m interested to know if there is a possibility for the PSA to increase by a very minor amount due to surgery to install an IPP, even without a prostate? My PSA through the same LabCorp branch has been shown as <0.006 for the last 18 months. I assume that is the lowest assay they have. I know that the cowpers glands as well as the urethral glands produce very small amounts of PSA. Is it possible to get a minor elevation in PSA as a result of getting an IPP? That surgery is quite invasive, no matter what anybody tells you…
Yeah, that’s kind of what I was thinking too. It’s difficult you know - I’ve felt like a ticking time bomb since I had recurrence and subsequent chemo followed by Zytiga, and am obsessing over my ultra sensitive PSA that I have drawn monthly. I feel like my own worst enemy, but then again, I’m an engineer (we tend to over analyze absolutely everything unfortunately).
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