My 12 Year Update

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Swingshiftworker
Swingshiftworker Member Posts: 1,017 Member
edited March 2023 in Prostate Cancer #1

It's been about 6 years since I was last on and thought I'd provide an update of my progress.

I was diagnosed with low grade prostate cancer in Jan 2010 (Gleason 6, PSA 4) that probably wouldn't even be treated but just subject to "active surveillenace" now.

After doing some research on the available options, I was one of the early adopters of CyberKnife radiation treatment which I received in September 2010 at the UCSF Medical Center.

There was a concerning bump in my PSA level after 1 year but that scare passed and my PSA level has dropped consistently since then seems to have leveled over the past 2 years at 0.059 and 0.058. So, I may have finally reached a nadir.

One of the reasons that I chose CyberKnife (which was the most precise method of radiation delivery available at that time -- and still may be) was because of the promise that I would not suffer ED and incontinence so common following surgical removal of the prostate. Brachiotherapy was also an option available to me but I didn't like the idea of those radioactive beads sitting forever in my prostate, as well as because of the possibility of ED, incontinence and collateral tissue damage associated with them.

I have never had any incontinence following Cyberknife treatment. I did have a urinary frequency problem before the treatment which continued afterward. I was prescribed a variety of meds, including Flowmax, which were designed to treat BPH but it turned out that I never had BPH . It took me 10 years to find that out, when I was finally prescribed Mybetriq to treat what was diagnosed as simply an "overactive bladder. The Mybetriq is working well for me and I stopped taking Flomax a year ago.

However, one of the side benefits of the incorrect BPH diagnosis was that I was also allowed to receive a regular prescription of daily 5mg cialis (tadafil) to also treat it. There was a constant fight w/my insurer (United Health) to get it approved because it's normally prescribed for ED but eventually no further appeals were required and the prescription was routinely renewed.

When I started taking daily cialis, I don't think I really needed to take it because I was still able to get it up normally but, over time, I do think the daily cialis helped to prevent ED from being noticed.

Unfortunately, whether due to age or possiblly the Cyberknife treatment or a self induced injuary caused by use of a vacuum tube device, about 2 years ago the daily cialis stopped working well and about 6 months ago it stopped working entirely and I stopped taking cialis too.

So, not one to just sit on his hands, as I did for prostate cancer, I did some research and discovered (or more accurately, was reminded of) penile implants -- aka an "inflatable penile prothessis" (IPP)-- as a remedey for ED and I just had one implanted in me 4 wks ago on Jan 24th.

The surgery went well and I've already been approved to have sex and engage in other physical activity again but I'm still healing and recovering and, like any surgery, I don't expect to be fully "myself" again for at least 6-12 months but the worst of it has past and (at least for me) it wasn't all that"bad;" just some discomfort and soreness that I still feel but nothing that I'd call "pain."

Getting old sucks but at least I can now still "get it up" and still "feel like a man" even if I don't have anyone to use it with (which I don't at the moment) but that's ok.

As for prostate cancer, there are many treatment choices that have to be made before deciding what kind of IPP to get. So, if there's anyone who has become impotent following his prostate cancer treatment and would like someone to talk to about it, feel free to contact me by PM.

I don't plan on logging in here regularly (this was a one-off post update) but I am still logging in regularly in the Implants Forum on Frank Talk where you'll find me under the user name: sgt1372. So, I'd suggest anyone who want to chat w/me do so there instead of here.

This is where you can find it: https://www.franktalk.org/phpBB3/viewforum.php?f=6&sid=462550a60e124d3d9ad1489b326d373f

You'll also find various info about IPPs there as well but it's disorganized and in some respects scary and off-putting because, as with prostate cancer, the people who post the most often are those who have the greatest concerns and problems. However, I'd be happy to provide anyone who asks w/a greater context and broader perspective.

Best wishes and good luck to everyone!

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,054 Member
    edited February 2023 #2
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    Hi,

    Glad for the update on your Cyberknife treatment for Pca. Whether it’s surgery or some form of radiation treatment there can be some degree of side effects from almost none to severe. No two cases are the same due to various facts about each particular case,age,location of tumor, pre-existing conditions. To your comment about people who post on this forum “who have the greatest concerns and problems” I don’t agree. The reason I post here is to offer first hand info on my particular experience and try and offer a calm and logical approach to their past or upcoming treatment plans based on my treatment path and others who comment here. In my humble non medical opinion its alway good to bounce ideas off of a person that has been there, done that to get their prospective. When you have done your homework I think it helps in the decision making process that only each patient came make based on their set of circumstances. Please continue to update here with your case so others can learn and make informed decisions.

    Dave 3+4

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited February 2023 #3
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    Thanks for your comments, Dave.

    I hope this long term update will be useful to those who have recently received a prostate cancer diagnosis or those who have recently been treated for prostate cancer but are now suffering from ED as a result.

    I spent 6 years on this site following my CyberKnife treatment, which far longer than I expected to remain on the site. I just thought this would be good time to post this update here because of my recent IPP/ED treatment.

    I don't plan to provide further updates regarding my prostate cancer or ED status here until perhaps another 5 to 10 years further out to give a truly long term perspective on both.

    I'll check in here for a month or so to see if there are any further comments to my 12 yr update but after than anyone who wants to contact me should do so on Frank Talk where I expect to check in daily for at least the next 6 months.

  • lighterwood67
    lighterwood67 Member Posts: 382 Member
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    I had a RP in March of 2018; Gleason 4+3; As of now my PSA is <.04 ng/ml; I am continent; I am intimate with my wife. I enjoy reading about the different approaches to PCa treatment and their side effects. Good luck on your journey.

  • centralPA
    centralPA Member Posts: 292 Member
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    Thx for the data point. I really appreciate the long term stories. No substitute for hearing from the horse's mouth.

  • VascodaGama
    VascodaGama Member Posts: 3,676 Member
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    Welcome back. Great of knowing you are doing well, managed remission and got cured. Congratulations.

  • Old Salt
    Old Salt Member Posts: 1,380 Member
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    Thanks for the update. I do remember your contributions from way back.

    With respect to the IPP, we hardly ever hear about that device on this forum so any news you can provide would be welcome. I do wish that the implant will perform as promised.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited March 2023 #8
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    So, it's been about a month since I started this thread and I'm ready to "sign off" until the next time I check in (should I live so long) in another 3 and/or 8 years to post a 15 and/or 20 year update.

    In the meantime, if there is any interest in an inflatable penile prosthesis (IPP) among those who have suffered ED as a result of PCa treatment, let me give you an quick overview of what's currently available.

    There are only 2 brands of IPPs currently available in the US. The Boston Scientific AMS 700 and the Coloplast Titan Touch. Older versions of these IPPs are still available and in use but these are the current models.

    There are also only 3 methods of penile implanation currently in use: 1) infrapublic which involves an incision slightly above the base of the penis, 2) penoscrotal which involves an incision below the penis at the intersection with the scrotum and 3) subcoronal which involves an incision at the base of the glans but is normally only used with/for men w/Peryonie's disease.

    As w/PCa, men can and will debate the merits of each brand of IPP and method of implanation and there's no good reason to engage in such a debate here.

    I will simply say that I had an infrapubic implant of the Titan Touch and that the incision was fully healed and I was approved to have sex and engage in other activities again in only 3 wks.

    If you're interested, please take the time to research brand/method of implanation for yourself and to join the Frank Talk Forum on Implants to find out more from men who have had an IPP implanted in them.

    If you join FT and have any specific questions for me, feel free to leave me a PM there (where I'm registered as "sgt1372") thru May 2023, which is when my final postop appt is scheduled w/my IPP surgeon and when I expect to stop frequenting that website.

    Good luck & best wishes to all!

  • lighterwood67
    lighterwood67 Member Posts: 382 Member
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    Well, good luck on your journey. Certainly interesting data. Look forward to reading your next comments. For sure, contributes to this site.

  • mstoriop
    mstoriop Member Posts: 43 Member
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    Hello Swing. Very nice to hear from you after a long time. I am glad you are doing well. You were a very big help to me when I chose Cyberknife 6 years ago. Like you I have been very blessed and lucky with recovery. Thank you very much for your efforts and help back then to me and many others. Best regards and good luck going forward.