Life changing journey...

[djacs]

I was diagnosed with BPH and ED during my early 50's. ED treatment with Viagra and Cialis were successful ONLY with the addition of a "cock ring" around the base of the penis or "strap" surrounding the genitals to restrict back-flow of blood needed for the erection. At 58 years old, I was diagnosed with prostate cancer and opted for surgery; part of my post-op treatment consisted of Viagra and Cialis to help maintain blood-flow and promote healing to the tissue traumatized by the robotic surgery. Fortunately, my VA medical coverage provided an inexpensive urethral suppository for ED called MUSE, a vasodilator (very expensive in open Rx market) which I discovered gave me erections to rival those of my youth... when using the "cock ring" and following the medication instructions correctly. I am now 69 years old and a recent national shortage of the MUSE Rx forced me to use the EDEX vasodilator injection, which also works well for me... with the addition of the "cock ring" to restrict back-flow of blood. Over the years since the surgery, I have progressed to the point of having erections without ED medication on occasion, allowing self-pleasuring... and I must thank my surgeon for "sparing" tissue, muscle and nerves during the "robotic" surgery which resulted in minimal concerns about incontinence. My Prostate Specific Ag, Serum has slowly risen during the 10 years since surgery to 0.4 and my urologist is monitoring the elevation. This journey has been a life changing event I would not wish on any man... I hope my sharing will give "HOPE" and "INSIGHT" where needed.

Report

[Tall_Allen]

It was a long time ago, but can you look up what your post-op pathology report said about Gleason score, positive margins, and extracapsular extension? Can you calculate the PSA doubling time using this tool:

mskcc.org/nomograms/prostat...

[djacs in reply to Tall_Allen]

Sorry but no. The surgeon, having a private practice did not forward any medical reports to my healthcare provider. It was my understanding that the computer systems were not compatible, which disappointed me greatly.

[Tall_Allen in reply to djacs]

Maybe you can ask him to email you a copy.

[djacs in reply to Tall_Allen]

Although many offices are closed due to COVID-19, I will certainly try and give you a reply soon.

[Tall_Allen in reply to djacs]

It's just that urologists and radiation oncologists don't always see eye-to-eye about this:

pcnrv.blogspot.com/2019/05/...

[JPnSD in reply to Tall_Allen]

Thank you for your posts here...and especially for this link and your summary. I had RP 8/2019..robotic..nerve sparing..Gleason 9 and clean sem.v. and micro Ca in one of 4 lymph nodes. PSA of .01 at 10 weeks. .05 at Jan and April 2020. Now watch and wait from Uro, MO and RO. No clear next step from any until levels change. So hard to sit and wait...and hope they are up-to-date. I really appreciate your contributions on here. They have been a source of info and support.

[Tall_Allen in reply to JPnSD]

FWIW, my opinion is that any cancer in any pelvic lymph node should be immediate cause for adjuvant radiation + long-term ADT, regardless of PSA. Lymph is a slow-moving fluid that can easily (albeit slowly) carry cancer cells around. I think it's a last-chance to get it all before the cancer escapes into systemic circulation. There is some controversy about whether it's still curable, but I think it may be based on this observational study by Touijer et al:

pcnrv.blogspot.com/2017/12/...

In that study, they waited for PSA≥0.2, but three-quarters of them also had ADT for over 3 years (median 6 years). I think that if treated earlier, it may be possible to limit adjuvant ADT to 2-3 years.