A year ago I posted about a new nerve grafting technique developed in Melbourne to address erectile dysfunction experienced after RP, as decribed in a 2019 paper available at doi.org/10.1016/j.eururo.20.... Set out below is an update with some amazing new information that has not yet been published - please excuse my very long post but this is really exciting stuff, and comes as welcome good news at a time when there seems to be mainly doom and gloom out there.
Some might recall my plan had been to have the surgery whilst recovering from ADT undertaken together with eSRT after BCR following RRP - briefly:
Dec 2017 - RRP - pT3b, with micro PSA undetectable six weeks after surgery
May 2018 - micro PSA recurrence
Sep 2018 - commenced Care Oncology protocol, with PSA at ca. 0.04
Dec 2018 - undetectable on PSMA scan, with PSA at 0.09
Jan 2019 - commenced goserelin and zytiga/pred at PSA 0.1
Feb - Mar 2019 - eSRT - 66Gy
Aug 2019 discontinued zytiga after 8 months due to severe side effects
Oct 2019 - final 3 month goserelin shot; consultation re sural nerve regraft
Aug 2020 - PSMA scan remains clear; PSA undetectable; Testosterone back to ca. 15% of initial value
Dec 2020 - PSA remains undetectable; Testosterone back to ca. 80% of initial value (currently 335ng/dL); still continuing on Care Oncology protocol
At my Oct 2019 consultation re the nerve grafting I learned they had operated on ca. 70 men but not on anyone who had undergone ADT or radiation. The key concern was that radiation-induced scarring might produce permanent leakage in the cavernosal tissue that would not be overcome even in the presence of strong arterial re-charge. However, it was agreed that I would have a penile ulstrasound to check for leakage, using Trimix... this was scheduled for February 2020.... then covid-19 hit and the US stopped supplying one of the key ingredients of Trimix to Australia until July... and by that time, Melbourne was locked down to try and deal with covid...
Fast forward to November and Melbourne is covid-free (no local transmission for the last 56 days!!) and Trimix is flowing again... so I had the penile ultrasound, and learned that a lot had changed in the last year.
The big news is that the operation has now been performed on several men who have had radiation and at least one of them has already begun to experience erectile success, indicating that radiation damage to the cavernosal tissue has not been enough to kill "natural" erectile function.
The fact that radiation need not necessarily permanently impair cavernosal function seems to have kicked off a whole new direction of investigation for the team, who think they may now be able to target men whose ED has been brought on by radiation treatment as opposed to just RP, provided it has been caused by radiation damage to the nerves as opposed to the cavernosal tissue. The nerves can be replaced by the same shunt regrafting that they have been employing for RP patients - as long as they can develop a reliable way of checking their cavernosal tissue functionality. The current approach consists of ulstrasound probing at around 200 points on the Trimix-erect penis and measuring the degree of veinous leakage after the arterial charge that takes place every heart beat - it sounds complicated, but the ultrasonic measurement is pretty straightforward and instantaneous. In a "normal" man, about 1 - 2% of the blood leaks back at any given point, and they believe that provided overall leakage is no more than around 5%, the operation can succeed. When radiation scarring is present, leakage is typically 20%, and of course if there has been a history of erectile problems due to, for example, cardiovascular issues, then there may not be a strong arterial recharge in the first place.
Well, the good news for me was that arterial flow was good, and leakage across the board was around 4% - lots of 2s and 3s, with only a couple of isolated 7s and 9s where scarring may have occurred...
So I am booked in to give this operation a shot on 1 February, and should know if it has worked about 6 - 10 months thereafter, once the nerves have grown down through the grafted "nerve tube" and into the cavernosal implantation.
Australia doesn't really allow advertising of medical procedures so uptake has been fairly slow, but there have already been a number of US and other international patients who have travelled to Melbourne to have it done - not possible since last March of course, since Australia's borders remain closed.
In terms of logistics, it's one night in hospital and they expect about two weeks of mild pain and discomfort, including reduced mobility for a week. Cost looks like being around A$15k (ca. US$10k) although I would expect government and insurance benefits to cover 30% of this.
The chances of success seem to be staying at around 70%, with some men still requiring a bit of PDE5 assist - but I imagine that most, like me, figure those are pretty good odds.
Needless to say, if I need to re-start ADT or have more radiation because the PCa rears its head, it will all have been a waste - and pls don't bother to bombard me with judgemental posts about sex being a very secondary consideration in the face of the life-threatening, existential nature of PCa - I get that, in spades. My Decipher score is 0.91 with a 48% chance of mets within 10 years so I fully grasp that my window of opportunity to enjoy this even if it works, may be brief. Beyond that, my PSMA scans turned up that I have a lung condition called IPF that I have now had confirmed... usually kills within 5 years, so I now have the joy of swallowing anti-fibrotics twice a day that are actually a lung cancer chemo drug and give me continual nausea... but WTF, we all have to die of something and I would prefer not to be subject to ED when gasping that last breath...
The Sci-Hub site that someone posted a year or two back works well with the link to the paper posted above. I believe the Melbourne team will be publishing a new paper some time next year - if there's anything exciting about the surgery I will post here again in February, otherwise not until the nerves have regrown, say by September 2021.
Stuart
What to do going forward post RP
PSMA scans and radiation of oligometastases
High NLR post RP. Is this indicative of recurrence or survival rates?
Continuing intermittent ADT? or more?
