Hi all, I am in UK aged 56 and had PSA of 32 late 2014. After RP in Feb 2015, analysis slowed 3+4 T3aN0M0 with bladder neck invasion, negative margins. Initially PSA was undetectable, then 2.5 years later detectable PSA (moving up and down 0.03-0.06 since 2017). My latest reading is 0.076 and I am seeing oncologist soon about possible salvage radiotherapy. So I am wondering about questions to ask and any advice.
I had a sling fitted for incontinence in 2017, which is still occasionally irritable and leads to urinary retention and low flow, and I am concerned that RT will make this worse.
Also could a PSMA scan pick up anything at this low level (is it even available in UK)?
And I hear that improvements mean RT could be targeted at the prostate bed, and if that doesn't do it a wider area could be targeted later (missing the prostate bed), rather than doing a wider area to start with. Plus I read of a gel that can protect the bowel.
The standard seems to be start treatment at PSA 0.2 but I also read that it makes sense to start treatment at 0.1 as if you get to 0.1 you will almost certainly get to 0.2.
Also I see ADT (I think for 6 months before RT?) should improve outcomes.
Any thoughts would be most welcome - cheers Julian
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julianc
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There was no advantage to adjuvant ADT or salvage whole pelvic radiation when PSA is that low.
PSMA PET won't detect anything at your low PSA. It only would be useful to rule out distant metastases, which you almost certainly don't have.
Hydrogel spacers are only used for primary radiation, not salvage because they put extra space between the rectum and the prostate. You don't have a prostate anymore.
Many thanks Tall_Allen, your comments and link are very useful. I would be a lot happier moving forward (unless I get a psa drop next time) if I didn't have the ongoing urinary irritation / poor voiding. However I do have a cytoscopy to look forward too ...
In my case I take monthly tests alternating two labs. Last February there was a spike on both of them outside their expected range 0.15 and 0.12
During the following months both of them declined, something that hasn't happened before since my RP 2 years ago. First lab went 0.15 0.14 0.13, the other 0.12 0.12 0.11. My plan is to wait until 0.2 and take a PSMA PET CT before reccuring to eSRT
Yes, mine has been a journey of detectable but low for 3.5 years now. I try to watch my diet more than anything, which I have done well at, and use pomi-t. I read recently about mushrooms too, so make sure I keep my intake up (which has also enabled me to drop the vitamin d supplement)
Re vit. D3: I was taking 4kx7=28k IE per week for months that didn't raise it from my baseline of 30. Recently, I upped it to 10kx4=40k IE per week combining it with Omega 3 as I read here that fats aid the absorption of it. This did the trick and on the latest test went for the first time above 40. There is a very slim possibility that my recent PSA decline can be associated with the D3(25OH) serrum increase. You may check for the opposite, that is, whether your PSA increased during a period that you cut back on D3.
Thanks ... I am wondering if they may suggest it in case I need to sort out urinary problems beforehand (e.g. removal of sling). On balance I would not have had the sling, I was mildishly incontinent but there were times that were unpleasant. Did you get back to your normal self after the 3 months?
6 months later I'm 90 percent back to normal inasmuch as my sweating has less intensity and frequency and my overall energy, including potency; the 2 latter being a product of radiotherapy. Also, my mood swings have abated. My PSA is <0.01 6 months later.
We're all different and my decision to do radiotherapy was partly economic and partly due to my rather proactive aggressive approach to problems.
Good luck and follow the best advice and your best intuition. I've found that treating my disease is 80 percent medicine and 20 percent healing arts.
Thanks, its interesting how it does seem to take quite a while to get back to normal. I also had a very proactive attitude like you, but may have dialled it back a bit due to some of my experiences of surgery (RP, sling plus other fixes elsewhere). Good luck J
Hi - a quick update. I spoke to oncologist. He has booked a follow up appointment for mid Aug after next PSA test. He said there would be a PET scan, even at these PSA levels (standard process I suppose). So I asked about PSMA scan, he did say that could be arranged in London (5 hrs away). I think if I am having a scan I would travel to London for PSMA scan. If the scan detects anything (unlikely) then there is better targeting and adjuvant ADT can be used. Radiation area is prostate bed plus some of the surrounding area. I need to try and resolve the problem of the sling causing irritation, so I have a cystoscopy end July and will then ask urologist about options.
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My urologist after RT and ADT
Concerns about Salvage Radiation
PSA #’s elevated from sex (After ADT and RT)
The impact of salvage radiotherapy 
Stopping ADT During Salvage Radiation
