If the PSA value rises after salvage radiation you would usually start with hormone therapy at some point in time. If you are not worried you could wait until you have reached a PSA value of 10 ng/ml. Then you have no side effects until then. Usually your doctor will avoid a discussion and start with injections much earlier.
Your PSA is still very low. Some of those movements might be due to inflammations or irritations. I would not be concerned unless your PSA got to 1.0. Then you might consider casodex, zytiga or xtandi.
I don’t think inflammation or irritation can influence PSA after RP. I opted for more treatments when my post-RP PSA reached 0.06 because the doubling time approached 6 months. Waiting would have given my cancer time to grow and spread further.
Just letting you know up front -- Some guys on here don't want to hear anything that doesn't agree with their approach ... but we all make up our own minds just like they were free to do ...
First - In my opinion (and it is only an opinion – not medical advise as is with all others on this site)
Try continuous super high dose Testosterone first.
See links below.
In my opinion you should avoid ADT at all cost if possible---- if you stay on it – it leads to CRPC in 95% of prostate cancer patients – usually within 2 years.... which is the last thing you want … CRPC is a very aggressive form of prostate cancer caused by the ADT … very hard to control... CRPC caused by ADT is usually what gets people in the end..
So why do they give ADT? If surgery or radiation doesn’t get ALL the cancer first try … then ADT is about all they have left – either by itself or in combo with salvage radiation orchemo.
Instead of trying something else - the drug industry has spent the last 70 years trying to make different versions of ADT even though it leads to the same end.
M D Anderson Dr.’s and several other prostate onc doctors have told me ADT does not extend over all survival at all… (but it speeds you to CRPC)
ADT given just before and during radiation, does help make radiation kill more cancer cells.
If you decide on treatment other than continuous high dose testosterone -- I would go with radiation -- and if you do radiation – you may want to do a short stint of ADT – (for what little ADT is worth – ie. it helps during radiation it helps kill cancer cells).
I just talked to Radiation Onc last week ( I am considering the same thing) he said recent studies show -- that doing the prostate bed and 2 chains of near by lymph nodes was 80% effective for 5 years BCFS and over all progression free survival with 6 months ADT vs 65% for 5 years BCFS and over all progression free survival with no ADT... he said it was my choice -- 15% increased odds is not much compared to the possible long term damage ADT causes -- muscle loss, bone loss, increased potential for heart issues and dementia later down the road..
He recommended radiation of the prostate and close by lymph nodes only (even though I had evidence of lymph nodes micro mets at the time of surgery.) ... you can always come back and shoot other nodes if needed...
In my opinion do as little permanent damage as possible – you likely have many years – and immuno therapy is coming along at warp speed --- it will likely get there in 5 or 6 years if not sooner..
Second – I have refused any ADT and if I do radiation (which i'm leaning toward), -- I'll be on continuous Super high dose testosterone NOT ADT or bi-polar (alternating between ADT and High Testosterone)
My case is very similar to yours -- surgery in April 2016 -- Ive done nothing for 4 and a half years other than every other day Avodart and various supplements D3, Boron etc. PSA post surgery 0.03 -- currently 1.37 noi evidence of disease except on PSMA scan quarter inch spot of lite uptake semin. vescl., area.
In many cases the co morbidities caused by the treatment is truly worse that the disease. Co morbidities last for a lifetime and often you die from the cumulative effects of 7 or 8 years of that (ie. Heart failure, diabetes dementia etc) That includes the possible damage from radiation too.
As for those that throw the kitchen sink at it all up front – even if it helps --- for the next 15 years they will be living with all the co- morbidities since day one of treatment --- instead of 14 and a half with 6 or 7 years side effect free.
They have decades of millions of PCa patients that prove that with all the treatments --- they only extend life a year or so at best … compared to those that either refused treatment or like my grandfather found out about 6 weeks before passing on. They suspected when he was 62 that he likely had PCa – trouble peeing and had knots on prostate gland at exam. He refused to go find out because he said all his friends that went in the hospital never came out... He finally went after being stung by 7 or 8 wasps while he was mowing his lawn with a push mower at 86 years old. By then it was in his colon and all his bones. He just thought he was getting old LOL...
My dad was diagnosed at 63 he was radiated without ADT or any other treatment --- he is alive in Austin Texas --- 101 and one half years old born July 3, 1919
My uncles both radiated for PCa in the 1960’s one lived to be 100 and the other 97. No ADT – nothing.
in 2016 They wanted me to commit to 2 years of ADT to do radiation –with no evidence of disease other than prostate gland (prior to surgery) – for that reason I chose surgery – The recommendations have changed dramatically since then--- now – in many cases they only do 6 months ADT with radiation.. They would not do my lymph nodes even though at the time I was thinking be aggressive. They said that could be bad news – lifetime side effects – especially it it wasn’t needed. And it is questionable if it even helps even in nymph node positive patients.
High dose testosterone causes DNA damage and suppresses prostate cancer growth - july/2020
"Drugs routinely used for treating prostate cancer may actually be worsening the condition"
"A study shows why drugs used for treating prostate cancer which mainly functions by blocking the activity of androgen receptor signalling or stopping the production of androgen or testosterone is actually counterproductive in the long term. While both methods initially produce encouraging results, the cancer very often returns in a more aggressive form, and becomes resistant to these drugs. With cancer no longer responding to these drugs, it grows unchecked and ultimately causes death."
"For the first time, the study sheds light into why the FDA-approved drugs against androgen signalling to treat prostate cancer can backfire after initial success."
“ Several studies have already shown how stopping the production of androgen or androgen signalling through ‘androgen deprivation therapy’ at some point unintentionally helps the prostate cancer cells to become resistant towards this therapy and progress further to lethal forms. “
Androgen Deprivation Followed by Acute Androgen Stimulation Selectively Sensitizes AR-Positive Prostate Cancer Cells to Ionizing Radiation
Use of Testosterone Replacement Therapy after Radical Prostatectomy Might Kill Two Birds with One Stone from the Perspective of Men’s Health and Disease Control – July 2020
high risk patients (Gleason 8 and 9 with positive margins extra cap. Extension etc) who received testosterone replacement after surgery 15% had biochemical recurrence after 36 months – compared to the control group which had a 53% biochemical recurrence in 36 months.
Thanks George for all the info. It is good of you to put yourself out in this way, most appreciated. It will take me some time to digest what you’ve told me. I’ll get back to you if I have any questions Dai
It is widely acknowledged that it is a good idea to begin salvage hormone therapy in 3 situations:
(1) metastasis detected
(2) high PSA
(3) rapid PSA doubling time
A more controversial approach is to begin salvage hormone therapy when PSA reaches 0.2. Some evidence (the TOAD trial) suggests that this may be preferable to waiting for metastases to become detectable. There is an ongoing clinical tial that is using limited term advanced hormonals (Erleada and Zytiga) in such men.
Thanks Allen. This is interesting. I’m still thinking this through but one idea was to get one of the advanced imaging tests and if it spots anything get it zapped. I will take hormones if necessary and I certainly don’t want to wait for it to grow but I do have a horror of hormone therapy if there is another way. Dai
There is much more to metastasis than what is visible on any scan. Once it is detected, there is a LOT more where that came from that is still undetectable. What you can't see can harm you. Please read this:
Thanks Allen. I have read it a few times now. A really good paper. I may have a few questions for you. Just collecting my thoughts as this is the opposite direction to my thinking up to now. It does make sense to me. Dai
That sounds like a horrible surgeon! If it was contained to the prostate, no matter how close it is to the surface of the capsule, it’s still contained and there is absolutely no reason to go wide and take out a nerve. That’s almost malpractice in my opinion!
Unless you have extracapsular extension,, when the surgeon takes out your prostate he cannot tell how close the tumor is to the surface. Only when they stain it on pathology can they determine if you had positive margins (stains blue on pathology). Otherwise the prostate just looks like a prostate.
You just contradicted your own statement. First you criticized his surgeon for taking too much tissue, then you state the surgeon is unable to see how much tissue to take.
I had RP followed by IMRT salvage radiation, which gave me a 7.5 year remission with undetectable PSA. When my PSA started rising again, I was very concerned. Since my first radiation was the local area, I was able to have more radiation of more lymph nodes. That plus Taxotere put me in remission again, which has been 3+ years. Side effects from all treatments were minimal except Lupron.
My oncologists wanted me on Lupron 18 months. I stopped at 9 months due to side effects plus the fact that I had the other treatments that were “curative”.
My Lupron side effects included 20 lbs of weight gain (which has been very difficult to lose), hot flashes, 5% bone density loss, loss of libido, muscle loss, and (the worst) lethargy. In addition I was anxious to see if my PSA would again be undetectable when my Testosterone returned. When I stopped, I had a Lupron “hangover” - it took 6-9 months for my T to return to normal.
You need to get confidence that you are in control not the cancer. Your PSA is very low even including the rises but with no prostate there is no reason to have a PSA reading above zero at all. The residual cancer is very very small. You need some minor ADT to control it. 5 mg of finasteride daily might work to slow it down.Usually it goes to half your last reading. You should track your DHEA,DHT and PSA and T.
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