What Action Should I Take?

[London441]

What I’ve been learning lately is leaving me uncertain of my path, both prescribed and my role. I seek the input and experience I know is here, which I’ve been most grateful for.

After having competed a clinical trial in September for my 4+3 with ECE and SVI, 1 lymph node T3B disease after RP in 2019, I am left with questions I no longer am confident I’ll get right answers for.

First, I was let off Eligard at 12 months (the trial originally stipulated 2 years). There had been speculation about shortening that from the beginning so I wasn’t surprised. I know there’s no data for 12 months vs 18 or 2 years so I’m taking my chances there- understood.

The trial was aggressive; ADT, chemo and abiraterone concurrently, followed by IMRT 37 sessions. Since I was recently questioned about the ending the ADT early I got a second opinion, which did little but to confirm that there’s no way to know if a year is gong to be enough or not, but the 2nd doc said he would do the same if he were me. QOL always figures in with ADT of course.

However, I have now discovered that the IMRT I received is inferior, particularly long term , to SBRT and especially brachy boost therapy. I can always get back on ADT drugs, but I can’t go back and do the radiation over.

Add to that the prostatectomy I started all this with, which more than anything else I’ve done I wish I had considered more carefully. I wasn’t given a hard sell by the surgeon by any means; he was very clear that radiation had at least similar efficacy. Like a lot of men though, I ‘wanted it out’.

In retrospect it was almost certainly ill advised with my pathology. It left me heavily incontinent despite the ‘95-98% dry after a year’ claims I received plus a shorter, thinner and so far non functioning penis-which I expected but not to this degree. I know there are good options for the impotence and incontinence, but they will mean at least one more surgery if not 2.

My PSA has been undetectable since the RP in June 19.

I wish there were something I could do to help my chances for a long remission going forward but having been somewhat saturated with treatments in the last 18 months I’m not sure what I could get excited about.

My trial MO gave me a slightly better than 50% chance at a cure from this. I am healthy and happy with no remaining side effects other than from the ADT, which are slowly dissipating at the nearly 5 month off mark.

I’m inclined to just go on and see how I do, but with all I’ve been told and various conflicting information I’m just not sure. I understand it may have been eradicated but I somehow think it unlikely.

I’d be willing to do something to help give myself the best chance for an optimal outcome but can’t imagine what that would be. Perhaps having just finished treatment with a undetectable PSA is not the time to make any decisions .

I’m certainly open to suggestions. Thank you!

[Tall_Allen]

I'm not sure you want to hear from me - if so, please just ignore this. First, I want to say that the treatment you got on the clinical trial, which included Taxotere and Zytiga as neoadjuvant therapies with SRT (if I understand correctly) was as powerful as one could get, even if it was just for a year. If SRT included the entire pelvic LN area, there is nothing more to do in pursuit of curative treatment. Your undetectable PSA is indeed encouraging.

I can't imagine anything further to do other than monitor PSA. I would recommend using a conventional PSA test (which you may already be using) rather than an ultrasensitive one because the tiny random fluctuations serve no purpose other than to create anxiety. There is nothing you would do anyway until PSA reaches about 2.

[London441 in reply to Tall_Allen]

Not sure I want to hear from you? I ALWAYS want to hear from you. I just don’t always like what you have to say.

You are a great gift in my life. I just need to appreciate where your opinions come from-hard data and intelligent extrapolation of it. I don’t have to agree.

It’s not easy being told your doctor doesn’t know what he’s talking about. I’m learning a lot about everything. I wish I’d started learning this much at diagnosis, but I know how common that is, and I don’t look back.

Since my goal is to remain teachable and help others in every way I can in this short life, eliminating you from it just because you pissed me off once is absurd.

Like any man in my situation, I hope to cruise to a dignified and lucky death from something else, hopefully not soon. Today is what matters-on that we agree I know- and my ‘today’ have almost always been good.

It’s great to know there are so many more options just in the last decade or so for Pca, with more hopefully soon, and it’s good learning the details.. If I should need further treatment I’ll be that much better informed. Thank you.

[doc1947g in reply to Tall_Allen]

As far as I understand, the Brachy Boost can just be done if you still have your prostate.Maybe I am wrong but the Brachy is done Trans-Perinal and they put little rods in the prostate.

[Tall_Allen in reply to doc1947g]

That's how HDR brachy is done.

[doc1947g in reply to Tall_Allen]

And LDR is almost similar except they use tiny catheter so they can implant radio-active pellets in the prostate.I guess the "Boost" one is like the HDR.

[Tall_Allen in reply to doc1947g]

No, they can boost with either.

[doc1947g in reply to Tall_Allen]

But you NEED a PROSTATE.I guess they cannot to it to the prostatic bed?

And if a patient had a LDR, can they receive a "BOOST" ?

[Tall_Allen in reply to doc1947g]

It's only for men who have a prostate. Perhaps ask questions in private so we don't kidnap the thread.

[doc1947g in reply to Tall_Allen]

OK, I was asking for the public.

[tango65]

I believe you could not do anything else in relation with the treatment. It was an intense treatment and you have undetectable PSA. You could discuss surgical procedures to improve the incontinence, such as artificial sphincters or pelvic slings. You could also discuss about penile rehabilitation and penile implants if it is too late for rehabilitation.

[Hidden]

Not sure if seeing a pelvic floor physiotherapist could help you- my husband saw one and she made a huge difference for him. He got a pamphlet from his urologist for Kegels and he was not doing them correctly. Did more harm than good. Hope that helps a littleBTW - a chance for cure would be a miracle for us so hope that is the case for you.

👍

[London441 in reply to Hidden]

Thanks very much! I’m so glad he is better.

I saw a physiotherapist for sure, she was great. Like you said, there is a bit of an art to it.

But in the end there was no improvement. As soon as pandemic-related delays for elective surgeries clear a bit I’m getting an artificial sphincter. Onward!

[kaptank in reply to London441]

At the same time you do the sphincter you can also get a penile implant. Kill 2 birds.. Find a urological surgeon experienced at this. Well done. Good result so far.

[London441 in reply to kaptank]

Thanks I am holding out for natural return of function. I was actually having some between my RP in June ‘19 and the start of Lupron in September. Once the Lupron started I quickly had so little interest I didn’t bother.

Now that I’m done, I speculate my lack of rehab (again due to zero libido) may have left me atrophied. Efforts so far have seen mixed results. I’m glad I had so much sex when I was younger, it makes it a little easier to be philosophical about it.

It may return. I expect I’ll know soon. If it doesn’t I won’t hesitate to move to other options, despite what I just said😀

[A0007720]

Hey London, sorry about your troubles and sorry I have nothing medical to add.

I did want to publicly commend you for suggesting to me some weight training during my ADT. As a result of your suggestion, I started it and do it 2 days per week. I'm working on increasing to 3 days per week (I do elliptical and bike the other days, for a 7-day-per-week regimen).

The strength training you recommended has truly changed my life after about 3 weeks. ADT depression and crying are down.

London, as we say here in the US, "You're the man!" Blessings for your treatments!

Thanks for your help!

[London441 in reply to A0007720]

This is great to hear! Anytime I give good advice-that’s also taken-I am indeed ‘the man’, since rarely are they concurrent. Usually either my advice is poor or it’s ignored😝

The exercise is indeed transformative. May you never go back!

[oldbeek]

Don't know why Covid is stopping quality of life operations. I had an AUS installed at Keck USC in Los Angeles in August of 2020 . My surgeon said it was a quality of life procedure, not elective surgery. Not many surgeons want to do AUS and implant at the same time. To big of a chance for complications. Implant is not the perfect answer. It is not the same as a blood filled member. I had implant early because my RP surgeon said he had removed all my nerves and erection was never coming back. Having 2 pumps in your scrotum is also a challenge.

[London441 in reply to oldbeek]

Do you like the implant? Do you still have incontinence issues? For me they are explicitly intertwined.

[MateoBeach]

Congratulations on being undetectable while off of ADT now. If that continues as T recovers we will all celebrate. Your very aggressive treatment would have paid off despite your sexual and urinary battle wounds. Still you must take the long view. It can take years both to reach a radiation nadir or to see if any cancer stem cells escaped the field. So you should continue to do all of the adjuncts and lifestyle that optimize your condition. And enjoy each day alive with gratitude and wonder. That is my view. Peace

[London441 in reply to MateoBeach]

Yes thank you, couldn’t agree more. I work hard with diet ,exercise, spiritual condition friends family etc to help myself, knowing full well none of it guarantees anything , and I expect nothing. Today is beautiful. I’m cured until I’m not I always say.

[Hidden]

Hello London 441. It sounds like you have a comprehensive plan. May I lease ask your GS and PSA before entering the trial. My husband has ECE and positive surgical margin. He had nerve sparing and he shouldn't have. PNI invasion. Lymph nodes and seminal vesicle negative. 2 months he post surgery PSA undectable. I asked his urologist for a radiation oncology consult and his radiation oncologist immediately put him on Lupron, Bicalutamide for 6 months and we are waiting to 40 rounds of radiation. Is this enough treatment? Thank you

[RCOG2000 in reply to Hidden]

One of the metabolites of the non steroidal anti inflammatory. Sulindac (clinoril)was shown many years ago to have some benefit in promoting apoptosis in colon cancer.

pubchem.ncbi.nlm.nih.gov/compound/Sulindac-sulfone

I chose to use clinoril for several years after my initial treatment with brachytherapy and EBR in 2000

This may or may not have helped sustain my eighteen year remission prior to reoccurrence

[London441 in reply to Hidden]

Hi Carnations. My Gleason was 4+3, PSA was 16 before surgery, undetectable when starting the trial 3 months later.

You say he had nerve sparing and ‘shouldn’t have’. Not sure what that is based upon. I cannot give medical advice about his radiation or anything else but hopefully you have a good medical oncologist who will work with you.

[Hidden in reply to London441]

Thank you for replying. My husband is also 4 + 3, PSA 18, then 23 by a different lab. Communications got mixed up. My husband said he would leave the decision up to the urologist as to the amount if any of nerve sparingig any. I think the stupid intern who assisted with the surgery or who did the surgery on him didnt read his records. High risk for PNI. I think he needs more agreesive treatment like you. Best to you.

[RonnyBaby]

You've been thru a LOT.

You are also at the 'undetectable' level.

For arguments sake, that was the objective - 'undetectable' showing some measure of success.

The question is success for how long ?

The answer - time will tell and the most reasonable approach to take is to WAIT and see.

IF they 'got it all' - you will end up in a different frame of mind - given time.

As a PCa 'patient', we will always wonder and worry about IF and WHEN it MIGHT or does come back.

You will NOT get your answer right away - so allow time for healing and resolution.

You MIGHT be able to put this behind you - but worrying yourself 'silly' day after day will drive U NUTZ.

Time for a 'time out' and continue to monitor.

Even a BCR (after a vacation from ADT) is not the end of the world.

Go / Stay on the ADT vacation and allow time 4 the more definitive answers - Find some peace and get some rest and heal.

That is the doctors orders !

[London441 in reply to RonnyBaby]

Sir yes sir. Thanks for the encouragement and reminder for balance!