When I was diagnosed with prostate cancer in 2011, the first thing I did was to read the book on prostate cancer by Dr. Walsh. In 2018 edition of that book, Dr. Walsh states that ADT use should begin only when there is bone pain, observed "large" tumors, or other significant signs of progresion. He advices that ADT should not be used merely as a response to rising PSA after primary treatment.
I am just curious what everybody thinks about it.
I assume you mean after a prostatectomy.
There are 3 commonly accepted indications for beginning salvage ADT:
1. clinical progression
2. high PSA
3. rapid PSADT
(Doctors may differ on what criteria to use for each)
There is some suggestion that ADT is more effective if used when biochemical recurrence is reached.
thelancet.com/journals/lano...
The bulk of the evidence in the last 5 years has been that early systemic eradication of cancer provides superior survival and equal or longer hormone sensitivity compared to waiting.
If my PSA went to undetectable and has been very slowly rising and my path report was favorable, I may be able to wait. If my PSA was persistent and rising, and my path report showed GS9, and/or a new PET scan showed metastases, there would be no doubt in my mind. It has to be decided on a case-by-case basis, until we have clearer info.
TOTALLY agree with TA and that is from my own personal experience.
I read the 2018 edition. I know there was a section where he discussed metastatic disease and no benefit to starting ADT immediately. OS will be the same if you start it immediately or wait for bone pain and then start. I think it was in reference to castrate resistance. I read it a year ago so might have remembered it wrong. I blame ADT brain fog and cognitive impairment.
I believe his logic is that, at least from his understanding, life expectancy is basically going to be the same, starting ADT early or waiting for those symptoms he mentions. Thus, if OS is the same ( is he right?) give yourself a chance for a longer period of the best QOL before submitting to ADT, etc. So, that makes sense....but is he correct re the same life expectancy whether ADT started earlier or later? OR, is he unaware of studies showing his understanding to be incorrect. From what I have read of Dr. Walsh, I have great respect for him, as he seems to have dedicated his life to helping men overcome PCa.
I ha e learned so much since reading that book that I would have to go back and read it again to answer that. It was a very good entrance into PC for me though, so much so that when I had my last office meeting with my urologist was a complete waste if time and I realized how old his info was. I also went into my first meeting with my MO with a base of knowledge to start with.
I've read that section of Dr. Walsh's book several times over the past few weeks. My husband refused ADT for the past two + years and chose only surgery to start and then only salvage radiation with rising PSA after surgery even with his Gleason 9, 3Tb and a PSA that never went below .3. Now that there is spread to a few lymph nodes and a small section of bed area that was already treated, the ROs say systemic treatment is what is needed now. We will not wait for bone pain as we know the time is right for my husband to do systemic treatment, which will be a combo....just not sure which one yet. We have no regrets about refusing ADT up to this point. It really is a personal decision. Even though my husband still has no symptoms, we feel we must move to an aggressive approach now and sadly that's going to include ADT. We've had two great years with no adverse reactions to drugs. My husband worked a physically demanding job for 2 and 1/2 years so we could have insurance until he could retire this year, we saw our 2 sons get married, welcomed a new granddaughter, another due in 3 weeks and traveled a lot this summer in the RV. For us, we delayed ADT as long as we thought we could and have no regrets.
That sounds like a good decision for you but don't think of things ending when starting ADT. Certain things will but life for me hasn't changed much so for some of us it hasn't turned out to be horrible. It might not for you both either.
I hope so treedown. Mr. Snappy has a great attitude and he has tolerated everything he's had to deal with really well so far. I know he will keep on fighting, just like the rest of the guys here.
Lots of people , most even , only have light to moderate side effects to adt . I’m not speaking of the obvious , easy to deal with, chemical castration ... manboobs ... loss of sexual function , organ shrinkage , etc. .... those can be dealt with satisfactorily, I’m speaking of the really physically debilitating side effects that cause loss of mobility, muscle stiffness, sickness, body pain .... lowered QOL .
I’m one of those that experience the really difficult side effects and even people like us can go on and experience life as much as we want, changing things to suit the difficulties ( like no more walking up stairs for me for example ) . Things might change up but everything in life can go on , even if somewhat modified. For me, getting my life extended by several more years to enjoy with my wife is well worth the changes and difficulties that adt brings .
Just say’in 💪💪💪💪👍👍❤️❤️❤️
Good choice for you at the time but don’t anticipate a bad experience with ADT since it’s there when your husband needed it. The alternative could be worse for some. My husband started ADT after his PSA was 33 post- prostatectomy . It’s not ideal but I know it saved us more time to be together. Why I mention this is we are happy still and grateful for an undetectable PSA . Wish an easeful start to adt. Exercise, healthy eating and a concerted effort to keep up mental and emotional health through mindfulness will help!
Hopeful for you both 👍🏼
I have to agree with some others here. I’m a 64 yo GS9; dx 2007; open radical prostatectomy 10/07; was all over the place at removal (up the neck of the bladder, vas deferens, muscle wall surrounding the prostate, two of 15 lymph nodes)...so Advanced PCa out of the gate (at age 51). Had salvage radiation in 2010 at 1st biochemical reoccurrence (38 treatments). Had intermittent ADT from the beginning diagnosis until 2014, at which time I entered a clinical trial where I’m on continuous ADT (Eligard every 3 mos) plus bicalutamide (50 mg) daily.
To be honest, side effects for me were much better with Eligard over Lupron (had that the 1st 6 mos following removal, then switched docs (from urologist to MO) and started Eligard). Can’t say too much bad about ADT other than no sex - but having been the youngster at support group meetings, hearing a lot of 70 yo folks lamenting no sex when my days ended at 51, I wasn’t too sympathetic! Hot flashes were terrible with Lupron, but I found them lower with Eligard. However, I’m still here 13 years later! It’s growing slowly, (PSA currently 1.25), but I still respond to the basic treatment - haven’t gone refractory yet. Did go metastatic to get into this trial (they “let it grow” because I respond so well to basic treatment), but I went from PSA 24 to .06 on just bicalutamide alone (6 weeks daily), before they reinstated my Eligard.
My MO wants to move me towards Provenge when I’m kicked out of the trial, which should be next summer based on current growth rates, but meanwhile I’m still working FT and fighting through the fatigue, which is my worst SE...plus the weight gain...but life certainly doesn’t end - it just changes.
Wow- I am showing your story to him as a wonderful hopeful example of how long you can live well under ADT
Well I’ve been lucky...as Patrick says below, I too was frightened of going CRPC...everything I’d read early on said if I went to continuous ADT, it would happen faster, and my MO talks a lot about not using our “bullets” before they’re needed. However, he said we should try the clinical trial, and I could drop out if things got weird...luckily they didn’t/haven’t. We’re all different, with many variations of this lovely disease. I’ve had friends go very long like me, and I’ve had friends who were gone in less than 36 months. Why I was “picked” to acquire this I won’t know till Pearly Gate time; however, while I’m here, I’m hoping to help others, especially folks just starting on their journeys. Maybe I can give them some hope, because I know how horribly frightened I was at diagnosis; today, I go with the flow... I could turn tomorrow, but I don’t expect to. I have a great medical team, and we all work together to keep me above the dirt, for which I’m incredibly thankful.
There was a frequent visitor here when I was first diagnosed, Chuck Maack, who was the leader of the Wichita USToo support group, and he too is a long timer - he was my hero, the guy who gave me hope that I could make it long term. I didn’t always agree with his conclusions concerning treatment, but knowing I might make it long term was a “cross your fingers” moment - and I always appreciated his counsel. He’s still plugging along 28 years into his journey at 88 years of age, and appears to be in remission today. Check out his website, theprostateadvocate.com, where you can read about his path through treatment - it’s an interesting read!
In 2004, aged 56, I had PSA persistance (0.3) following my RP. My doctor said "Some would say that you should begin hormonal therapy." That was still common at the time. He knew that I wasn't going to jump on that. I had read plenty of papers on PubMed that claimed that ADT failed for the majority of men within 18-24 months.
I felt then & still do that it is reckless to use a temporary palliative therapy prematurely. Use it when you need it or you will have CRPC sooner than you should.
I feel the same way about Abi & Enza - perhaps more so.
A recent survey found that many men on palliative treatment believe that their therapy might be curative. I certainly understand the disinclination to wait, but it is magical thinking to expect a cure from therapies that solely target the androgen receptor axis.
16 years ago CRPC would have been followed by lackluster Taxotere & an early death. But I knew that ADT would be in my future.
Eventually, I had to turn to ADT, but I alternated with testosterone to avoid CRPC. Eventually (2018), I adjusted my approach to more closely mirror Denmeade's BAT protocol.
Bone pain is certainly a signal to begin ADT, but not all bone lesions cause pain. A simple bone scan will show up large tumors that might be handled via radiation, if few in number. My L5 was radiated 7 years ago.
Conversely, a small lesion that doesn't show on a bone scan might nonetheless cause pain. This happened to me at SI in 2016. (My BAT regimen needed tweaking.)
-Patrick
Hi Patrick, thank you for your knowledgeable and trustworthy posts, hugely appreciated. I also have recurrence after RP, psa now 0.4, psadt 18 months, G7. I don’t want the standard NHS radiotherapy and ADT, but BAT sounds interesting. Is there a practitioner/ oncologist who does this privately in the UK.
There must be someone.
I suggest that you contact Sam Denmeade at Johns Hopkins. He would be able to answer you. His email address is in:
hopkinsmedicine.org/pharmac...
Best, -Patrick.
I had a prostatectomy Oh about 13 years ago. A year latter I did the radiation, after the PSA rose to 0.1. I'm 10 months into Lupron and Zytiga. When I started this latest treatment, I was in a lot of discomfort. The PET scan showed cancer involvement in the hip and lower spine. Also in the groin. My PSA doubling time went from 14 months to 6 months. PSA was 17.
MY MO was basically watching my PSA for 4 years slowly rise. Once doubling time accelerated, ADT therapy was applied. Doing very well presently, dealing with fatigue and hot flashes. I hike each morning. Recently added rowing to the daily routine, really seems to help.
And Yes, the first book I got was by Dr. Walsh. It's still by my bed. It's all marked up and sticky notes imbedded in pages.
I'm getting fond of my tits........(almost proud)....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 11/17/2020 10:01 PM EST
I was finding this conversation pretty depressing, but it got me thinking.
Having been on and off ADT for four years now, I found out last week that my PSA rose for the first time while on lupron, suggesting that I have become castrate resistant. We haven't confirmed it, but I will have test results this week. Before this rise, we had been planning to take another 6-12 month vacation, but my MO feels that is out of the question and that I should start on zytiga in January. I was diagnosed 10 years at 44 and have never had bone mets, or any other problems from the cancer for that matter. From what I read here, what is the point of hitting it head on right now? My PSA is .3, up from .2 two months prior. Before this rise, it had been steadily, if slowly, dropping since I restarted Lupron in January. How bad is that? I have no idea anymore. I guess what I am asking, Should I take a break anyway, at least for a little while? Then wait for the pain to start? I realized on my last vacation that I like not being on ADT more than being on it, and am feeling a little ripped off right now.
Yeah, I know. Thanks for listening.
Fuck Cancer.
Bill
Fuck Cancer, My thoughts exactly.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/18/2020 7:10 PM EST
Starting ADT
Strokes and ADT?
ADT Vacation?
