So I have decided to start ADT for 6 months which will be followed by 20 sessions of IMRT and Brachy Boost in June 2024 and finishing off with another 6 - 12 months of ADT. I was ok with going down this path as was my RO and then someone said to me, "Why put yourself through 18 months of hell when you can have a prostatectomy and it's all over within about 3 months or so." they went on to say that the data shows that the end outcomes of both treatments are very similar.
I understand from these comments that I am being told that ADT is pure HELL and is worse than a few months of incontinence that can happen with RP.
So now I need some assurance, - Am I making the right decision? Is ADT as bad as I'm being led to believe? is RP much more successful at giving fewer side effects than what ADT/RT/BBT will give?
HELP
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Mike58
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In the end the choice is yours. I had prostatectomy 7+ years ago. Been on ADT and am doing fine with SE's through working out and proper diet. Good luck in whatever you choose
Idiotic advice, IMO. There's suggestive data that RP is far less curative than BBT for high risk (mortality is twice as high for RP). So what is the point of sparing yourself a few months of ADT now, only to have to have 2-3 years of ADT later with SRT?
Many men tolerate 18 months of ADT with only libido loss and hot flashes (if you exercise more). Which side effect of adjuvant ADT has got you so worried?
I can always count on you T_A for a no punches pulled comment. And I'm thankful for your reply as it is what I needed to hear. You know from previous posts that I've gotten myself worked up a little about ADT symptoms and it isn't the Libido so much as it is the hot flashes (or is it flushes??) and the fatigue. I guess I am wanting to try and live the current lifestyle I am on without having to cancel holidays and special events and sit in the corner and wince and bear these SE's for 2 years. I know that ADT affects everyone differently and so I hope that I might be one of the lucky ones who can totally cope with these changes and not have to adjust the lifestyle too much. Thanks again as always.
IDK if Veozah is available in OZ. If not, you can try aural acupuncture, estrogen patches, Megace, oxybutynin, or venlafaxine. They all work all the time 60% of the time 😉
Thanks - I shall ask about those drugs on my next appointment. I am assuming by your last comment that you meant to say that such medications works 60% of the time??
A common joke among doctors. None but Veozah works perfectly for everyone, but they all work well at least for some. You have to find what works for you and balance the side effects.
Hi Mike, ADT can be tough at times. Take a look at my Bio. I am satisfied with my decision for brachy boost therapy with ADT. The ADT SEs are manageable.
Thanks TylexGP, Wow your Bio is very comprehensive and by all accounts your treatment (which is similar to what I will be doing, albeit I will be on ADT for 6 months before RT and BBT), seems to be going to plan. Its also good to know that your SE's are manageable, I hope I have the same outcomes. All the best with your on going treatment.
Thanks so much for your answer. It gives me hope that maybe I might be able to cope with ADT far better than I am expecting. I know that T_A once said that on this forum you do not hear from the multitude of ADT patients who are coping very well, you mainly hear from those who are struggling, so again I thank you for reaching out with your reply and I hope you continue to manage your PCa effectively.
RP is a terrible choice, strictly my opinion and I had one. In higher risk disease RP alone is almost guaranteed to fail.
Fear not the ADT. Severity of ADT side effects are not ‘luck of the draw’. Yes they can be different for every man, but overall exercise is the prime difference maker. You need a lot of it on ADT, but then again when you’re getting older you need a lot of it anyway.
London 441, I read your Bio and your reply to me gives me a lot of confidence that I am heading in the right direction. Thanks so much for reaching out. All the best with your ongoing experience.
Yep I think you're right. It does seem however that a number of high risk sufferers go down the track of RP (and thats fine) but then go down for the count when some of them are told they now need to do ADT and RT. I don't want to be one of them.
My husband is 76 and is in his 5th month ADT. He has had no hot flushes, baseline T of 350. He actually had no SE until the most recent shot, 3-month Eligard. Now he has bad fatigue and he's not working out. On days he does Tai Chi with me he feels better. His legs were absolutely excruciatingly painful after the Eligard shot (month 4) but now, with vitamin D3 5000 mcg and high quality, potent CalMagZinc supplements, most of the pain is gone. He did notice if he does a 1-month shot (Lupron) the SE are not anywhere near as bad as a 3-month shot. There are some medical articles that mention this: a 1-month dose disburses evenly over time, whereas a timed-release 3-month dose seems to have an initial surge of med greater than the 1-month, then drops off dramatically by week 6 of 12.
After this 3-month shot of Eligard my husband is going back to 1-month Lupron, fewer SE for him.
This is really interesting and I am going to talk about this with my RO. I am due to head overseas at the end of March 2024 for 2 months and I would be due for a 3 monthly injection of Eligard (I havent started yet) just prior to leaving. Now your comment worries me somewhat. However how do i do monthly injections if I am away? Can we self administer this ourselves like a diabetic does with insulin? Plenty of questions to ask.
Thanks for sharing your experience and I wish you and your husband well.
Gleason 10 here Mike, just finished 24 months ADT, yes SE can be a pain in the butt now and then, but am glad I went down this road. I have asked for and been OKed for another 12 months of ADT, it's working for me so why stop I say.
One recent review of radiation +ADT treatment found that ADT at 19 months maximized overall survival, while ADT beyond that 19 months continued to have a smallish incremental benefit as far as PCa -specific survival and metastasis-free survival. The authors expressed concern about SEs/QOL concerns as the ADT duration was extended.
Thanks for your very positive reply pop1959. Just what I needed to read. Glad you are coping well and making the most out of a difficult situation. All the best to you.
My husband is taking monthly firmagon injections and is supposed to be on ADT for 2 years. He’s on his 4th week of IMRT and so far (knocking on a lot of wood) only mild side effects with hot flashes and mild fatigue every now and then. He is Gleason 9, high risk. We went back and forth between surgery and radiation only because the urologist kept leading us down that surgery path, but the MO told us that it would not be the way to go since there was already a very small node showing up and the surgeon could not reach it to remove it. Why do the surgery only to have salvage radiation later?? You have to get with the right RO. In my opinion after all of my research, radiation and ADT was the best treatment option.
Thanks for your reply. Yes I agree that I am heading in the right path. My RO has said that what I am doing with the 6 months of ADT and then the RT/BBT and then continuing on with ADT for 12 more months is in his opinion a curative treatment, which is what we all want to hear. Time will tell. -Thanks again for your answer.
Hi Mike. I think you have plenty of input. I’ll just add that I was dx 12/2014, Gleason 9, had RT and have been on ADT since the start ( Casodex till 2021 (2yr vacation midway) and now Zoladex from 2021). Main SE for me is fatigue but staying active and some gym work helps. Good luck.
I’m in my third month of ADT with minimal SE so far(loss of libido,some mild hot flashes,minor fatigue)….dont interrupt a treatment plan for fear of ADT side effects as your chances of mild side effects are as good as anyone else’s……remember the forum you are on…..there are lots of guys out there who don’t report here who have mild side effects.
Excellent reply Tommy. Just what I needed to read. Yes some people have horrid SE's. I know a guy who says that he had to stop ADT coz he woke 3 times a night totally drenched and he was going downhill rapidly. That is of course an extreme case. As you said (and I have no need to doubt it) - most men have very manageable SE's and quickly adapt to living with them. I certainly hope that will be me and I wish it were for every guy who goes down the PCa path.
I have been on ADT for 11 years. I find the SEs to be considerable but I enjoy life, play(ed) golf and tennis (until recently injuring my shoulder playing Pickleball. I know everyone is an individual with unique responses to both the effectiveness of treatment and the SEs from treatment, and although I described my SEs as significant, I would be happy to live with them for another 11 years or longer. Goodluck!
Well your pathway to get to 2023 is a little different to many others but Hey - here you are enjoying life. Thanks for sharing your thoughts with us. And i so hope you get another 11 years - no another 22 +years of enjoyable life.
This is a great time to sit, read, study and make a decision you can live with for the years to come...you will survive this cancer; most do. So make as good a decision as you can, document in a journal WHAT you are thinking and WHY you decided to do what you are going to do...then JUST DO IT. If things dont turn out the way you hoped you will know why you decided to go the route you did, redirect and treat again. Dont delay beyond the point you need to trap this cancer in your gland; do NOT let this thing get out in your body if you can prevent it. Here are some articles I have posted plus my personal journey...check my site out for more articles and studies of interest...good luck. Rick
PS on the last post; ADT can destroy your penile tissue...its a serious drug and something that will save your life IF you need it...before you start on its use you need to know what it will do to your sexual health. Dont shy away from it, but know what to expect and plan ahead.
Thanks Montana, you have given me some extra material to "enjoy". You have put a lot of effort into helping us PCa sufferers for which we are very thankful. As mentioned in my original question, I am about to start ADT for 6 months and then hit the PCa with RT and BBT. However I am first going to get another MRI in the coming week just to see what has happened between my last MRI (August) and now. It will be interesting to see what if any growth has occurred over the last 4 months of no treatment. My original Urologist said that some very interesting data showed up as a result of Covid when many RP's were cancelled. He said that most of his high risk (GS8+) patients who ended up waiting for treatment (up to 18 months) because of Covid had no change in the PCa progression and it significantly surprised them all. Of course that doesn't mean that this will be the case with everyone, but that data is certainly interesting. I would assume that this would be the case worldwide.
Anyway, thanks again for your reply, I really do appreciate your time. All the best to you.
No problem...PSADT (doubling time) is key as well as PSA Density...those will tell you the 'speed' at which the PCa is progressing...if the DT is more than 15 months there is less to worry about then if its less...here is a good podcast.
By all means get testing; scans, genomics, genetic, etc...get whatever testing YOU THINK you need...if your Dr does not cooperate find a new one. You get one 'at bat' with this thing and with each treatment 'one swing,' so dont take NO for an answer...its your PCa...Rick
Thanks John, - reminds me of the guy who had his own leopard as a protector when he walked through the park at night. All went well until he was mugged by a guy with a Rhino.
I wonder why ADT SE's seek you out when you go to bed? Should we all turn into an Elvis and sleep during the day and stay up at night? - probably no difference.
Yep, maybe 5 - 10 years ago RP would have been the way to go and yes I know some who have chosen that path with great success and I also know someone who had it done 14 years ago and still wears pads and had to have an artificial sling to prevent complete lack of bladder control. Not nice at all. He does however never complain and says he would rather that, than be on ADT for years on end. Not sure if that comparison matches up or not. Thanks for your reply.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
Thanks Groundhog. Yes I have used that chart before. It does seem to be based on genuine data and I think it is quite accurate. Of course we all react differently to whatever the treatment is. Fingers crossed that each of us have adopted what will work for us. 👍
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