PSA 1078 on 8/28. Had an 11.4 mid July (different labs).
Just had PET test - awaiting results, but docs so far thinking it is localized.
I am 59. In very good shape in terms of strength, etc. Have lifted weights for decades (still can bench press over 300lbs, etc),
While I know I’m aging and things have changed, and will continue to change, I’m most scared about the ADT making me a shell of my former (and current) self.
I have an incredible wife - and we share a very satisfying sex life. She is also VERY supportive and wants me around forever- no matter how I change physically. A true soul mate (we’ve worked together for decades, been married 35 years - are always together and don’t get sick of each other - hehe).
I’m not ready for the intimacy and activities to end, but, reality is hitting me hard.
My radiologist (based on expected PET results) is saying 7 weeks on 5 days of treatment. I’m fine with this, not thinking surgery now.
My thoughts are:
Being relatively young and very strong (at this point), do I hit it hard and do the ADT for a couple years? Or:
Being young, and doing this right away, does it get to the inevitable resistance level I’ve read? And, if that’s the case, why not put off the horrible side effects- or lessen them, as it will simply get to the point I have to do these different (and worsening) things anyway?
Or, should I try something different/less aggressive (if there is such a route) or intermittent ADT or less duration ADT to hopefully postpone the eventual resistance?
I have a VERY bad feeling since I am the way I am, it will hit me hard as it will be such a drastic change. I hear about it not being too bad for some - but, thinking logically, that is likely people not as active, strong, etc. to begin with.
I’d (obviously) prefer to do as little as possible, but is that pure fantasy?
I don’t see much data with actual numbers regarding intermittent therapy vs long term, etc - seems I mostly see things simply saying it’s needed with aggressive situations (like mine).
Then I come here and read a plethora of acronyms and drug names and this one did this, this one did that - and I’m far more confused than ever (not blaming posters, answers, etc - simply the way it is).
PLEASE CONSIDER: I’d much rather have 5 pretty good years than 10 not so good, or 15 bad. Quality over quantity. I thought I’d think this if ever actually faced with something like this - but one cannot be sure - but I’m still thinking very strongly this way now that it’s becoming “real” …
Are there actual studies that can give me REAL guidance in this regard?
Please help a confused newbie out - thanks in advance.
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There is something to mention, I heard on a podcast with Dr, Attia and Dr. Ted Schaeffer at Northwestern, they talked about Luminal type tumors and Basal type, say Luminal more responsive to ADT and Basal survives in the absence of T, would like to know more about this and how to determine the tumor type.
I’d avoid Lupron, but there are worse things than Relogolix and Darolutemide. They brought my PSA down from 125 to .02 in just a few months. Your testosterone and libido will be crushed, but I still do full gym and HIIT swimming workouts
My PSA dropped to “ undiscoverable” in about 3-4 months, but they wanted me to stay on it for ten months. I then had “vacation “, which was great as T bounced back to 500 in about a month, but PSA climbed too, and at 18, I went back on both after about five months my PSA Is again dropping quickly and I’m at .15.
Note that SOC includes the chemo Docetaxil, which I declined
The posters of this forum are, in their majority, pro RT + ADT seeking for a "cure". I am with the very slim minority that understands there is no "cure" and trying to trade treatment side effects against remission time. In short, I am the odd one out, but still happy with my "trades". Good luck to whatever you decide upon.
Thx - yes, reading much of this, seems many do so much, yet it still progresses - that’s why I’d like to see data on people doing different things with outcomes - can’t find much …
I’m not seeing (yet?) any saying I was younger, did 24 months of ADT and been cancer free for (x) amount of years…
Makes me think doing intermittent is for me (but certainly not sure)…
Hope you understand that intermittent therapy only applices to systemic therapy and you need to start using it first and see results in for example the PSA dropping to undetectable levels before you can go of the treatment, wait for the PSA raise and then at a certain level, start again. That’s the intermittent way and the sad truth is that lots of Scientific evidence shows that, even with intermittent treatment, eventually the treatment doesn’t work
But the point would be AChigher quality of life (when “off” and, should lengthen the time of it being non effective).
I know some people just can’t grasp a world without them in it, but I could long before this - and, again, I’d rather have 10 better years than 20 more miserable, tired, etc.
Intermittent was the old heating boiler you had in your parent's house 50 years ago. It was governed by an ON-OFF thermostat. Today, inverter controlled heat pumps are subsidized in many countries, as being more energy efficient, hence better for the environment.
Even in your example you still need to turn something on, of, then on again otherwise its continous.
So, for the sake of this thread you first should start to know the baseline and look at the professionals proposal for initial treatment before even thinking of a step in the treatment that might be a part of the treatment step further down the road or not).
TA seems to be a good person in providing expertise in many different areas of prostate cancer treatment so, hopefully he can refer you to documentation, publications, studies etc. in this area as well
You will of course find lots of these kind documentation, publications, studies online if you want to look at it when used together with prostatectomy, radiation, focal therapy, as only treatment, as part of a package with other systemic therapies and etc.
Anyway, best of luck in your way forward and fingers and toes crossed that you find the best pathway together with your medical team and that it also fels like the right choice for you in battling the prostate cancer ’beast’
I haven't read this whole thread but just picking up on this comment you made I want to say that you are looking here on the forum within the advanced (stage4 usually) group of brothers and sisters taking care. Anecdotal experiences here aren't going to be as positive probably as you would hope to see.
Interresting that you’re stating a ’ fact / truth’ ; that prostate cancer can not be cured. Sounds like you and your minority knows better or have scientic evidence in total contrast of what is published by the scientific community regarding the ability to actually cure prostate cancer or for that matter, any other type of cancer.
Scientific" evidence is redundant when the subject conflicts basic reasoning. For any cure to be real and not a gimmick, the prime causes should be fully understood and measures to prevent it from happening be available. That is enough an argument at any court to condemn anyone promising PCa cures. Expressions like "curative intent" are formally used as intentions can't be prosecuted.
And still you are stating a ’truth / fact ’ that prostate cancer can’t be cured without producing any evidence (scientific or not)that nobody treated for prostate cancer have been cured and that this is the real ’truth / fact’ presented by you and your minority.
Beg to differ and we can agree to totally disagree
First you will have to define "cure" and then give an example of a member of this forum that has been "cured". For each one "cured" I will indicate ten (10) NOT cured.
I suppose you are totally aware of that this forum (advanced prostate cancer) is a very small drop of all people diagnosed and treated for prostate cancer. Just by stating your fact that prostate cancer can’t be cured you are basically telling that all publications from the science world about cure rates, proof of no recurrence and etc. is not to be trusted and that what you say is the real truth.
odd maybe but not only. No cure for my cancer so it is all about QOL for me. Even when there was possibility for a cure 24 years ago I took QOL. Funny how some criticize my decision and yet there are several guys on this forum who went SOC and are right where I am but they did it in less time. I don’t treat numbers, I treat problems and pain. I’m told chemo will be my next treatment and I’ll take it only if it will improve my QOL, not some friggin numbers or scans.
Your mentioning your Gleason score but do I understand it correctly that you still don’t know your diagnosis (T1 to T4 and etc.), if the cancer localized, locally advanced or advanced with mets ?
From my basic understanding, the higher the Gleason score the higher statistically the prostate cancer will spread into areas of the body. That said, you can have 4 or 5 with no mets but with the higher probability to spread you should kick it’ ass as son as possible
You first have to have some treatment; for example Radiation with ADT in X amount of time to hopefully see that PSA drops, hopefully undetectable levels and stays that way before trying to come of ADT. Hopefully the PSA stays low even when T-levels comes back. If not, then intermittent ADT could be the way forward.
From my basic understanding your are not qualified for active survelliance with your Gleason scones. Perhaps someone in this forum with better knowledge can share its opinion.
My own totally personal opinion; you have a wife and a chill so, you should whatever it takes to try to give them a long future with you in there lifes.
You have both a high Gleason score as well as an extraordinary high PSA level. You are a very high risk patient and I would not be concerned with SE from ADT. I too have G-9 cancer. I chose high dose brachytherapy plus two years of ADT. I just finished my ADT. Except for the hot flashes, particularly towards the end, it was a cake walk. Investigate and research. You will discover that your best chance for survival is to do the same. You can still experience intimacy although you will “shoot” blanks.
Just to clear out. He don’t have this high PSA (it seemed it was 10.78 and not 1078 and he typed a new massage about that).
Otherwise, I agree with you on hitting the cancer hard, radiation therapy, boost if possible, ADT and perhaps even Abiraterone. Take the time and maximize the treatment with the intent to kill the cancer ones and for all.
You should have waited for the PSMA scan before posting this. We do not have all the info in order to make recommendations. A high Gleason score can mean the cancer has spread but there is not enough info. If it is localized, there are different treatments than if it has spread.
Weight resistance exercise is the only true defense against ADT. It will keep you ahead of some fatigue, depression, and loss of muscle mass. You may have to look at your sexuality in a different way. You have to be creative which can lead to a deeper intimacy with your wife. Honestly, there may not be a cure yet for you, but if you find the humility to accept what you can't change, you may discover a strength in yourself that you didn’t know exists.
If/how far it has spread cannot be determined - imaging is a look but not complete (learned first hand). I never saw ADT/chemo as curative.
My intent since my diagnosis nearly ten years ago, at 57, has been to, if it comes to it, to defer ADT/CR and chemo as long as possible.
I did have successful RP but my cancer had spread, then unsuccessful salvage RT-it missed some, then salvage extended lymph node surgery with frozen section pathology method. If I had a do-over I would again have RP and also ePLND with frozen section pathology method.
This may be difficult and I understand that but at this stage you have incomplete knowledge of your actual cancer prognosis and also incomplete knowledge of potential treatment options based on your diagnosis.
So I suggest you wait for the results of the scan/mri/biopsy, etc and come back with the whole picture so the knowledgeable guys here can really help educate you on the treatment options.
In the interim if you have not done so before complete your bio. It really helps us give good advice and knowledge based your specific case.
I don’t want to over share too much of my private life with my wife, but I can say that while my libido (and sexual activities) have been reduced to zero, I have never been as close and intimate with my wife than now. She, too, is my soulmate and we hope to get past this, but that requires me surviving. ADT is difficult, but much preferable to a slow, painful death. I’m 65, btw.
By the way, my RO called my treatment (28 sessions of EBRT) “curative,’” but also said my chances were 50/50. I want to try all that I can to be on the right side of that equation.
All I can add is "Dude, you're only 59 years old, with a wife who loves you, don't even be talking about 5 good years vs. 10 or more bad, etc." I suspect your wife would like to have you around longer, even at the expense of a less-awesome sex life.
I was 69 at diagnosis two years ago, PSA 20, Gleason 10, and my PSMA PET scan showed spread outside the prostate but still confined to the pelvic region, which qualified me for "curative intent." 44 sessions of proton therapy and two years of ADT later, I'm still undetectable (PSA and, unfortunately, testosterone too), and neither my wife nor I would do anything differently. Yes, the loss of a degree of intimacy is hard (though it's not total by any means). And unlike you, I hadn't been in a good workout habit going into treatment, so despite my efforts, I've lost muscle and gained belly fat. But I'm off ADT now (at least until PSA starts rising), and trying hard to make up for years of fitness neglect.
One last note, check your provider's info portal for your PET scan results. I had mine within hours, didn't wait to hear from my doctors. I've found that to be true with most test results.
Good luck, treat aggressively, and live as long and well as you can!
You could choose Xtandi monotherapy. This works better than Lupron and you keep your testosterone and thus, albeit reduced, interest in sex. The Embark trial demonstrated this result. Xtandi is a lot more expensive than Lupron.
I think both drugs are about the same price for those without insurance. The AI says each is between 10,000 and 13,000. Hoping you've got insurance or some other program to cover all or most of the costs.
hi. Another Gleason 9 here. With another option to think about.
You didn’t say how much of the prostate was cancerous. In my case it was a small amount of Gleason 9 (about 5% of the prostate). SOC with Gleason 9 I radiation (brachyboost) plus 2-3 years of ADT. But like you I was worried about the side effects. On the other hand, RP for Gleason 9 seemed too little as it could recur. I chose door number 3 - a trial with 6 months of intensive ADT to kill any escaped cancer cells followed by an RP to take care of the motherload. The trial I was on is over but there is a similar one called PROTEUS you can look at.
Very happy with results. 6 months after the RP no incontinance, T came back fully (since ADT was short), some ED but manageable. Four years later, no recurrence so far. Life is normal
But here’s the rub. I believe I did well because it was only a small amount of Gleason 9. If I had had a larger amount, I would have gone with radiation plus 2 years ADT.
If your PET scan is clear (it sound like you haven't had a bone scan/CT) you should follow the POP-RT protocol which has a 95% success rate and involves 2 years of ADT:
Your fears are unfounded, probably a result of your reading stories from men who have had life-long ADT, which is required for advanced PCa. As far as you know now, you do not have advanced prostate cancer, you only have localized high-risk prostate cancer. Take what you hear from men on this forum as not applying to you.
So, after 2 years of ADT, your testosterone will probably recover, and you will have the rest of your life symptom-free. Sounds pretty good to me.
Yes his presence here at this moment I won't try to write all in my thoughts but he brings so much and gives so much of himself to this forum.
Follow him and you and your dr.'s will have intelligent discussions, you'll have things to present and better understand your condition and treatments.
Tall_Allen - not to hijack this thread, but is what I got sorta the POP-RT protocol? I just never heard it called that.
My fraction totals seem slightly higher than those noted on the link you provided (50.4 to whole Pelvis, ~55 to PSMA PET positive LN (lymph node), and 70 Gy to prostate+SV (seminal vesicles), all delivered simultaneously using 28 fractions, using daily CBCT.) but it sounds similar.
I guess I’m wondering if ADT alone is enough in my case or whether I had to continue my added Abiraterone. I’ve paused that (lotsa bad side effects, I think) in the hopes that the Orgovyx will be enough.
The POP-RT protocol is designed for men with no detected lymph node metastases, only high risk of lymph node metastases. Men who have had lymph node metastases detected follow the STAMPEDE protocol: 3 years of ADT + 2 years of abiraterone. There is a clinical trial now using 2 years of ADT and apalutamide for that situation.
Thanks. Any information of side effects with apalutamide? I’m taking a break from Abiraterone (like 5 weeks) in order to see if these cardiac and pulmonary problems are related to Zytiga.
Ah, I’m just realizing that Apalutamide is for castrate-resistant men, which doesn’t describe me. I guess I should hold off on that until I might need something like that.
I think I’ve seen Brysonal have a combination of ADT and Apalutamide and there is no mentioning that he is / was castrate-resistant. Abiraterone, now when you have generics instead of Zytiga is much cheaper (here in Sweden Anyway) but Apalutamide is extremely expansive (yet again here in Sweden) but perhaps this is not case for you Jpburns.
From one Danny to another. I was G10 PSA 9.6 at 50 and absolutely sure I was going to die. 40% of gland cancerous. CT/bone scan and MRI showed no spread. PSMA was still in trials so I wasn’t offered one. SBRT X5 to prostate and 26 months of lupron+apalutimide. 4.5 years later and NED. Last 2 PSA tests 0.17. I lifted weights 2x wk, spin classes 3x wk, walked 5+ miles day. I never stopped having sex although it was significantly diminished quality. 4 months post ADT testosterone recovered to a higher level than before treatment. I didn’t gain weight or lose body mass. It was difficult for sure but I did it. You can do this too.
Another 62 yo w/G9 and lymph node spread. Did 8 weeks imrt and closing on 24 months of lupron, aberaterone and zytiga. PSA has been undetectable since starting adt. Did it suck... yes. Would I do it again... absolutely. My father's prostate cancer treatment was only radiation therapy (the distinctly less pleasant version practiced 30 years ago)... he's still here at 93... and that should give us all hope.
SleepingCat, abiraterone is generic for Zytiga. My husband is on 1,000 mg of abiraterone a day along with prednisone. And he has an Eligard injection every 3 months. (Same drug as Lupron).
By all means take your poll. However, expect some ‘absolutes’. Expect to variously be told there is no cure, what your ADT side effects will be, the ‘best’ drug to take, how to avoid ADT entirely with supplements, what combinations of therapy you should employ, which diet books to read, stop eating dairy, etc etc.
The disease is too heterogeneous for any of this to be taken as truth. Anecdotal evidence and individual testimony is worth what you pay for it.
In particular, those who tell you no one is cured are wrong; what is true is that very few who would testify to it are on this forum. There are more men than ever in decades long remissions-but they don’t ‘live’ here.
It is also true that if you have any distant metastases, or possibly even you don’t, that a long remission/cure may not be your future, However, that is no more a certainty than any of the rest of the well-meaning advice you’ll get. Especially with the shortening arc of medicine today.
The only probable sure thing is that your first shot at curative treatment-should you attempt it-is your best one, for several reasons.
Finally, the only absolute definite-without argument-cannot be refuted sure thing is this: The more fit and strong you are, the better your outcome will be, the better your likelihood of retaining sexual function and libido will be, and your side effects from all the possible drugs and treatments will be lessened. In some instances they may even be eliminated entirely.
Train as hard as you safely can no matter what-especially if you opt for ADT-and you’ll be extra glad you did. Great luck to you!
I would add that too few oncologists really understand the trade off between quality and quantity and properly take into consideration the patients goals. That means giving the patient enough solid information on risks as well as benefits. Every intervention has a cost - whether it is anxiety over a test, time wasted sitting in waiting rooms or travelling to clinics not to mention all the potential side effects.
Hang in there and it is a journey taking one day at a time and appreciating every day you wake up and are feeling good...You can read my bio but I am a Gleason 9 as well. in short 25 EBRT, HDR Brachy, going into 2nd year of ADT..Only pamorelin shot every 6 month better known as chemical castration shots. working for me with PSA <0.10...2 more shots left..was taking Bicalutamide but was screwing with liver values so stuck with a castration shot. I hate that word but its a fact..yes you can use viagra or whatever...i do but losing your libido sucks but you get through. testosterone loss as well but heck you can live with that too. you exercise heavily so you have a good foundation going in. i did as well. a runner and havent stopped. was a 43 minute 10k before all this started now about 49 minutes. who cares i have my life and a good quality of life..excercise every day with weight training...doctor considers me cured and told me statistically i will likely die of something else.. but you live with cancer forever in any case since it is part of you...in any case one day at a time being greatful for every day....keep on excercising..your PET CT scan is coming and that waiting sucks to see if you have spread or not but there are great treatments today..so live long and hard...i dont like this quality of life discussion...5 years, 10 years whatever...that is tomorrow what is important is the power of now...
First, you need to know your PSMA PET results...then review your treatment options after such results are known. Have you had a prostate MRI...if so, the results? You had bone scan and CT scan, and both negative?
I had one sample, of 18, that was 4+5, and that was <10% of the sample....all other samples benign. I recently completed 28 sessions RT with a "focal boost "to primary tumor area detected by both MRI and PET scan. Now completed 5 months of post RT ADT.....supposed to do 13 additional months, though studies show additional benefit of doing more re metastasis-free survival and cancer specific survival. The 18-20 months supposedly maxed overall survival. At you younger age, guessing the longer duration of ADT is more beneficial than for someone who is 70+...I'm almost 76. I had decent T level of 580 and still a decent sex drive...T now <1 and BARELY any sex drive/libido, The other side effect is bothersome but not life-changing hot flashes.. ....fans help with that!!! My PSA had climbed from 8 to 12 1/2 over 2-3 years....that motivated me to proceed with treatment!!!! Hopefully I didn't wait too long...horse out of the barn? PSA now 0.02 after RT and 5 months ADT...I think/hope that is a good sign for long-term success?? No guarantees in this business.....4+5 guys face the reality of much less long-term success than lower Gleason score guys!!!
It is not impossible that you could do RT + 6 months of ADT and have great long-term success....the odds are better with longer duration ADT. Being younger, you should have better luck with T recovery after ADT....much more aproblem for us oldies!!!
On intermittent ADT there was an article in the NEJM a while back. Basically it showed slightly worse outcome for intermittent. You wil find if you Google. However it takes a long time for testosterone to recover and probably not quick enough for you to be worthwhile.
I found ADT with added enzalutamide awful due to side effects, then switched to apalutamide also pretty awful but everyone’s experience and expectations differ. I can list the problems if you want.
I am off the lot feeling back to normal fitness and getting a second opinion from an experienced oncologist in Edinburgh to discuss all the options. At the moment I want something that retains good qol, and interferes as little as possible with daily life
Yup, I forgot to mention that on the advice of my oncologist I started with ADT and bicalutamide which hammered my PSA, followed by switching to enzalutamide. The latter was sold as a "novel" androgen receptor inhibitor". Beware anything sold as "novel"....I really did not keep my brain engaged adequately and did not enquire sufficiently deeply.
On kickbacks as I live in the UK there is less room for that - apart from paid-for trips to "conferences" etc etc . But as she was an "academic" I guess there are other motives - like lets gets a lot of this under my belt so I can write a paper.......am I cynical?
It is interesting that my bicalutamide, suggested by my 'European medical team', was 1USD/day, self-administered and picked up at variety of pharmacies as I traveled about. My US medical team at that time very strongly favored Lupron. An interesting side-note is that American medical team, inclusive of my surgeon, radiologist and onc, lost interest in me as I seemed to in them.
I am striving to expand my awareness of role medical contracts, volume discounts and pricing discounts in medicine.
Yes, I find it puzzling how many “cocktails” there are for this ADT - and winder about the reasons there are so many and data on the efficacy of the various methods. Good luck and thx!!
It pays to look carefully at the published data as some of these drugs over the age of 70 have little effect on longevity. The simple fact is that blocking androgens also leads to increased risks of type 2 diabetes, cardiovascular disease etc so one ends up trading one risk for another. eg despite my active lifestyle I rapidly put on weight with apalutamide, and triglycerides went through the roof . Back to normal now....
I understand all of your concerns and had a similar diagnosis, mine was localized with higher PSA. I had a different mindset due to MO telling me.it was an "aggressive" cancer, Immediately started Firmagon, no spike in T and PSA started dropping, next stop RO and extra area coverage IMRT narrowed to prostate midway 40 total sessions, the prep for each session is difficult, bladder full bowell empty no real side effects after 10 months, could come at some point but no regrets so far with a chance at remission.MO moved me to Eligard for convenience and we started Doublet adding Abi / Prednisone, this created challenges with blood sugar and blood pressure but under control now.
This is happening at a prominent University hospital and my MO will not waver from 2 yrs doublet and maintain a 3rd year on Eligard. Since I responded very well, undetectable PSA he is very positive on the outcome.
Having been a gym rat most of my life playing college sports etc I was able to keep the workouts going especially motivated by reading results here.
A lifesaver for reduced fatigue and depression, I try to workout for an hour every day I can. I was able to maintain strength but did lose size in arms maybe 20% upper arms, I really concentrate on maintaining what I have and mix in 30-40 min aerobic.
Hot flashes greatly reduced, better sleep, can still be very moody at times.
My wife has been very good about me having zero libido and I mean zero, mixed in some Cialis with good result.
A couple of odd things, no underarm oder at all and if you trim body hair most will not grow, better head hair growth tho.
I may be a little over board but research any supplement I use to make sure it does not fuel PCa, for example still uncertain about Creatine, a mostly plant based diet and a few eliminated items such as chicken and egg yolks to avoid too much Choline, again maybe overboard, eat a number of things daily like white mushrooms, seeds, nuts, hot peppers, and more.
Sorry for the long winded response but if I had to do it over would not change anything, at 18 months currently with an eye on stopping Abi in about 6 mos.
Could it resurface, yes, but even a few combative treatments remain like salvage radiation and supplements like Pectasol, from this site a wealth of information and came to realize the term "Warrior" spoken here really does apply.
Here’s my situation, I too am Gleason 9, that’s a deciding factor for me. I hit it hard.
Radical prostatectomy, Lupron + Abiraterone and just finished 38 sessions of radiation this summer.
I’m 62 and am also in very good shape and had a very active sex life.
My situation out of the gate was Stage 4A, with Mets to lymph nodes only… most of which were removed during RAPL. After what was deemed by the Rad Onc as “curative” RT, I am at undetected levels.
The goal of early aggressive ADT was to halt progression, shrink the footprint and weaken the cancer so the RT would be most effective.
In my case we are hitting this hard and fast before it has a chance to metastasize further.
Dr’s also gave me a slim hope of possibly being cancer free.
My last Rad Onc visit, she said, if it does come back in 8-10 yes, there will be greater advances that we can leverage.
Yes, I would trade the overhead of ADT for being able to live and see my unborn grandchild.
At first, I just wanted to ride this out. I was not of the proper mindset as after one year, I find I can endure this.
The worst part for me (having epilepsy) was moving anti seizure meds, which made me suicidal. Those 3 months were a nightmare.
Nothing, I mean nothing could hold a candle to that rollercoaster.
Sex wise, I’m in the minority… I still have a libido and we have relations once a week down from 3 times pre-cancer. Libido isn’t as strong, but it is there!
Unlike some, I’m still very active and have lost weight.
ADT for me, isn’t as tough as it is for some.
Without it, my chances would have been diminished.
Thanks… As a note, the effect of Lupron/Abiraterone on the cancer was demonstrable…. Imaging wise, several nodes were no longer discernible and the “footprint” had shrunk to 1/4 to 1/3 the size…. As viewed and compared between a before and after PET/PSMA scan.
Wholly worthwhile to put myself in the best possible position prior to RT.
Hi DannyMan, you could be my hubby writing this - exactly same age, diagnosis and relationship! We’re 2 years in - hubby 62 this month. His diagnosis: locally advanced Adenocarcinoma, T3B, N0, M0, PSA 8.3, G9 on left, right side benign.
What’s your T score - sounds like you’re “locally advanced” and not “advanced” - there’s a big difference! Also gleason score relates to aggressive levels of the cancer not how far it has spread!
Hubby treatment plan: bicalutamide (ADT) oral tablets from 16th Sept 2022 until end of October then went into 3 monthly Zoladex HT injections which he’ll have for 3 years completing Aug 2025. 23rd February 2022 he completed 5 chemotherapy infusions of Doxetaxal (to hopefully prevent long-term reoccurrence) it was described as “icing on the cake”. He had HDR brachytherapy 5th May 2022 - then on 31st May he started 20 rounds of radiotherapy which he completed Tuesday 27th June 2022. His PSA has reduced steadily and on 24th July 2022 his PSA was undetectable and has remained so. So far, so good - he’s feeling really well, back to playing football and running again and lifting weights and mentally he’s positive and happy. He has gained weight (15lbs) and he tires easily but both known side effects. Our sex life has significantly changed but not gone - he has a pump and we are still intimate - you can make your relationship work. We’ve no idea what the future could bring - there is no inevitability about the cancer reoccurrence after treatment is completed so please stay positive - we’re loving life and probably more importantly we’re really appreciating life too! Good luck to you - stay strong and positive x
I am dong intermittent ADT. Ask your doc if you are a good candidate for Orgovyx.
I started it when PSA was 13.4...twenty eight days later my PSA was O.39 after that it was undetectable and stayed that way until my MO thought it wise to take a 'vacation' after 10 months on Orgovyx.
It took 20 months for my PSA to go from undetectable to 2.4 recently and I am now back on Orgovyx.
The beauty of intermittent ADT therapy is it preserves your QOL.
IF you go this route, your sex life will be impacted as it starves the cancer of its fuel--testosterone. Keep a work out regimen and good diet and get used to some hot flashes.
only ADT...I was diagnosed over 9 years ago and had RP in 2015...PSA came back quick...then had 40 sessions of radiation to prostate bed/pelvic region. That lasted for a couple of years...then came pelvic lymph node involvement which included putting pressure on my ureter and backing things up to kidney....then a very complex surgery to remove lymph nodes and repair and replant ureter to bladder and have stent in ureter for four months. ...that worked for about a year....then more pelvic lymph node involvement, but since I have had two surgeries and radiation. The only viable option was ADT. Long answer to short question, but my situation is different. You still have potential curative therapies to look into. None available to me at this point...so it's a classic case of Whack-A-Mole.
Two thoughts....Your PSMA PET CT will tell the tale. Be advised that Urology has the worst nomenclature of any medical specialty...i.e. 'salvage radiation' really means salvage the reputation of your surgeon who said you would have a cure. 'erectile dysfunction'....another example. Also, parenthetically, I would say DO NOT BUY INTO THE DRAMA....Prostate Cancer is over treated. Get second opinions if need be and make sure you are comfortable with your medical team. If possible, have your wife very involved in your diagnosis and treatment and trust her judgment and intuition re: the people involved in your case. Go get em.
DannyMan said of ADT: "... does it get to the inevitable resistance level I’ve read?... if that’s the case, why not put off the horrible side effects... I’d much rather have 5 pretty good years than 10 not so good, or 15 bad..."
Castrate resistance eventually happens to ADT, but I think you still want to begin ADT early. Early ADT might cure or delay the advance of cancer. Late ADT against advanced cancer shrinks mets and is palliative for pain. I don't think ADT causes the not-so-good or the bad years, but puts many better years in front of them. And ADT for me has certainly not been horrible. I barely notice the side effects of Orgovyx and Abiraterone, and at age 82 have never felt better due to exercise.
The only regret I have about my cancer is that I waited 2-1/2 years after initial treatment to start ADT, after it had already spread.
You may want to follow the PATCH-III protocol, which substitutes Lupron (etc.) ADT with transdermal estrogen ADT. The Phase-III results were presented last week at ESMO, and they showed no difference in metastasis-free survival between Lupron (etc.) ADT and estrogen ADT.
However, there are fewer bad side effects with estrogen, including reduced hot flashes, no osteoporosis, lower blood glucose, lower bad lipids (LDL), higher good lipids (HDL), lower blood pressure, less fatigue, and better sleep quality (due to reduced intensity and frequent of hot flashes).
It's not a standard of care yet, and you should frequently monitor your PSA, T, and E2. Estrogen therapy increases gynecomastia and mastalgia, however. Overall quality of life is better compared to traditional Lupron (etc.) ADT. Google the papers by Ruth Langley et al (2008 - 2024) and Nick Russell (2017).
I guess it is cheap, so paying out of pocket is not a problem? I doubt it is easy to find an MD to prescrive it for RT + ADT protocol? If very cheap, insurance coverage not a big issue. I'm dangerously close to osteoporotic....in fact , I am, when including fact of Mom's hip fracture in FRAX calculation. Terrified of hip fracture, estradiol sounds great,,,,,,maybe would even let me skip the scary bisphosphonate bone strengthener? On the other hand, the gyno is a fear. Did they publish probability of that happening?
Sorry, I see you included that in the graphs....... gyno almost 100% after 12 months.....yikes!!!!!!!!!! Is there any preventative that can be done for that????
I assume Google will help me find the link to the study your read?
Yes, fracturing a hip is a very serious thing, and worth preventing in every regard.
Gynecomastia is a cosmetic thing. Yes, the probability is high, more than 80% from the Patch study. I have it myself. You'll get used to it, and my wife doesn't mind a bit. You will also have nipple tenderness and transient mastalgia (breast pain) when you roll over in bed, for example, or rub them. Otherwise, they don't hurt. But, that's a small price to pay for preventing osteoporosis, in my book, and for treating prostate cancer if you do high-dose E2 ADT.
Google scholar the papers by Ruth Langley in the UK and Nick Russell in Australia. Or, send my your email and I will send you the .pdfs.
I'm hoping to get RT, but I don't know if Medicare will cover it or not. They irradiate with electrons, not X-rays. SO, the penetration depth is a centimeter or two, not many inches as with X-rays. So, side effects are minimal. Another option is out-patient surgery to remove breast tissue. I might consider that if I don't get RT.
Getting gynecomastia and mastalgia is one sign that the E2 treatment is having an effect!
You may want to get a baseline DEXA scan done now., before starting treatment.
Regarding costs, you can get compounded E2 gel for $100 for a 3-month supply in the USA. That's about $1 US per day.
Thanks Bob ! Don't we need a prescription in order to obtain estradiol in USA? I'm high risk Gleason 4+5, completed IMRT with focal boost in june, and now doing 12-24 months Eligard......scheduled for next 3 month injection NOW. Maybe late to switch? uessing the new MO would be VERY resistant to the idea, and would not prescibe estradiol. I understand why he wouldn't...if nothing else, liability concern as not SOC.
Are you similar risk category and chose RT + ADT/estradiol?
MY PSA last week was something like 0.02......3 months after RT, is that type of number meaningful re long-term results? I thnk I read something on that, but memory vague....study somewhere buried in my hundreds or more of PCa bookmarks...not well-organized unfortunately. T is like 0.2.....that seems favorable?
I had SBRT 2 months ago and my PSA is down to 0.08. I also had a "panic" about that time and went on Orgovyx at about the same time, at the insistence of my MO. She's not opposed to estradiol therapy, but said she wouldn't know what to do with a serum estradiol number. So, I got my PCP to prescribe it instead. Unfortunately, my last E2 was only 55 whereas I was reaching 200 pg/ml. Something is keeping it down, and I don't know what is causing that. I apply a fairly large amount of E2 gel. I'm awaiting a recent E2 lab report, and that will be very interesting. It;s possible that the Orgovyx is somehow keeping the E2 down. I have 3 months left oil Orgovyx, and then I should be able to have a higher serum E2 level.
That's great that your PSA is down to 0.02. Congratulations! Your treatment plan is working. But, you are an excellent candidate for estrogen "add back" to bring your levels back to a healthy man (30-40 pg/ml). If you could get it to 100 pg/ml, you can probably stop osteoporosis in its tracks. That's not a lot of supplemental estradiol. Probably 1 large E2 patch (0.1 mg/hr) would do the trick. But, you have to monitor your E2 level. And, remember that E2 ADT is not standard of care, despite the very positive PATCH study results. I'd stay on the Eligard, but add tE2 to treat hot flashes and osteoporosis. Probably should get a DEXA scan, too.
Hey, 59 here too. I went with RP at 56. Found bad lymph nodes afterwards and started ADT and radiation. I’m two years past radiation and 3 months past ADT. T has not recovered but I’m optimistic. Libido is about zero but should return with T. I have some nerve damage from surgery so performance wasn’t good anyway.
We had a great sex life before and I want it back but without libido, it’s more of a problem for my wife now.
Here’s what I want to tell you. My life is great. My wife sticks with me through every step. My sons love me. I have parents and brothers and granddaughters who love me. I play golf, hunt, fish and work in my yard and help my parents too. I still work full time in a high profile job. And this was the case when I was on ADT too. Sex is the only thing missing and I haven’t given up on that. But if that doesn’t work out, I’m still ok with that.
Last thing. When I was in your position, I had tremendous anxiety too. Couldn’t sleep, etc. my reg doc put me on 75 mg of Effexor. This really helped me to focus and to sleep without stress. I later found it probably helped with hot flashes while on ADT because mine were never as bad as some I’ve read about here.
My advice is to shoot with both barrels and live life.
I was diagnosed at 59 earlier this year similar biopsy results but PSA was doubling every 1.2 months which is really bad. Find out your doubling rate. I already had lesions in two vertebrae before I knew I had PCa. There's a lot of expertise on this site but IMO, it's hard to imagine how you can avoid ADT. The side effects suck. No two ways about it. However, the alternative is much worse. Without ADT and radiation I'd be about a year into a 2 year painful death. The drugs work and they do what they're supposed to. My quality of life is very high.
I don't have a lot to add but only say find a good experienced physician. I have had many and now rely on Dr. Sartor at Mayo Rochester. It's worth the trip for me.
One possibility for you is to hit the cancer hard for awhile, 18 months or so, then see if milder treatment will keep it in check. That's what I did. I now take periodic abiraterone + prednisone with vacations. The vacations are great! I had a good summer off treatment. Today I get another PSMA scan since my PSA is headed back up so I assume I'll restart the treatment soon.
Abiraterone + prednisone is not so hard to take. I'll endure it all winter. I make myself stay active. It's essential. Do not be afraid! There is hope for you. I remember how I felt 9 years ago when this began for me. Be not afraid!
For what it's worth - 8 years ago age 66 Gleason score bad 7 had 3 months ADT and Radiation. RO said I should be cured but you never know. Another RO suggested I continue ADT for at least another 3 months. My primary RO didn't think that was necessary, so I was glad to get off it for obvious reasons. 8 years later it has returned and spread. Had I continued with ADT would I have been better off, who knows, but in hindsight I should have continued and would continue if I could go back. Now I am looking at ADT for probably the rest of my life. My point here is do everything you can now for best results. A few months or a year is nothing compared to a much longer time ADT free down the road.
Ditch the fear, it gets you nowhere. No one can tell you what your ADT side effects will be and you also won't be able to find many who can tell you the side effects from letting the cancer spread either ... cuz they're dead.
Like a lot of people here I've been on ADT for 4 years after a stage 4 diagnosis. Choose the best therapy that gets you the best quality of life and least likelihood of cancer spread.
If that is what you say, and it includes Lupron, embrace it, don't run from it or feel sorry for yourself. ADT is not the greatest experience you'll ever have but you can adapt to it.
Intermittent ADT isn't a plan IMHO but discuss that with your oncologist. If things go extremely well you can probably adjust your therapy but you have to confront the cancer head on, looking forward, never backward.
Everyone is different so you may have a different experience. I’m also in great shape as a cyclist. Can squat 400 pounds, leg press 600 and keep up with people in their 30s. I was on Lupron for about a year while I had radiation and here’s my experience: Still lifted weights and did a lot of HITT workouts. Muscles suffered a little but mostly in tone, not in strength. I got a little paunch which is funny because I’m a typical cyclist and pretty skinny. Had hot flashes, which my wife was both supportive and also found hilarious.. My sex drive mostly went away but I could still get an erection somehow but really not as pleasurable. I had virtually no anger at anything, and overall pretty happy. Apparently, testosterone is the thing that makes you yell at other drivers and stuff like that. I’d say listen to Tall Allen. Do the treatment and kick the disease or control it and live a long life. Approach this with humor if you can because that will make it easier.
You wrote: "I had virtually no anger at anything, and overall pretty happy. Apparently, testosterone is the thing that makes you yell at other drivers and stuff like that."
I think the lack of anger that comes with the loss of testosterone is rarely brought-up when discussing ADT side-effects.
As a child I might have been a terror to other kids but as an adult I never was one to yell at other drivers
Aside from a few occasions, I pretty much kept my near-constant anger bottled up. Not because I fear expressing myself but because I have the maturity to understand the need to be civilized and that other people need not have to suffer from my impatience which comes from the hyperactivity part of my ADHD.
However I have found myself missing my anger since on ADT. The quiet anger was a driving force that made me who I was professionally and otherwise and it helped push myself to overcome challenges head on. Since being on ADT, I am too passive. I have to rely on will-power alone to push myself to address challenges despite the fatigue and brain-fog but that is suboptimal when it is not fuel by the sweet-controlled anger that came with being an adult male with testosterone.
Now if I succeed at a challenge it simply feels like "Phew... At least I managed to do it" but when I had anger it felt like "Yeah! Completely crushed it! Take that moth*f***er!". Much more satisfying
If you have a habit of weight training, the adt won't affect your habit. This will be in your favor. The hardest thing for those who aren't in the habit is to start. Your lifting weight may decline as your T declines. Your libido surely will decline. You and your wife will have to be creative. She will need reassurance. There are other affects but it sounds as if you are in optimum shape to start. Your T will return in about 3-6 months after stopping adt. So that is a short window of behavioral change. Good luck.
ADT is very effective, but it is a serious drag to lose Testosterone. You might look into BAT therapy. John Hopkins has had a lot of success with that, although they mainly use it after ADT has failed. It's a method of alternating High T and ADT which is said to resensitize the cancer cell, but it has the added benefit of being able to have a regular ADT vacation.
I have not lost my energy or drive to stay fit and have managed to gain muscle. I’m focused on doing as much as I can as long as I can. I’ve found fear of the future robs you of what you have right now. Stay positive 🤙
Get the ADT. I suggest Orgovyx pills rather than the shots The side effects are not as bad and the testosterone recovery is quicker. Of course the libido will disappear. That's the purpose of the ADT. In many cases, the testosterone recovers as well as the sex drive. The hot flashes are a little difficult to deal with, but they are only temporary. I did not experience the extreme muscle loss or weight gain that some people did. Probably because I just tried to stay active and not be a couch potato. Your life is the most important thing at this point.
Yes, the couple I’ve seen seem to have about 6% better outcomes for longer term ADT. That was my original confusion- 6% for such an added amount of misery?
I simply don’t understand how at this point there isn’t more data in this considering the harshness of ADT on QOL…
If your PSMA PET is negative, your Docs should menton the option of RT + brachy boost + shorter term ADT. Gleason 9s are huge part of the annual PCa deaths. I AM NOT in misery from my 5 months of ADT. If loss of libido is considered misery by you, then you are right. At 75, living is more important than sex. I guess others have suffered more than I have so far. For me, he worsening of my already low density bones is my biggest concern with ADT.....and the drug to combat the bone problem has it own potential terrible side effects...evrything is a gamble!!!!!!!!!!!!!!!!!!!!!!!!!!
Let us now your PSMAPET results, which could change evrything for your treatment!!
A 67, PSA 20.6, G9, aggressive, I did radiation, HDR Brachy twice and 24 months Lupron. 18 month off ADT then back on and Looron with Nubeqa for 3 yrs. Now on tenth month vacation at 76.Seems to me the choice is living or not.
Hey Danny man. Quick question: Are you confused yet? If not, wait until the ADT gets its fangs into you. I swear that I can no longer think my way out of the proverbial box. But that is just my humble opinion. Except when my wife gives me a concerned look.
Take your time figuring this out. It is my experience that the doctors will take little to no time informing you how your QOL will be affected.
Hi Danny. My husband's story is similar to you. 59, Gleason 9 (4+5). No symptoms other than lots of peeing. PSA was 36 during his annual checkup. We are both endurance athletes. We traveled around the country and got 4 different opinions from the top cancer institutions. Here's what we learned:
1. All the studies point toward ADT being the start of treatment. How you react, and how your cancer reacts to it will vary. My husband was put on Orgovyx along with Nubeqa as the ARI. Very, very minimal side effects and he can still do all the sports he loves (it's been 3 months now). Our doctor also told us he doesn't think there will be speed and 2 days later we learned it was in the lymph and bone
2. I can't stress this enough - get genetic screening done. Not just for you, but on your cancer. The results of this will greatly influence treatment decisions. We were going back and forth between chemo or no chemo but since he has 0 genetic mutations and no circulating DNA, the docs feel it's not necessary at this time. Circulating DNA is also currently one of the best indicators they have of long term survivability so this was a nice relief.
3). Exercise is key. Keep it up. Everyday. My husband has no fatigue and we think it's bc he's exercising everyday.
Good lock to you! Praying for favorable Pet scan results!
If you do go on ADT keep hitting the gym. Consider taking daily low dose cialis to prevent penile atrophy. Consider taking tamoxifen or anastrozole to prevent gynecomastia. I chose HIFU (full gland ablation) as my treatment option. Research it.
In the UK bicalutamide can be used as monotherapy especially for men who wish to try and retain sexual function. My husband chose it mainly to help maintain bone density. But he also feels 'more himself' than when on ADT which seemed to dramatically lower his mood and energy whilst he was on it.The difference in time to progression between bicalutamide and ADT for advanced prostate cancer is slightly worse - about 6 weeks less time to progression is all i can find and his urologist and oncologist agree there is not much difference. Although the oncologist's first choice is ADT for his (oligometastatic) PC as per the NICE guidelines she is fully supportive of the choice. If/when it fails then different forms of ADT and androgen blockers can be tried. Liver enzymes need to be tested regularly as there is a risk of them becoming elevated. It can cause breast pain and breast growth and tamoxifen can be prescribed to help prevent or treat this.
In addition he is having 30 grams of flaxseed daily as this may help reduce androgen levels and may also reduce proliferation rate albeit in small trial preoperatively.
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