apologies first for another longish verbose posting !
I am in a dilemma after my last oncology appointment - I have T2cN0M0 G9 locally contained PCa following a failed HIFU that was previously twice biopsied as G7. After a clear PSMA showing locally contained with no SV involvement I had 20x3Gy to prostate only (based on MRI & PSMA) finishing last December. Now been on ADT (Zoladex) for 10 months (or 8 months adjuvant).
There is a suggestion that I stop ADT now rather than go to 18-24months given my pre existing extensive polio paralysis. There is the fear that the potential damage from the longer ADT might be detrimental to my QoL and physical health such as bone health, muscle mass etc outweighing the advantage. I don’t find the obvious side effects SO difficult to deal with and apart from taking biphosphonate to preserve my bone health and being very careful but not obsessive about diet - I was managing OK.
Yes, OK living with 0.6-0.8 testosterone for months now isn’t fun - and I can’t exercise. And managing my mood and anxiety can be problematic but the positive is a PSA of 0.01 for many months which I’m keen to exploit and I had in mind at least 18 months was worth a try.
They say ultimately it’s my call and they will go with what I want. But they feel uncomfortable with the cost/benefit risk of longer ADT is marginal as we are talking about only a 8-10% statistical advantage over 10 years.
I have more or less decided to have the next implant next month and just monitor but I know there is quite a debate about the length of ADT even in my high risk locally contained case.
Curious what others feel - and if anybody has had to make similar choices - to be honest this feels like a gray area where individual patient vs clinical population studies for the standard of care are quite hard to deal with.
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A friend of mine had a very similar diagnosis as you and they (NHS) only kept him on ADT for 9 months. The advice from those on here are usually more like 18 to 24 months.
Yes, difficult to know if that’s an NHS decision made on what basis - all the research I have read says 18 months probably but perhaps 12 for some but no good trial evidence to say 12 is equivalent to 18+
I’m kind of being given the choice/decision either way.
The majority of users here are from the USA where Lupron is a form of "religion". Ask your docs if possible to switch you to an anti-androgen monotherapy. In Europe, first gen Bicalutamide is prescribed at 150 mg/day (which in my experience is a "galactic" dosage), but there are also the second gen lutamides (enza, apa, daro) that are currently trialed combined with ADT vs alone with equivalent outcomes. One interesting property of lutamides is that by impeding T from reaching certain cells the body thinks that there is not enough T production and consequently mounts up T production.
I had extensive polio as a child (total paralysis and in iron lung) so I already had extensive muscle weakness that has returned with age - I again use a wheelchair when out and also for post polio patients weight bearing and or hard exercise, even walking any distance for me actually causes further muscle damage and weakness. So that route is not an option for me and I do gentle exercises only.
I was pT3b post-RRP and did eSRT with 12 months of ADT with abiraterone for the first 8 months, having experience BCR.
Adding the abiraterone was quite radical at the time but is now reccomended for high risk T3. The plan was 18 months of both, but I couldn’t stick any longer. I did a lot of research and held many discussions to try to work out if I should go longer and got much the same answer as you’ve been given - the extra time buys very little benefit.
Clearly our situations are not directly comparable, but the nature of the question and the chances of getting “THE” answer are much the same - no one is going to have a magic answer for you, and no study will ever approximate your position. You just have to weigh it up yourself, in concert with doctors you trust. I thought I would stick 18 months no matter how bad it was, but I couldn’t, and the doctors agreed it added little prospective value. I think many of us have a bit of a martyr complex, thinking we need to “earn” a cure by suffering. That’s just not true…. And there’s no right answer.
Just to make it harder for you - PSMA is not definitive is showing “all clear” - it just doesn’t have the spatial resolution or lower detectivity limits that can rule out recurrence - I was clear on PSMA post-BCR, and many men are
Four years on, I remain undetectable, despite a Decipher score of 0.91 and SVI, ECE etc. - I hope you can achieve this too!! Good luck….
I think they believe that there is a chance that if I stop I may go into long term remission given it’s locally contained and as far as they know (?) not spread and not in SV. So they are suggesting come of the ADT and wait whilst your T returns (if it does) and see what happens to you and your PSA
First, understand the impacts of ADT on your sexual health...now, that may not be important and if its not then this podcast wont make much difference. If your QOL includes sexual health use ADT, i.e. Lupron, wisely.
Next, will you benefit from ADT...if you have not had it there is a report included with a Decipher genomic test of your tumor specimen which will tell you. Apart from this report a genomic test will also reveal how aggressive the cell type is you are carrying and give your more confidence the use of ADT is warranted...see MIN 16:03 of this podcast.
Next what length of treatment via ADT is most effective? Here is a study that does state 'more is better,' but you must balance that against both QOL and your personal cancer condition (grade, type cell, staging, etc)...
Finally, look at the percent GS 5 in your biopsy. This makes a significant difference in predicting OS (survival) and so adds to your confidence when choosing more aggressive treatment options.
Good luck...my story is that if I could go back I would not have used ADT so quickly...that is my story, but my GS was a 7...although my Decipher was a staggering 0.97 out of 1.0...that is why I hit the accelerator and went forward with ADT. For me Genomic testing is needed on top of GS visual classification...I believe we must choose more aggressive forms of treatment based on both GS and Genomic grading. ADT will not cure but it will extend progression at the expense of and impact to QOL...one of which is sexual health. The latter impact is just not discussed much as we as patients are totally consumed with treating the cancer at any cost...I have been there and done that. Rick
Well thanks very informative and being a psychologist I do tend to want some decent research based for my decisions independent of my other risks and complicating co-morbidities.
however not great for me as my G4+5 was 80% admittedly only in one site of 7 core but all fragmented so the report is an overall total for that site (10% 5 70% 4 20% 3) - for two years previous 2 biopsies and 3 MRIs had consistently showed G7 >10% 4 both times and the last one only 8 months prior to the G9. Everyone surprised and ‘just unlucky’ - of course despite the guided targeted biopsy I guess you can miss it. A lot of cores overall though to miss it in my case. So that prognosis suggests very high risk of recurrence within 5 years. Of course I had moderately fractionated radiotherapy with 20x3 Gy not RP where you can examine the whole gland and structure.
As for Genomic grading - I asked about this and was told that it wouldn’t alter my treatment plan for ADT of 24 Months - but as they now suggesting can stop at 9 months it does seem relevant information for me.
Thanks for the detailed info - I am trained in psychosexual therapy so the sexual and relationship impact of low T I was already only too well aware of.
OK, your pattern 5 mix in the GS pathology was only 10%! That is mid point between the two levels in the study I sent, so you are not in that bad a situation! Dont know if its proportional but at the 10% mark for pattern 5 (see your notes) you should be on the upper side of 80% probability (in this study) of cancer specific survival, with a P factor or 0.004! Those are very good odds indeed!
Now, if you also had a Decipher that was below 0.5 in score you could be more comfortable with less evasive treatment...adding ADT in my view is more evasive in scope. I disagree w your treatment team and if I were you I would ask for a Decipher; in the USA the surgical center must store tumor specimens for some years and a Decipher can be run on those samples...here is some additional material on Genomic testing...Rick
Re % 4+5 in biopsy, that refers to the pathology post RP, not the initial pre-treatment biopsy result. However, several nomograms do include biopsy % as a variable in the probabilities for initial cure.
...not sure it makes a difference. If the pre RP biopsy contains GS pattern 5 in the mix noted on the study what difference would it make make in predictive value if you wait, operate and via the surgical pathology find the same GS 4 vs 5 proportions? The predictive value is the same as far as I can see...Rick
percentages will likely be much different ...that is why. otherwise, they would use pre-treatment numbers .....those postop numbers are based on comprehensive sampling of entire organ, and used to help decide treatment postop, not preop.
Hi: I was diagnosed with T4N0M0 G8, 11 out of 12 cores cancerous in 2009. 72Gys EBRT/IMRT + 3 years Firmagon. (Dx was before approval of Zytiga, Enzalutimide, etc. ) No PCa recurrence (PSA is undetectable) in 14 years but ended up with T<15 ng/ml since then. T never came back. So there's that... But other than loss of libido and all that goes with essentially undetectable T since then, my QoL has been just fine. Still active, traveling, engaged with people etc. But no preexisting conditions like you have. It's not just medical considerations and statistics; you will have to decide exactly what defines good QoL for yourself. You didn't say how old you are, so that's a factor, too. Yes, it would have been nice to get my T back, but I'll take the tradeoff, i.e., no biochemical recurrence of a pretty aggressive cancer and diminishing odds it will return.
Yes, I have kept exercising through the years. Although now at 76 y.o. it's primarily long walks. I already had osteopenia when diagnosed. Yes, many DEXA scans, have received Zometa, Prolia and lately, Recast. Still have osteopenia but it hasn't gotten worse.
Thanks....I'm also osteopenic and ADT impact has truly frightened me. Which bone med has given you the best results? I'm a walker also.....keep forgetting to do the resistance training. Your SE results are encouraging , though mine might not follow your path?
There’s no benefit in treatment if the side effects of treatment ruin the rest of your life. I’ve stopped ADT twice, currently on a 6 year break, after chemo . I was originally T4N0M1, Gleason 9, 11 years ago.
If you stop, you can always start again, I stopped and started zoladex. I don’t know why people suggest if you stop you can’t start the same drug again.
You might want to find a group that discusses intermittent ADT. I know there’s one on Facebook. This group is for advanced prostate cancer (which you don’t have, (yet!)). So the experiences are pretty different to yours
Some videos on the topic from a professor at U Michigan.....he is especially interested in balancing a man's cure probabilities vs impact on QOL from different ADT durations.....
Of course , we now have results from some more recent studies, but that does not mean older studies are worthless, IMHO. Little debate that longer duration provides some additional cure probability......I believe he cites one study showing just a 6% advantage for going from 12 mo. to 18 mo. he strongly believs in his own brachytherapy expertise...achieved over many years of practice of course. Hvaen't checked....perhaps retired now?
Thanks for the link - there are two issues here for me - he specifically excludes LHR or lethal high risk from the rest of his presentation suggesting that LHR is ALL G9 and G10 who may well require long term ADT.
In my case I had HIFU which precludes using brachy therapy in a combination therapy approach. So my choice is now confined to RT plus ADT. The 6% refers to the VHR or G8 and below. My oncologist is saying to me maybe 10% different over 19 years .
I am a psychologist who has practiced as part of my specialism in psychosexual therapy and so am only too aware of the impact on sexual functioning, libido, drive and erectile function. Of course experiencing things yourself as a clinician is always more difficult- i attended a professional development day a few months before I was diagnosed myself and one lecture and eminent urologist was listing the horror to men of hormone therapy. Another colleague with PCa has spent 10 years avoiding HT by taking all sorts of other things as he had very low risk
I maybe think I know a bit too much and yet not enough and my professional life is perhaps not helpful! I do think that the choice ought to be with my wife’s input as it obviously impacts her as much as me. However it’s not easy for her to engage which is my fault as I am perhaps a little too detailed and OCD about things - not a good personality trait unless your a researcher and at work!
That was my plan - I did the first 3-4 months with my oncologist saying see how it goes. Well it’s not easy but it’s not terrible - yes I’m getting a bit weaker but I’m that isn’t a game changer for me as already a part time wheelchair user and can’t use my arms much.
I am just concerned as the last 2 appointments it is - so are you sure you don’t want to stop ? I begin to think there is something terrible I have missed that is going to impact my QoL or mortality more than anyone else !
The only thing extra I can think is my respiratory muscles and that might be irreversible if my T doesn’t return. I research Low T and respiratory muscles and it seems there is little evidence of an effect. The hit flushes don’t bother me, the mood I can deal with, sex is annoying but I and my wife feel it’s worth the risk, and muscle loss I gave anyway and used to it, cardiac risk etc is no different to anyone else……
Or am I missing something that isn’t being said !???
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