So after having 4 PSMA scans re sheduled at Oxford's Churchill Hosp, finally went in August 20th.The results show that here's minor involvement ( whatever that means) on the vesicles and nodes on both sides, the GS is 4+4 and 4+3 but the team leader still refers to it on the letters as " locally advanced".
I have now been referred to Prof. Hoskin to discuss treatment options. Given his level of experience and numerous publications it gives me certain reassurance.
Having said that, and if anyone is or was in a similar situation, what should be the starting protocol? I've read on this forum that ADT as a primary treatment always results in CRPC. So, should I request it as adjuvant, secondary to chemo/ rt? And what are some of the more successful ones, new generations? etc.
I know the ultimate decission is down to me, but I would like go be as informed as possible when the discussion starts.
At the moment my health is otherwise excellent, night trips as before, gym 2-3 times a week, cholesterol, organs and blood tests all normal.
Many thanks in advance to those who read this as well as those who might chip in.
Written by
Hotoneii
To view profiles and participate in discussions please or .
You are relatively young for PCa so you better have a long row of treatments in your quiver. First step IMO would be radical prostatectomy with extended lymph node direction and frozen section intra-surgery pathology. The forum here will vote for irradiation.
Thank you, but not a candidate for RP apparently, since there is "involvement" with s vesicles and local node(s). I would think this is the main reason why the team leader is referring me to a RO, Professor Peter Hoskin. I am just weary of ADT as initial primary treatment, since I believe this is the SOC here in the UK for cases like mine. I would like to explore more options if there are some. I would not discard using combination therapies that include potential enhancers to SoC, like metformin and/or atorvastatin, but need to first assert the facts before going in front of an eminence in the field
Both involvements have been noted. I guess you are hopeful of a one shot "cure". What if you have your RT plus 2-3 years of ADT, you are by then 66 y.o. and 1-2 years later you see your PSA climbing. What will you do then? If you ask this question today they will tell you that there are many options for salvage treatment after RT failure , salvage RP being the last in the list. Check them now so you won't be surprised at the age of 68.
I went into my salvage RT to prostate bed full of hope for a cure. I learned the hard lesson if the cancer has already spread beyond the radiation field the RT will not deliver on a cure. Back then and to this day I still do not see how ADT would have derived the cure. My sense then and still is that it would mask the remaining cancer until I hit the CR wall.
Although there are those in this forum and others that speak against surgery, nearly nine years post my RP I remind confident in that decision, as I am over six years post my salvage extended pelvic lymph node surgery - which had farther reach with no side effects than RT to the pelvic region would have.
Elementary reason prerequests that the mechanism causing PCa is fully understood and impeded before claiming cure. When this mechanism is unknown "cure" is like claiming solving a NON defined equation.
I am hesitant about making any definitive suggestions.
Let me start by saying I am now 78 (retired consultant physician), had radical prostatectomy in 2009, pelvic RT in 2012 for biochem recrrence and in 2022 with further PSA rise and PET evidence of tiny bone mets I (reluctantly) started ADT with a so-called "novel" androgen receptor modulators (enzalutamide - followed by apalutamide). My experience of this was lets say 'not good' and S/E were pretty awful. I regret that I left my brain at the consulting room door and was insufficiently inquisitive about the downsides.
I had made it clear to oncologist that quality not quantity of life was my goal (I dont think she heard me) and have been off therapy now since Feb 2023. PSA now rising and have a quandary like you.
My approach this time has been to book a second opinion from an experienced oncologist (Edinburgh my old stamping ground) and have set out some of the questions I have and my goals in a letter to him.
I would suggest that your starting point should be to list all the options you would consider (including clinical trials) and ask your guy to take you through the pros and cons of each and all options, including the evidence for use of adjuvants such as metformin. Having had your meeting, make no decisions, ask him to let you have a written summary of his views, go away to think about it, do some more reading and then have a second consultation with any fresh questions before coming to a decision.
Sorry I do not mean to sound in any way patronising but often we patients get pushed into making decisions too quickly because we are anxious, so I thought expressing myself in more general terms might be helpful.
Thanks, your suggestions resonate with what I had in mind. I know the chap is highly respected and just hope he has the patience to go along my line of enquiry. You didn't sound patronising, sorry you had to endure through your predicament.
I am sure others will or have commented but we all react differently to ADT. I am almost 80 now and started this fight at 77. I offer two suggestions. First, start reducing your weight now and increase your gym work to 5 times a week along with increased walking, etc.
Because of this I had little impact from ADT and radiation treatment. You will need to fight through some fatigue but it is doable.
Good advice, I wish someone had given me that advice when I started this journey over 5 years ago with widespread bony metastases , innumerable lung mass, as well as lymph and marrow involvement. I've gained more than 50 pounds, and it is very hard to take it off and keep it off.
Yeah most doctors skip the part about exercise and nutrition. Sorry to hear about your weight gain. However, it is not too late to start. I agree our metabolism changes but you may need some professional assistance with your diet and training. Give it a shot!
I watch my calorie intake, I walk, I do some resistance type exercises I used to do a lot of outdoor yard work, landscaping and woodworking / building in my garage. Currently, I'm nursing thoracic vertebrae compression fractures (T 4,5,6,7,8,and 11) as well as Osteopenia so my exercise regimen is greatly curtailed . But I move as much as the body will allow. I'm thankful to be alive and relatively healthy,(sans the cancer and the side effects of treatment)
Thank you, I'm active at the gym and fortunately in excellent physical shape. I will try my best to keep it up once therapy starts, probably triplet or something of that kind
Thanks, that sounds reasonable. This is the reason I want to see the RO and not just accept the standard treatment I was offered by a letter and a phone call from the urologist team leader ( who is about to be fired). I am not having it, they would need to work a bit harder. Until I see and discuss the images and extent of "involvement" nearby, I still suspect RP could still be an option, but I want them to explain that. I mean they are happy for me to take pills right away without checking hormones first, wtf?
Perhaps you can let us know if you are still reading comments given that shortly after I commented you were advised that what you read here is irrelevant - ?
I was diagnosed at 57 and based on imaging it seemed likely my cancer was already out. For all the known reasons I strived to avoid surgery. RT consultations at the Royal Marsden and other consultations including Professor Emberton and retired UK urologist Dr. John Wickham (John was a neighbor and is recognized as godfather of robotic surgery - he encouraged me to look into bracy) led me to surgery. Based on my imaging findings tumor location presented insufficient margins for all non-surgical methods. After nearly a year of consultations I selected surgery back home in Texas to remove the primary tumor burden as I wanted to defer ADT and the possibility of CR and chemo for as long as possible. I hip this helps. All the best!
Thank you for your suggestions, I am still reading comments. It's good that you received such expert advice from multiple sources and were able to make informed decissions. I don't believe deferring ADT will be one of my options, and neither will be surgery, almost certainly
Follow Hoskin's advice. You are going for a cure, so what you read on here is irrelevant. He will probably want you to have 3 years of ADT and 2 years of abiraterone along with brachy boost therapy.
TA said "3 years of ADT and 2 years of abiraterone along with brachy boost" radiation. Don't skip the ADT. I did declined ADT after external radiation, got radiation failure and mets because of it, and went on ADT + Abi late.
Age 63, Gleason 8/9 in 12 cores, no visible mets, extracapsular extension visible on MRI. Sought 3 opinions. Sloan Kettering said RP+EBRT+ADT for 2 years. Rutgers Cancer Institute said EBRT+Brachy Boost + ADT 2 years. I went with Rutgers.
Finished all radiation in May. Have been on ADT since March. PSA has gone from 25 to 11 to 3.5 to 1.4 to. 0.8 (last week). Hopefully it will continue to drop. ADT side effects have been minimal.
A cure would be great...Im expecting to be dealing with this until it or something else kills me. Every day counts and right now Im feeling pretty good.
Thanks for clarifying, I'm not sure if he meant 3 years ADT and then after that, abiraterone + bb, or starting concurrently all 3 together? I've read triplet therapy studies showing increased survival; candidates must be in relative good health. I'm concerned with 3 years ADT alone to start with and becoming CR, which is almost certain for most
He meant all three. (1) Brachytherapy is radiation seeds, inserted to give an initial boost to knocking the prostate tumor down. (2) ADT (androgen deprivation therapy) means a production inhibitor like Lupron or Orgovyx. (3) Abiratirone (Zytiga) is an ARI (androgen receptor inhibitor), like Xtandi, Erleada and Nubeqa.
A production inhibitor (ADT) with a receptor inhibitor ( ARI) is called doublet therapy. An ADT with an ARI plus a short course of chemotherapy with Taxotere (docetaxel) is called triplet therapy.
A common treatment plan is radiation of one kind or another, then 2 years of ADT and abiraterone together, with the abiraterone continuing for a 3rd year. Chemo for triplet is most effective if started simultaneously with the other two drugs, but has harsh side effects. Not all go for it.
I believe it usually takes 4-5 years to become castrate resistant. And if you don't take the castration drugs now to suppress your cancer cells, which you said already showed in vesicles and nodes, but are also out in your system, the metastases will become worse. And then you will have to start the castration drugs far behind the curve.
Thanks for the detailed explanation. I've read Abiraterone inhibits an enzime that helps produce testosterone. The SEs of triplet therapy sound concerning, maybe there are ways it can be shortened or mitigated depending on response
At 63, you are young and should be strong enough for triplet. At 81, I chose doublet (Orgo + Abi) but was afraid to add chemo Taxotere for triplet. But I have handled doublet so well, that I sort of wish I had chosen triplet.
Also........has a prostate MRI defined the tumors in your prostate? If so, another option might be external RT witha boost of RT to those tumor areas., plus ADT. While the boost strategy doesn't have as much data behind it, there are very positive studies for the boost strategy as an alternative to brachy boost. The brachy part may increase the possibility of urinary side effects.....but most men escape that I believe. I am on ADT now for 5 months, and walking and decreased caloric intake has allowed me to avoid weight gain...maybe I've just been lucky so far. Of course, you will be having full pelvic RT as part of the treatment. Good luck!!!
With nodes, it is doubtful that surgical removal would get them all....but ask the surgeon. It is aways assumed that there are more cancerous nodes than just those that are large nough to be visible on any scan.....even PSMA PET. I'm guesing that whole pelvic radiation is more likely to hit all cancerous nodes...ask!!!!
You can really find very good answers to most questions if you will be diligent in the use of Google, and also pubmed website. Don't hesitate to aska Doc for a study that reinforces his /her advice!!!!!
The great Docs will have specifics and not brush you off!!!
Don't feel rushed.....studies don't show any better result for men who decide in a month versu men who wait 6 -12 months....but the node dtection is concerning no doubt!!!!!
Studies show that combo RT + ADT gives you a better chance of living longer.......that does not mean that some men do not do great with only RT, but odds are worse!!!
Radiation, brachy boost, ADT, abiraterone. Good advice. My disease was in a very similar stage. I ended up in a clinical trial with a nearly identical treatment path- after post RP pathology showed a positive node and SVI.
If I’d had access to PSMA imaging I would have gladly taken it (and thus avoided the RP) but this was over 5 years ago. I could have traveled and paid a lot to get one but I declined.
It’s inconceivable to me that anyone with your pathology would be recommended RP. Do not get surgery that will almost surely fail, never mind about the other consequences. I am disease free at this writing, since 2019. The surgery is the only part I wouldn’t do again.
Your first shot is always your best one. Great luck to you!
Base your decision on a good talk with an MO. In doubt , get a second opinion from another one. With all due respect to everyone who gives you advice, it’s based on personal experiences or on “hearsay” . It’s like we probably all heard when we got the diagnosis: “ don’t worry, I had a friend with PC and he lived to be 100 “ etc etc.
Latest study by Xtandi for recurrence at 5 years treatment. The rate is 10% with ADT +Xtandi . The expectation (even clinical experience?) is adding chemo or RT (ie triplet treatment) will reduce that recurrence further, but no formal study is available so far.
Hi I’m also in the UK, Essex, and had a similar prognosis, I’m currently on triplet therapy which seems to be doing some good. I recently read this article which is encouraging.
Not overwhelming but I did get an infection on the 1st cycle which put me in hospital for 5 nights. Ok now and on cycle 2 so fingers crossed. Good luck with it all anyway.
All down to the Docetaxel knocking out my immune system. They’ve said one more go with full dose and if I get another infection they’ll reduce the dose. Fingers crossed.
Although you certainly should be well informed, ask many questions and inquire as to all of your options, if you trust Prof Hoskin with his experience and publications, you should probably follow the course of treatment he advises to you that can potentially result in a cure. I can't imagine this doesn't include several years of ADT.
My husband was similar, age 62, PSA 13, Gleason 4+5, with seminal vesicle involvement and extra capsular extension. 2 yrs of ADT + Abiraterone/prednisone + 39 radiation sessions. He just completed treatment. Now we wait. The ADT sucked, but we got through it and he worked out daily and ate well and kept slim and in shape. We are getting treated at a respected cancer center of excellence in the US and are confident this was the right choice of treatment for him after multiple consults. It may come back, but we are still hoping for a cure.
The Yiddish word famished has multiple meanings, including mixed up, confused, crazy, and stressed out. It is pronounced with the accent on the second syllable.
I should have used my street Yiddish that I learned in my youth growing up as a Shabbos goy in a Jewish neighborhood. The word is "Fish-im-eled" as in "I'm all fishimeled" (confused, crazy, and stressed out).
When you accent the second syllable it does sound ratherYiddish, doesn't it? Crazy, stressed out, confused definitely describe me at times. But that's what they said about Son of Sam, so.... I plan on dying with a bad joke on my lips.
Lol, I guess we are emotional animals. All our decisions in life are based in impulses, but still need to justify them with a logical argument. So it is and it isn't irrelevant at the same time.
"THIS" being meant to this forum, website and others like it!
If we are to surrender to the powers that be, ie, our medical professionals without obtaining knowledge or in depth understanding of the decisions we must make, then what's the point!
Diagnosed at 62 with Gleason 10 local, decided on radiation and ADT. Just about to finish 3 years ADT after 39 sessions of radiation. Currently PSA undetectable , exercise and diet ment only 3kg added. Feel great, have I been cured, who knows lol watch this space.
Diagnosed in 2019. I've had four rounds of Lute-177, 20 rounds of IMRT and 16 months of Lupron. I've just enjoyed a year and a half of a hormone holiday. Absolutely no treatments, I returned to running, training and even sex at 77, but now my PSA is rising again. After several months I doubled in one month but then I increased my aerobic workouts - cycling and running 4-5 times a week sometimes hard workouts. There are plenty of studies on the effect of exercise and tumor growth. The result is: still rising but only 30% now. At this rate I will be back on hormones in a couple of months (sigh) but I've had a great run (literally) in every sense.
Thank you for the detailed response. I've read that resistance/ strength training, not aerobics, give the most benefits; still in your case you had good results. Since you are not yet CR maybe it is a matter of pulsing the ADT for as long as it keeps working. Have you considered Bipolar treatment if you become CR?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PSMA Pet Scan results 
Lutetium-177 PSMA - A new experimental treatment
GA 68 PSMA PET SCAN RESULTS
Moving along
