My SOC oncologist also read these studies and told me that I could do ART if I wanted to but she thought that the decision for ART or SRT was 50/50. The deciding factor for me was side effects and time. So, no ART for me. I'll do SRT if and when I need to. Hopefully never.
SRT or ART? I was about to do ART but... - Advanced Prostate...
SRT or ART? I was about to do ART but read these studies just in time (less than 2 weeks before radiation was going to start).
52 Replies
•
Weren't you LN+? If so, none of that applies to you. They excluded men who were LN+ from all of those studies.
It is a mistake to wait with a positive LN. That means the cancer has already metastasized, and is easily able to migrate and live outside of the prostate. Lymph moves slowly, but the cancer can certainly spread in that fluid. You have a chance now to wipe it out before it travels beyond the pelvic lymph nodes.
The highest level of evidence study that applies to your situation is this one:
europeanurology.com/article...
I wrote this article about it:
prostatecancer.news/2017/12...
Your best hope is acting quickly and continuing with 2-3 years of ADT.
I don't know your specifics but I can tell you about my case. I had RP last fall, ECE+, SVI+, and LN+. My doctor recommended ART along with ADT. I then visited Cleveland Clinic and John's Hopkins for additional opinions. Both agreed with that course of action and cited a study to back up their positions (I can't find it right now or I would send the link). Finished ART 2 months ago so can't comment on long term effects. Short term effects were minimal...some fatigue, nightly bathroom visits, but tolerable.
I recommend you review the links provided by TA and ask your doctor for her opinion of those.
RSH1,
did you see this? Oct. 8, 2020
medicalxpress.com/news/2020...
• in reply toGeorge71
Thanks. Good info.
• in reply toDJBUNK
Thanks. I plan to look over TA's links and ask my onc.
• in reply toTall_Allen
I'll ask my oncologist again. She didn't think doing ART would be preferential for me vs. SRT. I'll ask her why (she did say that she'd examined some research. Interesting to know what it was).
Tall_Allen• in reply to
I suggest you.email her the Touijer study and ask for her comments.
• in reply toTall_Allen
I have a meeting with her next week. I'll send her the study in advance.
Tall_Allen• in reply to
Let me know what she says.
• in reply toTall_Allen
Will do.
This was a link provided in one of the other articles.....
medicalxpress.com/news/2018...
Excuse me for this dumb question I guess.... when radiation is the primary treatment, what then for lymph nodes? Does primary radiation typicaally include pelvic lymph nodes?
with a dispiriting 2nd opinion on my MRI thursday, ie upgraded by medical school radiology, facing high probability of significant cancer at biopsy....bad last 2 days!
I'll be 72 by treatment time and not keen for the surgery option!
I am 73 y.o. and had a G(4+3=7) Grade 3 VERY aggressive. With my other health problems, I could not have surgery.
So I got VMAT RT 3 Gy X 20 Fx and Lupron Depot 22.5 mg/12 weeks X 2.
Results = PSA from 20.4 to 0.03 ug/L and T = <0.2 nmol/L or <5.76369 ng/dL.
Not too many SE.
Good Luck.
thanks Doc! did the Doc discuss treating or not treating lymph nodes ? his advice?
My prostate volume was 45.83 cc and he irradiated a volume of 139.57 cc(more than 3 times the prostate volume) , so the Seminal Vesicles and all the Lymph Nodes in the pelvic area were irradiated too.
He was treating me as a Grade 4, but due to my response to the ADT, he stopped it after 6 months instead of the 18 to 24 months that I was supposed to receive.
One of my BIG problem is that I have a Marginal Zone Lymphoma which have a lot of secondary effects similar to the ones from ADT. So which cancer cause what?
• in reply tomaley2711
Maybe Tall_Allen can answer your question. I think local lymph nodes might be irradiated when they do the prostate bed. When they do whole body radiation perhaps some non-local lymph nodes are treated? I'm just speculating though.
Tall_Allen• in reply to
They never do whole body radiation (except with targeted radiopharmaceutics). That would kill you.
It is true that surgery and external beam radiation give about the same results in high risk patients. That is why I never recommend either to high risk patients. Instead, the combination of external beam therapy PLUS brachytherapy to the prostate PLUS at 18 months of ADT (called "brachy boost therapy") has been shown to provide FAR better outcomes.
prostatecancer.news/2018/03...
The decision to treat pelvic lymph nodes in high risk patients is based on the probability that cancer is already there. We will soon have PET scans capable of detecting some of the larger loci of cancer there, but even then, we have to rely on known probabilities to treat what we can't see.
Yes, I think the prostatecancerfree.org graphs show that option for high risk.....though you warned me/us about possible bias because of funding of that organization? The various links that guys have posted here seem to lead to conflicting conclusions...or am I totally misinterpreting what I am reading in a cursory manner...re when to radiate lymph nodes? Is it the increasing risk of secondary cancers that would stop Docs from just proceeding with lymph node radiation? Or, losing those lymph nodes can have other equally harmful health ramifications? Having the medical school radiologist upgrade the same MRI images from PIRADS 3 at Kaiser to PIRADS 5 at OHSU has me panicked! Now with the dilemma that Kaiser will do max sampling (20-30 samples)with cognitive biopsy using operatory sedation(but Not GA) and additional proven Iodine infection control( at my request..thank you Kaiser Doc!) OHSU will not not agree to highe nmber of sample , won't agree to sedation and wont' agre to the Iodine protocol..they DO have the fusion equipment however, but too inconvenient to transport it from OHSU Urology clinic bldg to nearby OHSU hospital operatory for sedation...only If I scream in pain and demand that clinic biopsy be interrupted would they then agree to do the sedation at hospital!!
OHSU urologist actually claimed that my greater volume 84 cc prostate would make it easier to find cancer with lower number of sample..contradicting common sense and everything thing I have read about nmber of sample s that maximize result s for different size prostates. Maybe she meant that my relatively larger lesion 1.3 x 1.0 cm (12 months ago) would make it easier to find worst Gleason cancer with fewer samples.....but that is not what she actualy said.....though she did say, as we would agree, that larger lesion makes cognitive biopsy success a greater probability...thus possibility of just having Kaiser do the cognitive biopsy. This has me scratching my head...which way to go on biopsy. With Pirads 5 , 70% probability of very bad news, PIRADS 3 was just 15-20%! So, if somehow fusion biopsy doesn't find the bad stuf, there will still be high suspicion and repeat biopsies.....if higher sample count biopsy with Kaiser cognitive biopsy somehow doesn't find the bad stuff, I guess I'd have higher confidence level? and feel less need to rush back for another detested biopsy!
What a journey...first talking my urologist into sending me for Kaiser MRI, then Kaiser denying OHSU fusion biopsy, appealing with 100 page treatise, winning that...thenOHSU making me wait 2+ months just for consult to ask 3 simple questions...number of samples, infection control, sedation..thenshocked to be told Kaise r erred on PIRADS, then finally OHSU negative responses to all my questions.
Should I be happy about our medical system? well, I gues compared to msot countries of the world, I should count my blessing, but....???
What would you do anyone/Allen? Should I post this? yes, I vented!!
MpMRI results vary a LOT with the experience of the radiologist. You should have 4 cores taken from area with high PIRADS scores, only one from other areas. Transperineal with pelvic plexus nerve block would be my preference - lower rates of infection with transperineal, and the nerve block will numb the entire area so you won't feel a thing. Much better than general anesthesia.
Research usually only conflicts when levels of evidence is not taken into account. Large multi-institutional randomized clinical trials seldom conflict. Lower levels of evidence seldom conflict when randomization is simulated (e.g., propensity score matching or inverse probability weighting with large samples and full data, mandelian randomization). Observational studies often conflict because of selection bias and limited patient data,.Lab studies (mice and bench) are seldom true in humans.
Allen - Haven't I read that nerve block is quite often SOC at some clinics.... even for TRUS biopsy? Thanks for reminding me ....not sure I heard the OHSU Doc mention that when describing their pain control measures> Do remember her saying that transition zone lesions such as mine are sometimes a challenge as far as effectiveness of pain killer injections .....difficult to reach? Yes, I've read about transperineal, but to my knowledge OHSU fusion biopsies are offered only via TRUS. You don't believe that more samples are warranted for 84 cc enlarged prostate.....research I came across showed better diagnostic results with more samples? Perhaps your belief that very ..high probability that highest Gleason will be found in that PIRADS 3-5 area....very unlikely that highest Gleason will be found in other areas?
Studies I read indicated nerve block plus sedation resulted in best scores per the patients' responses to post-biopsy questionnares?
thanks so much for highlighting the nerve-block.....I'll ask OHSU to confirm their exact pain control method.....would have been wise to bring along a recorder!
Followup after your mention of nerve block..... " Peri-prostatic nerve block is more effective and provides better patient satisfaction than intra-rectal lidocaine gel when used as anaesthesia for prostate biopsy. However, the administration of intra-rectal lidocaine gel induced little or no discomfort and was better tolerated by patients. Despite this moderate advantage, most patients still prefer the use of peri-prostatic block if they were to have a second biopsy."
Is this the type of nerve block you mentioned? would this have different levels of effectiveness when comparing pain scores for cores taken from different regions of prostate? OHSU Doc concede that more pain might be felt when sampling area of my lesion in right transition zone....a top radiologist at OHSU described my lesion as being located anteriorly. He said it was concerning , but gave no PIRADS score, as it was not an official evaluation....just a courtesy look at my 1.5T images from Kaiser..he said the the 1.5 T images were acceptable and save my $$$$ as far as paying for 3T at OHSU.
common sense that more sampling, thus more time, could necessitate additional nerve block injections? Kaiser doesn't offer transperineal, OHSU didn't mention that more expensive option, and not excited to start from square one trying to have Kaiser cover transperineal at Providence Hospital urology clinic. Sure there would be resistance.....I guess Medicare is better in that scenario.
Is Kaiser your only option?
Here's an explanation of the transperineal biopsy:
My understanding is that here are two main kinds of nerve block. Periprostatic nerve block and pelvic plexus nerve block. Periprostatic seems to be more widely available.
bjui-journals.onlinelibrary...
To get either, you have to have a doctor who knows how to find the right nerve on an ultrasound. Some places routinely do them, others don't. It's up to you to ask. I had a periprostatic nerve block on my last biopsy, and it was a breeze compared to my first two (which were (1) w/o nerve block and (2)general anesthesia. The urologist explained that it is also important to inject lidocaine on the way in to the nerve and wait for it to numb each area before moving forward.
If you have suspicious areas that have to be sampled on the anterior, I think transperineal is even more important.
Thank you sincerely Allen!! I have read about most of what you mention...but your retention is probably at a higher level !! Yes, unless I sign up for Part B medicare, my insurance is with Kaiser..my wife works there. Kaiser gets a lot of bad press, but my experience that they are very good in many ways. They are, as acknowledged by OHSU nurse , way ahead compared to MyChart used at most places. Docs almost always respond to my message inquiries within 1-2 working days...anxiously awaiting reply froom my Kasiser uro right now....I could give up on my fusion biopsy at OHSU and go with cognitive at Kaiser...with sedation and extra infection precaution with povidone iodine solution. Plus, more extensive sampling than OHSU agreed to do.....probably because she knows pain will become an increased issue with more specimens! I guess 90% that worst cancer (4 or 5) is found in that PIRADS 3-5 area. I feel good that I did push the Kaiser uro to refer me for MRI pre-biopsy, and Kaiser insurance didn't interfere......as you know, unfortunately, pre-biopsy MRI is not "SOC" for most insurers, at least for 1st biopsy. AUA now supports MRI first, and so does Britain's NHS! Makes tons of sense...get it done right the 1st time!! Combo biopsy finds 25% mor significan tcancer case....but let's start with just standard trus and take a hit on accuracy....for ex-engineer, ridiculous!
Since neither Kaiser nor OHSU offered transperineal, assume neither offers. In past GA has been used for transperineal, but evidently newer techniques and locals make procedure more bearable without sedaton?
Wow, I understand that some clinics have done, or still do, biopsies with only lidocaine gel...OUCH!!!! OHSU Doc insisted most complaints are about insertion of US device..not actual sampling snaps.
Much thanks about emphasizing that any Doc has good experience at targeting that nerve using US. and if they miss?
Maybe peri nerve blocjk for TRUS and pelvic plexus for trans biopsy?
I'll watch the video..thanks. Have you catalogued all these links using bookmarks, or some other system for filing? Impressive I must say!! hopefully it is rewarding for you to do all the work that you do to help men. Docs just don't have time to help educate men as shoudl be done! Scheduled out all day..then home to family time....do they have scheduled research time during businees ours? I guess there are a few that go beyond to keep up with research and give that extra time to patients. Most of us just feel we are just a product rolling down an assembly line...or is that just me?
Your PSA doubling time will be your best advocate. Less than 6 months, go for it. More than 9-10 months, watchful waiting. The gray zone in between, toss a coin.
• in reply toJustfor_
My PSA was zero for half a year or so, then went up to 0.06, and then started dropping and is currently at 0.028.
Justfor_• in reply to
This 0.06 is an outlier, ignore it. ( I had one 0.12 that afterwards dropped to 0.02. One year+ later 0.06). Since your 0.06 how many samples do you have? IMO, for establishing a PSADT with minimal confidence 5 samples are required and for a plausible BCR an exponential regression coefficient well in the 0.9xxx.
• in reply toJustfor_
I've had 13 tests since the 0.06. Went from 0.06 to <0.01, then back to 0.05, then held for a month or two, then declined in last 3 tests to 0.028.
Justfor_• in reply to
If tango is correct in that the PSA values were recorded during ADT, than the 3 study cohorts are not representative of your case. Some study/studies accepted ADT during RT, but in principal it was a rising PSA without ADT that triggered early SRT (with or without ADT). So, if you are brave enough stop any ADT you are currently on and let your PSA kinetics guide you further, Staying in ADT and postponing RT I don't think is a good plan.
• in reply toJustfor_
My PSA recorded during ADT or the study participants?
I think I'm missing something because it looks like all of the participants had PSA values of >=0.1. Mine is 0.028 and it's been over a year since I was on ADT.
Is the study information showing me that I should wait until my PSA is greater than 0.1? (that was what I had decided to do after discussing with my onc but I can always revisit the issue with her - btw: ADT isn't much of an option for me according to my onc [ and ratified by me :)])
Justfor_• in reply to
Just posted a theory of equating stalling internal T production by external supply to ADT. In case it has any substance, your low PSA is not indicative of your PCa status. The only way to know is stop taking external T and see. what your PSA does. If it stays bellow 0.1 find some new hobby or take your wife for a tour around the globe.
If I understood correctly your posts you had the prostatectomy 2 years ago and then you were treated with ADT with estrogen, zytiga. casodex and testosterone. .
Consider to treat your cancer with whole pelvis radiation and short term ADT which can control the cancer for years (90% at 5 years and about 80% at 8 years) and allow you to stop using all these potent drugs with many undesirable side effects.
astro.org/ASTRO/media/ASTRO...
• in reply totango65
You remember correctly.
When my testosterone was zero it was a living nightmare for me. I told my wife that I wanted to die rather than continue. Boobs, no muscles, no libido (zero!). Everyone has different priorities but mine is not quantity of life, it's quality and quality is very subjective.
I stopped the estrogen over a year ago. Also the casodex.
Fortunately I don't have any sides other than occasional insomnia and some stomach issues (Likely because of my diet. Diet, exercise and a very low dose statin every other day has dropped my cholesterol from 220 to 135. My primary doctor isn't sure what each component has contributed but thinks it is likely a combination.). For the most part the high T has me feeling like I did when I was 20. I slept a lot better but energy and mental attitude are the same (hard to say for sure because that was over 30 years ago).
Thanks for the info. I plan on discussing TA's info and yours and George's and also what I've found with my onc. If she thinks that if I do ART there is a very high probability that I will live longer and be able to continue the SPT, then I will discuss with my wife and go from there. It was actually the radiation onc who first got me thinking about not doing the radiation. SEs in his experience were not great. I appreciated his info though because he told the truth without sugar coating or glossing.
My onc doesn't want me to do ADT again. She saw what it did to me and she is surprised at how well I've done on SPT. SOC predictions were dire. I've had almost two bonus years of life. I'm very thankful.
Russ
• in reply totango65
I don't know if I'm reading this correctly but it looks to me like the PSA bins were 0.1 <=PSA <.1 and .1 <=PSA <.2. My PSA is 0.028.
tango65• in reply to
Are you on ADT? What is your testosterone level?
I tend to agree with Justfor_
As you know, my situation is similar ... 0.03 four months post surgery with micro met. lymph nodes. they are telling me 4 and one half years later that I really haven't lost anything ... (as the study just concluded -- some can and have waited 8 years – others didn’t need treatment at all)
the second thought is -- (as three R/O have admitted -- if I have a micro met in any other spot anywhere in my body --- I will be right back where I was ... 0. something ---- and waiting for it to show on scans or start ADT and hope ADT lasts for 20 years..
When you do the radiation if it messes your bowels or bladder up (with no certainty it will get every speck of it) you have to live with the side effects -- either way -- for 20 years. Radiation after surgery is more likely to cause side effects than with a prostate and Orojell
It has taken over four years for it to get to 1.37 taking nothing but occasional Avodart and supplements. Many here have done the radiation as soon as PSA of any kind occurred and it didn't get it anyway. There may be a time I will do radiation but the likelihood of it getting every speck is really not that great ... in my opinion.
maybe not in the past but now they are making big strides -- I would think a slow crawling rise in PSA is not all bad – all they can tell me is 65% to 80% chance no BRC for 5 years...
Kwon won’t even schedule you till recurrent PSA is 1.5 I’ve been wanting to see him for 2 years.
All my docs are against whole pelvic radiation – they said even if it worked it will likely leave many problems retention etc..
Reading your info exchange regarding externally supplying T, I have come to develop a theory: What if it is not the T per se that feeds the PCa, but something within/linked to the process of making T? Getting the body external T, will obviously stall the internal production. Isn't this just what the conventional ADT does? Two opposing routes leading o the same goal.
I think it may be something like this: 30 year old guys rarely get PCa --- prostate cancer takes years to develop and shows up usually in old guys -- the older you get the more likely you will have clinically relevant PCa -- i'm sure you've heard that 50% of all 50 year old guys have PCa 70% of 70 year old etc ... this makes the likelihood that low T / high DHT balance (which occurs in virtually every older guy) either contributes to or accelerates PCa since the older we get the lower our T levels and higher DHT ...
Our PCa cells take T and convert it to DHT in the licensing (dividing process) they then have to expel all the T/ DHT to start a new dividing cycle --- super high T plugs the PCa cells up where they can't function ----
ADT takes away the bodies ability to make T altogether... and slows the growth (in some people for decades) likewise super high T slows PCa almost as much -- but with super high T you don't become CRPC ...
the worst case is to have low T --- that is the state where the PCa grows the fastest ... even then it still may be metastatic and not have symptoms for decades .. with little or no treatment... more times than we think, people show up in doctors offices 85 or 90 years old and find out they have mets everywhere ... they had it for decades..
So since low T may bring it on --- and super high T reverses the process and kills PCa cells almost as well as ADT --- alternating between no T and super high T makes sense --- just avoid in between ie. low T -- it may be what got us here.
I think when doctors take a peoson off ADT the problem may be that they just let their T come back naturally -- that may result in months of low T --- the thing we should be trying to aviod ... instead give them super high T and leave them on continuous super high T -- the PCa progress may slow to a crawl and take years to go up an point or two...
Dr Khear did a study on TRT with PCA patients after initial surgery or radiation treatment.
youtube.com/watch?v=Re795wS...
sciencealert.com/a-man-s-pr...
• in reply toJustfor_
Interesting hypothesis. From my own experience I feel that exogenous T is different than endogenous T.
For the first month of SPT my libido was through the roof. Then as my endogenous T production tapered off, my libido fell. Eventually down to once a week. I recently added HCG and since it mimics LH my libido is going through the roof again.
I don't know what else it does differently. There are some theories about SPT and how it controls PCa (independent of the source of T) but I don't know if anything has been proven.
Justfor_• in reply to
It would be interesting if they could differenciate somehow the exogenous, so as to be able to split down the origination of the combined during the serum tests. If found that the exogenous T completely wiped out the endogenous one, then your case would surely merit a more in depth research. I also suspect that your intolerable reaction to the usual ADT is a mirror effect of the above. Your body fiercely fights by making you miserable when you try to steal its T then goes on vacation when it gets it in abundance readymade.
I had whole pelvis radiation and i did not have any significant negative side effect. The Pollack's study had around 1% of grade 3 negative side effects. The new methods of radiation are much more precise than in 2005 when I had my treatment.
thats encouraging -- but all 3 R/O don't want to do but the prostate bed and 2 rows of nearby lymph nodes that drain the prostate -- and a quarter inch spot in S/V area (only spot of uptake on PSMA scan) nothing else ...
• in reply totango65
Progress has been made and it made it less non-appealing to me. When my radiation onc went over the SEs he said that there was an 80%+ chance I'd have diarrhea. 0.5% I'd get another cancer from the radiation exposure. 25% chance I'd have some ED. I don't recall the rest of the numbers (I think I'd tuned out by then).
I recall him saying that some of the SEs would go away in 4 months when the treatments were over. Some would get better over the next year or so. And some (like the potential cancers) would get worse. I think he said something about urination issues but I don't recall his stating that it was an issue that the majority faced.
I'm still entertaining possible radiation therapy. But likely only if my PSA goes above 0.1 or 0.2 or if my onc changes her mind. Right now, based on my progress (or the lack of progress of my PCa) she seems more in the "ain't broke, don't fix it" mode. She's SOC all the way and when I first saw her she wanted me to do lupron followed by radiation. I balked and she said that I would likely have severe bone pain soon (I didn't ask her how long "soon" was). Something seems to have happened positively. I don't know what. Estrogen followed by caso/duta followed by SPT? Maybe they got most everything out during surgery? (I was told that happens once in a blue moon) I don't think it the PCa was misclassified. Mayo and JH had essentially the same diagnosis. And the stats were certainly pointing towards a rather quick return. My Mayo docs were certain that my PSA would go crazy within 3 months of RP.
George71• in reply to
scmp.com/lifestyle/health-w...
• in reply toGeorge71
Thanks. I'm of the mind to hold off but will discuss again with my onc.
maley2711• in reply to
somewhere in all these studies and apparent contradictions in findings is the truth ? Main problem may be lack of long-term random studies of the different , even opposite approaches. theories are fine, but just theories
I certainly will and thanks for the good wishes. We all need as much luck as we can to keep this beast at bay.
Best of luck to all!
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