1. 2008 diagnosed with prostate cancer, PSA = 6, Gleason = 4 (current usage at the time in Thailand, where I live). Elected to go with active surveillance.
2. From 2008 to 2023, PSA score gradually increased to 13.4 by early 2023. Two further biopsies (2014, 2019) gave Gleason = 6. Also had BPH, size increase from 45 ml in 2008 to 125 ml in 2023.
3. Late 2023, PSA suddenly rises to 19.5, so ends active surveillance phase. PSMA PET scan shows cancer just starting to break out of capsule into left seminal vesicles (pathology report: “small area at basal left lobe prostate involving left seminal vesicle, suspected viable tumour. Tissue study is suggested.”) Otherwise the PSMA PET scan clean.
4. Extracapsular extension puts me in high risk category, so radiation treatment and ADT prescribed, with 1st gen Lupron clone. ADT starts early 2024, and radiation treatment performed June-July 2024 (20 sessions). ADT drops PSA to 0.018.
5. Onco prescribes 1.5 years of ADT. About 1 year in, I have noticed an onset of arthritis, slight weight gain, some muscle loss, low energy state, constant hot flashes.
6. Given my age (72) I am particularly concerned about the arthritis, so have decided to quit the ADT in the interests of mobility. Justification is that (a) the extracapsular extension was minor, with area included in the radiation treatment, (b) intermittent ADT is a very viable option, as effective as continuous treatment, should it be required.
7. Question: Have I made the right decision, or should I continue with further 6 months of ADT and risk further joint damage?
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What is your view of the Zaorski analysis of the MARCAP data? Looking at OS, the HR changes very little between 12 and 19 months, while the HR changes more for DMFS and PCSM. Zaorski seems to prioritize OS maximization, and arrives at 19 months, though there seems to be little difference between 12 and 19 months. My MO gave this analysis a big nada......saying anyone with a primary or secondary biopsy number of 5 should always opt for more, not less, duration. I didn't ask him if he was suggesting Lifetime ADT with RT for Gleason 9-10 patients.
Another quickie.....is new presentation of ankle/foot edema more likely to result from ADT, Pelvic radiation, or something else....ie, just a coincidence? No significant pain.
I don't understand this. The Prostate Cancer News article which recommends 28 months for ADT with external EBRT only is dated 22nd Jan 2022. But there is a later paper (Zaorsky) dated October 2022 which demonstrated that the duration of ADT use with the maximal benefit, in terms of overall survival, was seen with 19.3 months of ADT use. I appreciate that the 28 months recommendation is for BCR-free, whereas the 19m is for overall survival.
Would it not be more sensible to look at overall survival?
I have this dilemma coming up as I was G9 (4+5) with no apparent spread outside the prostate on PSMA PET scan and had EBRT back in Mar/Apr 2024. ADT started Dec 2023. I was hoping to have my last ADT injection in June 2025 giving an effective length of 21 months by the time it wears off.
SSO, rhe data shows MFS increases with with basically lifetime RT....so that is what high risk men should do? My urologist suggested OS is the goal????
Thanks, TA, I appreciate your opinion. I'm not suffering hugely from ADT - i.e. no hot flushes, limited brain fog but sore muscles from exercise. My onc said 24-36 months originally, so I'll have another 3m jab idc to take me to 24 months and see where we are. My main concern is brittle bones from the ADT and I'm doing as much as I can to strengthen my hip bones in particular. There does seem to be a lack of good studies on the optimal length of ADT.
OK, ....looking again at that data he graphed, there seems to be little benefit for OS and PCSM after 12 mo, and certainly 19 mo.........though neither appreciably worsens with longer duration....at the same time there is a meaningful lowering of HR for detected distant metastasis with increased duration. That is your perspective, correct? Then again, when a man is suffering the impact of ADT, some non-guaranteed promise of a delayed metastasis will not always be convincing.
My experience with Orgovyx included some joint pain but later subsided after treatment ended. I did lots of exercising including stretching which I think helped me both physically and mentally. Since I was having salvage radiation RP after surgery, Doc recommended 6 months of ADT versus your 26 months so others may have better comments.
It’s important to keep exercising while on ADT, especially weight bearing exercise like walking and doing resistance exercises like light weights for the arms and step ups to strengthen the legs. What about trying a different ADT therapy like Firmagon or Orgorvyx for the remainder of the time? These drugs seem to have less side effects than Lupron with respect to joint pain. They are newer drugs and the mechanism they use to lower testosterone is different than agonist drugs like lupron.
i am on lupron currently and waiting on scans post proton radiation. I have the same issues. I understand they will pass but the bone and heart side effects do concern me. I think i would press on if i were you but i under dtsnd the quality of life decision. My wife and i have had the same conversation. Happy New years!!
I was G 4+5, no spread outside gland. I had EBRT, plus Brachy, and ADT (Lupron) for 18 months. You are high risk and had only EBRT - seems you should stick to the recommended guidelines. I exercised A LOT during all this. Biked, climbed, and had a trainer I lifted with 1x a week and lifted on my own 1x a week to keep muscle loss minimal. RBC was below normal due to ADT so I did get tired, had hot flashes, and did gain about 8 lbs. But I'd say it was worth the hassle and I bounced back well.
Thanks for your feedback - I found your substack link extremely useful. Your emphasis on the effectiveness of modern RT is what I've been considering all along. That small possible breakout into the base of just one SV would surely have been effectively nullified by my SBRT?
Well that is the intention of the SBRT so I would say "probably" 😉. My limited experience has taught me this treatment is all about balancing risks and benefits when there are a lot of unknowns. I've chosen to be aggressive (intraductal is an aggressive cancer) and so far it is working out but that can quickly change.
You were on ADT a long time before RT. Was this because of machine availability?
Thanks for that link! I previously happened upon his writing, and I'm very impressed. In my very limited experience of course, most Docs, especially those of older generations, are unwilling to discuss straying from a SOC based on old data.
Well like you this is perhaps the second or third time I had read this and his other writings. I am not a medical doctor or a medical researcher but I used his approach in guiding my decision making decisions about modern radiation and ADT usage. My MO and RO actively supported this and offered alternatives that might improve outcomes. My urologist was almost useless other then ordering tests.
I elected to do 6 months of ADT and whole pelvic radiation while treating my prostrate for cancer. Regarding ADT I had what I would consider an easy go of it with side effects over my 6 months of ADT.
That said I could not imagine what my long term QOL would be like on multiple forms of ADT. There was such a vast difference between my mental functioning on ADT and now off of ADT that I would have to really question lone term usage of ADT in the future.
At my age, almost 80 I have tentatively decided that at best I would do intermittent ADT for short periods to control PSA and radiation “wack a mole” if there was biological recurrence needing it. Of course the key to this approach is active surveillance using PSA and scans.
Tough call between Quality and Quantity of life. Others may make different choices.
I look back on how much I have matured in my cancer thinking and wish those just entering this journey my best wishes.
Well, you have a number of opinions. Having been on Lupron over 6 years with no end in sight, I'd recommend you err on the side of saving your life. You've gone a year on Lupron? Start exercising, even if moderately, and go another year if you have to.
Thanks for the feedback. I've exercised all my life and of course continued after starting the ADT, so there hasn't been much muscle loss. But perhaps you're right - just grit my teeth and go another 6 months.
There are also treatments for side effects and not just drug treatments. On another forum someone reliable highly recommended the Embr watch. Some people also use low dose estradiol patches which also benefits BMD but that has its own risks.
Some of the issues (arthritis?) you are experiencing could also be coincidence and not directly attributed to ADT but bring it up with your doctors.
Thanks everyone for your feedback - you've all given me food for thought.
I have another question though. Since the level of treatment depends so much on the TNM staging system, which itself relies so heavily on biopsy data, I wonder if I should have had a prostate biopsy, plus the SV tissue sample that the pathologist recommended, before starting treatment. After all, my biopsy data was 4 years old at the time.
Perhaps such tests (which my urologist told me were unnecessary) would have clarified the level of treatment required without having to resort to the full "broadside" that I underwent.
Given you were already T3b, the Gleason grade would probably not have changed treatment. There is however a (roach) formula that can be used to decide between PORT and WPRT and this is based on Gleason score. But WPRT is controversial and may not have even been considered.
I also think the Roach formula is a bit simplistic and outdated.
Point taken, and the increase in my PSA reading is unquestionable. But my elevation to T3b was from a small fuzzy spot on the PSMA PET scan that the pathologist was unsure about, since he recommended a biopsy to check his interpretation.
I agree with you on both issues. However the train has left the station so there is no sense looking back. If he needs pelvic radiation in the future it is still available.I chose the do it early approach using Roach formula and the possibility of microscopic cancer cells. Different strokes for different folks. No real “right” way.
I cannot provide the link(s) right now, but I believe some most recent studies fairly conclusively proved the benefit of WPRT for appropriate men. MY Memorial Sloan-trained RO said " of course" when I asked if he would include WPRT for my 4+ 5 non-metastatic case. He also included an IGRT boost to the the suspicious PIRADS 5 area. Hopefully, that treatment was overall nearly as effective as brachy boost...I would have had to ask for an outside referral for that while I was a Kaiser patient.
Both my RO and MO are relatively young. I have found them to be very forward looking and willing to offer various options and are not rigid in their thinking.
Both of them come to the appointments with various options and explain the pros and cons and in most cases they schedule a follow up to clarify any questions and we make a decision. This has worked really well for me.
I am not at some national cancer center just a regional hospital so the doctors are not prostrate cancer specialist. My MO also treats my wife’s blood cancer. So you can see they are truly generalist in their fields. More like going to your family doctor.
it’s hard to navigate individual circumstances and SOC - after failed HIFU for One side G7 <10% 4 and PSA 4.2 and AS with 2 biopsies over 18 months I ended up with G9 recurrence when PSA rose to 8 - PSMA/CT no spread and no SV visible.
I was recommended ADT zoladex and VMRT 20x3gy PORT. After lots of discussion because I was then 72 extensive muscle weakness from childhood polio and part time wheelchair used for 20 years on top of the fact I have used a ventilator for at night for 25 years - I also did my own tests ( not mentioned by the oncologist or anyone else) of a DEXA which showed I already had osteopenia- I also did a body composition DEXA as a base line for my ability to keep myself healthy and watch for ADT impact on my body composition and HB etc etc.
I made some errors like not getting on the bisphosphonate early enough but no help from medics especially as I CANT exercise or weight lift due to post polio syndrome and no arms muscles at all.
My first urologist just looked at me and said do nothing a you probably will die of your other conditions before the PCa kills you!!
I changed to see an oncoltand we began treatment - the relevant issue wast that BECAUSE of my multi issues 6 months was what she thought was safe and best FOR ME but acknowledged that 24 months was the SOC but small OS benefit though BRFS was less may 10% less
I decided to try for 18 months - I managed 17 from the end off RT - So risk I know but my PSA was <0.01 12 weeks after RT and stayed there until now 6 months post ADT - my Testosterone was always Fter starting AST <0.6.
I over shit was my oncologist thought safe for be but was supportive on my attempt
It’s all relative and individual but also being proactive about understanding the risk vs benefits which is where TA is spot on
I gave some concerns about the historical nature if the current trial of the past but they offer the best rule of thumb to apply to
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How long should PSA go down after SBRT
HoLEP for BPH followed by SBRT several months later for 4+3 = 7 PCa. Is it preferable to do the HoLEP before the SBRT? 
My turn for advice
Question for the Brain Trust, what am I missing!
MRI from 3-30-2024.
