I got my results from PSA/PET last week, showing no metastatic activity anywhere, bones and lymph nodes clear. My last Gleason score was 4+3 in 1 sample, 3+3 in 2 more same side, but focus of intraductal cancer in 2 cores on other side. Last PSA 5.3 in February, stable between 5.0 and 5.8 last 2 years. Does anyone know if intraductal cancer shows on PSMS/PET? The images showed "a small focus of radiotracer uptake" in the 4+3 area but nowhere else. My RO has suggested 6 month ADT and 40 treatments, but I would like to avoid the ADT and do 20 more intense treatments and have not ruled out Cyberknife elsewhere if I'm eligible with Unfavorable Intermediate. (But hey, I only know what I read.) I have an order in to do the Artera.ai test which seems to be now ok with Medicare and relevant for my unfavorable intermediate risk. I have not yet approved it, since I'm not sure if my RO will pay any attention to it until I talk to him this week. Doesn't seem be eager to try anything not tried and true, including newer ADT drugs. My plan, if he agrees to consider it, is to use the findings of that test to help me make the 6 month Eligard decision. Thoughts?
6 Month Eligard: I got my results from... - Prostate Cancer N...
6 Month Eligard
PSMA PET (other than Posluma) is not very good at showing cancer in the prostate because false positives may result.
But your question is really about whether you can avoid a short course of ADT. The standard of care is 4-6 months with EBRT, and there is good evidence it improves outcomes.
jamanetwork.com/journals/ja...
ascopubs.org/doi/10.1200/JC...
Artera.AI will not show the likelihood of a cure.
Why are you afraid of it?
Also, I didn't mention that the PSMA/Pet was with Pylarify. Maybe better images?
No, only with Posluma.
Don't know where my original lengthy reply went? I cant see it. Just concerned about long term effects of short term ADT, when I feel great right now.
I hear that a lot. IMO, it represents a failure of imagination. We know from bitter experience, it gets bad.
Found it!
Thanks for you response.
Because I am finding it difficult to make myself do something that will almost certainly make me feel worse than I do now. Because I know symptoms are not often present, but if not for the cancer (that I know can kill me sooner) I have no pain, no incapacities, and have spent almost no time at doctors in my life. Because I've been lucky, I guess, but I can't seem to stop thinking about trading good time now for 3 or 5 years from now, even though I know that's only a minute away for 70+ year olds. I've mentally adjusted for the radiation effects. Because there can be permanent problems caused by ADT that concern me. Not so much the sexual, but heart, strength, obesity and mental issues. Can I expect that to be a serious consideration in a 6 month Eligard or not? Because I feel confident that I could handle the 6 months, but will I have only 3 to 5 years cancer remission anyway and will those years then be complicated by new issues caused directly by the ADT, or even more ADT? Because I know bad experiences make it to the internet more than good in all types of forums, but I'm looking for things to tip the scale, one way or another. Because I know you can get used to anything, but aging has enough to get used to without adding more. Lastly, because no one can truly predict any of this and I'll be just guessing...
"...heart, strength, obesity and mental issues" The side effects you mention increase with long-term use, not 4-6 months. Heart issues rarely occur if one does not have pre-existing heart issues. If you exercise and adjust your diet to fewer calories for 6 months, obesity will not be a problem. You can count on loss of libido and hot flashes for 6 months.
"...but will I have only 3 to 5 years cancer remission anyway" Not if you are cured by the treatment. Avoiding ADT is a self-fulfilling prophecy: it will increase the probability that you will not be cured, and you will have to be on ADT permanently instead of just 6 months.
"Lastly, because no one can truly predict any of this and I'll be just guessing..." The best guess is what happened to the men in those trials. You may be an outlier, but would you stake your life on that (literally).
Thanks for your detailed reply. I see that I have not paid enough attention to the short vs long term effects. I will probably have the Artera test done since it is ordered and ready to be processed, My insurance should cover it and if it's not, it was surprisingly inexpensive. I don't see value as predictive of actual cure, but possibly as a guide to effectiveness of ADT from a personal sample.
Consider yourself lucky.....JUST 6 months, not the 18-24 months others must endure. A recent study involving 10,000 treated itermediate and high risk men found a steady increase in benefit ad ADT duration increased to 10-12 months.....the benefit continued to increase past that point, but at a very reduced increase in benefit for metastasis-free survival and reduced PCa-caused mortality......but overall survival peaked at 19 months duration.
You certainly could be one of those who does svery well with no ADT....the studies show you are likely to do better with ADT.
I assure you there are herds of men who have similar thinking about the fallout from ADT, and serious research Docs understand this and continue to try and improve the ability to determine which men willprobably do well with less or no ADT. But again..the cup is more than half full for you...just 6 months, and evidently stiill decent benefit at even 4 months.
How much do you exercise and what kind? This is a far more important a consideration than enduring 6 months of Eligard.
I walk almost daily, pedal a stationary bike , and am not overweight , no heart problems thus far. Spring takes me to 9 acres of brush trimming, grass mowing, rock moving and general maintenance, always several hours a day. I have never had a weight problem and my wife is pretty conscious of what we eat. I'm thinking I can do more, but I'm not likely to be a gym guy.
On ADT it’s highly advisable to add deliberate resistance training to whatever you do. It has nothing to do with being a ‘gym guy’. It has everything to do with the muscle loss you will experience from T suppression. And since you’re older, it’s very difficult to rebuild later.
Calisthenics, bands, weights at home etc all work every bit as good as any gym.
Also, since 6 months ADT is much more easily tolerated than longer courses or lifelong, you should be as strong and as fit as possible from this point forward. This way, should you ever have to resume ADT later, you’ll be in a far better position to handle it. Great luck to you!
Please continue to keep in mind that we are not giving medical advice here - we are speaking from our experience - and some of us have a lot of experience. My impression is that you are putting a lot of energy into entirely the wrong issues. You have a relatively small amount of unfavorable cancer, which as far as can be determined at the moment, is contained in the gland. Your focus should be on the effective treatment you can get now with the best chance of irradiating the cancer. I would check whether I could get ablative RT to the gland through SBRT or Brachy (HDRT) which might irradiate the cancer without ADT. If not, a brief course of ADT, 4-6 months, is something you will easily recover from if you irradiate the cancer . I have been on and off ADT for 6.5 years and counting. No fun, but it works! I don't know where you have gotten the idea that a few months of ADT will cause problems down the line. I have never, ever known anyone for whom that was true. Untreated cancer or treated too late? I'm living proof that you don't want that. Focus on doing what you can, whatever that is, to get cancer free. If that works, you're golden. If it doesn't, worry about that when and if the time comes. Primary treatment first. Get the absolute best you can find!
Thanks to you guys, I am feeling more confident in handling the ADT. I'll do the Artera, just for its + or - result, and see what shots the RO wants to do, 3 or 6 months , and when radiation treatment would start.
To work as a "team" with your medical team requires everyone be heard. Not sure, but kind of sounds like your RO not open minded. It’s your body - you’re driving the boat. Your body is subject to the treatment. Good luck. Demand Artera - what benefit is expected for you with ADT?
I have found that working with an Oncologist in one system and a Urologist in another is not conducive to having a team. Test results, reports and records are in different systems and simply do not go where they need to be without constant input from me. Also, my family doctor is a big believer in Testosterone as an essential part of male health, so only grudgingly on board the ADT train. This far along, I do not want to start over somewhere else, though I might still check out the Cyberknife route as that is where I started 5 years ago when i went an Active Surveillance.
Sherpa,
I was also unfavorable intermediate risk with G 3+4 and PSA 12 but my prostate was 100 cc so the PSA density made the high PSA a little less concerning. To some doctors I may have been in the favorable intermediate risk category but my RO wanted 6 mos of Eligard to be conservative. It has been 1 year since the Lupron left my body. I have no heart problems and no sign of diabetes. I had the usual hot flashes and fatigue and a lot of muscle atrophy even though I was hiking, biking and lifting weights. I had no erections/ejaculations but I did not care since the libido was gone anyway. My only regret is that I should have done my weight training especially on my lower back and leg muscles. Muscle atrophy in my back and legs brought on sciatica and leg soreness about 5 months after I stopped the Lupron. Through physical therapy and stretching exercising I am much better now and am hoping for a full recovery. I am 78 years old now and while my testosterone was less than 10 at the nadir while on Lupron, it is over 500 now. and my sex life is now back pretty much to as before. My PSA was less than 0.02 at its nadir while on Lupron and it is now 0.07. I, of course, am hoping to keep my PSA below around 2 and hope to maintain my T at a high enough level for a few more years until “old age” really sets in. At this point I am optimistic that I will stay in remission but know that it can go the other way. I am glad that I took the 6 months of Lupron despite my leg problems. If I stay in remission I will think of my 6 months of Lupron as a “preview of coming attractions” for when I “really” get old and lose my testosterone naturally. In the meantime , to prepare for that time I am trying to build up as much muscle as I can while I still have testosterone. I recommend lots of weight training for anyone anticipating undergoing ADT or for that matter anticipating old age.
Thanks,
I have, to my knowledge, never had a testosterone test. I'll ask one of my doctors about that before doing any ADT. I've had some back issues in the past, including a fractured vertebrae I didn't know about, found in last years CAT scan. but have been doing stretching exercises for many years and am pretty active outdoors. As I mentioned, I know old age will bring me new issues if I'm here to "enjoy" it, just don't want to exacerbate things.
I think what Tall Allen said about increasing the odds of a cure no matter how slight that increase may be with 6 mos of ADT is the way to go. If my cancer comes back and I have to go back on ADT for years, I do not look forward to that but 6 mos was not too bad. There are many in my PCa support group who have been on ADT for many many years. Some do better than others. One 84 year old guy hikes 4 miles each day in the foothills around Albuquerque carrying a pack with 20 pounds of barbells inside. He is my hero. He has been on Lupron for more than a decade.
Hi Sherpa,
I did a six-month dose of ADT in a salvage setting and had minimal issues with it.
By way of background, I had a radical prostatectomy that failed and my PSA returned. (Gleason 3+4, negative margins, no SVI, ECE, LNI.) When my PSA hit the traditional definition of biochemical recurrence of 0.2 ng/mL we started looking at salvage therapies.
I really wanted to know where the cancer was before starting salvage radiation therapy (SRT), so I went for a PSMA PET scan when my PSA was at 0.22. It didn't show anything at all at that PSA level.
In the subsequent months, my PSA accelerated in its increases getting to 0.36. At that point, my team and I agreed on a 6-month course of ADT starting about 8 weeks before the SRT began.
The Eligard caused mild to moderate fatigue (felt as though I was firing on 6 or 7 out of 8 cylinders); loss of libido; thinning body hair; and more hair-triggered emotions. Luckily, I didn't have a single hot flash and my weight remained stable.
All of those side effects went away a few months after the Eligard wore off.
The Eligard dropped my PSA to 0.05 but, unfortunately, it and the SRT have failed to rein in the cancer. My PSA is now 0.37 at the end of January 2024—slightly higher than it was before the SRT—and we're trying to figure out what's next.
Also, I did have a second PSMA PET scan at my 0.37 PSA level and it, too, showed no signs of cancer or metastases.
Like you, I was concerned about the ADT side effect horror stories, but my experience was better than most. Your mileage may vary.
Best of luck in whatever you decide.
Your PSMA/PET results concern me. I thought that test was fairly accurate at finding cancer in other places. As I haven't started anything at all yet and your situation is somewhat different, I'm back to "cancer works differently" in individual cases, so just glad for all the input.
You may want to look at Figure 2 in this study to see how Ga-68 PSMA PET scans perform at various PSA levels:
pubmed.ncbi.nlm.nih.gov/309...
Thanks, and I see these are related to recurrent disease? However, the increased accuracy with high PSA (for recurrent) seems to bode well for accuracy with first-diagnosis PSA's in those higher ranges , if that relationship holds. We'll hope for the best!
Curious to know the time span from date of prostatectomy to determination of recurrence? Thank you.
It varies for everyone but mine was just short of three years from my RP.
My history:
January 2011 - Radical prostatectomy
September 2015 - First detectable PSA at 0.05 ng/mL (my lab defined anything less than 0.03 ng/mL as undetectable)
July 2021 - PSA reaches 0.2 ng/mL (traditional definition of biochemical recurrence)
There was no intervening treatment initiated between September 2015 and July 2021. Salvage radiation therapy was started July 2022.
Good luck!
Consider Orgovyx rather than Lupron. Much faster drop and recovery of Testosterone. I agree with advice to get your current T level before ADT so you have a benchmark to see how much your T recovers post treatment. Orgovyx is easier on heart and bones as well. Big challenge is cost. Myovant has programs to help people if your income is <400% of Fed poverty level, around $70K +/- for a couple filing jointly.
My doc seems stuck on the Eligard, not convinced newer is better. Didn't really seem interested in other options. I don't see a consensus of overall "betterness" from what I'm reading. He has a good rep and is easy to talk to, so we'll go from there as I'm not eager to start over elsewhere after I've experienced the "communication" between health providers.
Eligard/Lupron has been the standard for a long time and works well. I personally have fewer side effects with Orgovyx, but managing monthly prescriptions and costs is a lot more work than an injection every 3 months. Do what works best for you, of course.
I hope all can read this. I met with my RO today. In response to my Aptera.ai question, he asked if I felt safe in going by that result when current evidence shows overwhelming that radiation +short ADT work. He also offered a shorter 28 treatment course, simultaneous with a 3 month Eligard shot, with option for a second if I handled it well. They have a new machine recently that supposedly helps with precision. All that considered, I said lets go, so all starts second week in April, not doing the Aptera.ai. I think it is probably reliable, but got thinking my cancer is here now and it might be a better option after a few more years. I feel confident I made a good decision, if not the right one.
Thanks to every for all the great input.
I assume that is 28 sessions of external beam, without either a Brachy or SBRT boost? And yes, the new equipment is more precise and can deliver the same total radiation dose in fewer session with greater safety. Where are you getting your treatment? Just curious.
Yes, first (I hope only!) go round with prostate confined 4+3 in 1 core, maybe some intraductal, but nothing visible on scan. Treatment is in Yuma, Az. RO is Navy, USC experienced and has excellent reputation and though I had options in Phoenix, elected to stay close to home. (1 mile to cancer center). Not eager for the ADT, but he strongly urged it with unfavorable 7, and offered the 3 month shot just in case. I just hope it works and I never need that other stuff.
Glad you decided to do the ADT. I had exactly the same issue. I had 25 sessions of ADT and 6 months of Lupron. I started my gym routine 4 months prior. You need the resistance work. I also had a month of Casodex to eliminate the T surge with Lupron. I also did a drug called Tamoxifen to eliminate breast enlargement.
I did a Dexa scan and had a baseline T test. T was almost 700.
I also had my pelvic area done as a precaution to stop micro cancer.
Results. Almost no real side effects from ADT. I attribute that to resistance work, diet and luck. Minor fatigue but a short combat nap and I was good to go. I went to the gym everyday after radiation or before. Lost 12 pounds and have kept it off.
Treatment Results. TWO months after 6 months I had a T of almost 250 and now back to 700. I could actually feel the T climbing in my body. It was that noticeable.
Overall RESULTS. I am almost 9 months post radiation and ADT and my PSA is <.01. RO and MO are very pleased. This PSA may be a harbinger of a good prognosis to come. Fingers cross.
Tell your RO “GO Navy and Fly Navy”. How was the winter Blue Angel traning program this year. Did you catch any of it?
I hope I have a similar experience with the Eligard. It concerns me more than the radiation itself. RO I believe is also planning the nearby pelvic region radiation. SpaceOAR going inApril 11 and radiation the next week. I hope to watch weight carefully, never been overweight in my life, and RO says no breasts in short term very likely. I'll keep up morning stretch/aerobics and evening walking. My family doc has ordered a T test , just as baseline as RO says it really doesn't matter as its going away anyway and at 74 we just hope it comes back. Family doc is big on T, sells it as major health benefit. Talked to him today, so makes me feel better about that phase of after treatment. Just hope PCa is cured and not just pushed down the road, like many here.
El Centro is Blue Angels winter home. Sometimes see them around Yuma, but not often as our big spring air show isn't quite big enough. RO got me onto Vietnam VA benefits for prostate cancer, I didn't know I was eligible. I was an AC119 gunner in the AF. Thanks for your comments.
Yep forgot El Centro. Have you had your initial VA meeting for the cancer? Even though you sent in your records bring a copy of Biopsy, MRI. This makes it easy on the doctor.
Mine took them so he could use them in the report. Go online and get a copy of the report he/she is going to send into the VA so you know the questions before hand they are going to ask.
You bring back memories. I have some amazing slides of your work one night. Amazing amount of lead you guys could lay down. That was a scary aircraft. It was so underpowered with a full load.
Funny new guy in country story. I went through in processing. and they gave me my flak vest and helmet and told me about shrines for attack.
Well that afternoon we were under a rocket attack so I grabbed my stuff to head towards the bunker as they told me to do.
This old crusty Major grabbed me and asked where I was going. I told him the bunker. He just looked at me, shook his head and said there are snakes in the bunker. I am sure he got a lot of laughs telling that story at the squadron. For a while I was Lieutenant Snake on the flying schedule.
Not doing VA health care, just that helpful benefit. Was approved last year online in 3 weeks, never had a meeting. I do not want to spend any more of my remaining time on earth sitting in any more offices and insurance has been good so far. Luckily for me, war was over for 50 years, and I rarely thought of it until this new flight.
Thanks, I just feel better the decision is made.
My prostate journey and testosterone side effects
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