Hello all warriors!
My husband is on 23 of 44 IG/IMRT treatments. Radiology Oncologist has suggested he stop all Elligard & Zytiga ehen he finishes his radiation treatments
His 2nd opinion radiologist determined that bone Mets at dx were likely” over called “
What’s your opinion? He hates how he feels on ADT and is willing to try to get his QOL back. He’s a pretty healthy and active guy. PSA stable .2
The Rad hasn’t affected him much? Dr says cure is possible 😊 really?
It depends on whether his bone metastases were true positives or false positives. Why does the 2nd opinion radiologist believe all his bone metastases were "overcalled."?
Hi TA
It was only shown at dx b4 any treatments, After multiple bone, CT, MRI’s and pet as well as latest PSMA pet, no bone Mets shown on scans, so we have to rely on what they are telling us, I guess
Unfortunately, that's not how it works. Bone metastases are supposed to shrink after treatments (in fact, that's how you can be sure they were indeed metastases). But if they were once there, you always have them even if they are currently too small to be seen. His cancer is systemic and there are no known cures, just long-term maintenance with systemic treatment.
Hi TA
Thank you for the quick response
Is it possible that initial dx was incorrect? The Radiologist that initially read the bones scans called them indeterminate ? There are questions
Is there any value to radiating the “supposed” bone metastasis?
That's what I was asking. Perhaps you should get a second opinion from an expert radiologist.
There is no value in radiating spots that are not metastases and it might be destructive.
Yes it is possible it is incorrect and I think it happens a lot because I think it is generally perceived as better to over diagnose than under diagnose. Or it could be metastasis. What they probably will do is call it metastasis whether it is or not and radiate it, because there is value in radiating it if it is. I was in the exact same situation and it really perturbed my RO when I asked him if he was going to radiate it, because he wasn't going to as part of the initial treatment, but after consulting others, he did.
that is kind of what we were thinking too! I don’t think other radiologist want to overrule the original Dx
Hi TA, this is a question for you in response to bone Mets
Can damage to hips and lower back from years of running show up as Mets? My husband was a runner for over 25 years of 22+miles per week and always had right hip pain and lower back pain
Is it possible that shows as “Mets” on his scans.?
We are back in AZ again this winter and same RO says he should stop Abi and Elligard , his psa has been <0.05 for 8 months(Jan 2024)
Latest Pylarify Pet clear no Mets
Thanks in advance
Not on a PSMA PET scan. Only on bone scan.
Had bone scan! No mets
What a difference a year makes! There has always been a question about whether he had bone mets. We found a 2nd opinion radiologist who reviewed the 2024 bone scan to the 3 taken in 2019 at dx. He doesn’t think he had bone Mets ever, it’s crazy to think his MO relied heavily on the opinion of 1 radiologist and started treating him as stage 4
We”ve got decision to make regarding continuing ADT and Abi
I’d love to hear what you think! The RO thinks rad cured him? It’s a long time since your reply !
ty
If you think he's cured, there is no harm in stopping treatment.
TA, That seems like kind of a flippant answer! He could always revisit adt if psa rises right?
It was not a flippant response. It was a logical response.
Reading your posts and replies from members of this group, it seems the cancer is mCRPC under control with docetaxel, and ADT plus abiraterone and then radiation to the prostate and pelvis.
If the cancer is mCRPC with bone metastases at initial diagnosis it is not a good idea to stop ADT and abiraterone after radiation.
It could be helpful to know what the original scans used to diagnose mPC really showed. Perhaps you still have the results available and could post them.
Hey Tango65,
RO reviewed 3 bone scans, from initial diagnosis , 2 MRI’s and PSMA pet from last year, only original bone scan from Jan 2019 at dx showed bone metastasis, nothing shown since, that’s what is so confusing to us, our MO is on indefinite leave🧐
Hey Tango65
I don’t have all 4 scans to share but we had a new radiologist take a look and compare to original bone scan at dx and most recent one in 2024 showing no bone Mets, we don’t think k he ever had them , old rib injury and years of being a runner, hips are showing arthritis etc, very curious
You could considered requesting a PSMA PET/CT which could identify metastases with a sensitivity much higher than bone scans or CT scans.
thank you, he’s been on ADT since Chemo ended in April 2019, RO says it’s ineffective after 2 years. Dx was T3b,N1, M1, RO is not convinced of M1, this radiation to prostate and pLN
The RO is no MO. Lupron can become ineffective after two years but it usually works longer. When the PSA value rises about 2.0 ng/ml while taking Lupron you will know it is not effective enough and further drugs need to be combined with it.
Thank you, we are getting another radiologist to look and review original bone scans, I think based on what you all have responded, if it “ain’t broke , don’t fix it”, we will continue to take meds and monitor psa, another test on April 7th
Good idea to get a second opinion. How many mets where detected in the scan?
He can certainly stop meds and wait and see what happens. This won't be done without some risk but my experience is there's risk in all of our decisions. The upside would be some time off and maybe some recovery to the body and if really lucky a cure or very long real remission. The downside is he will have a recurrence and have to restart everything. That could turn out for the worse or may not. Just be clear at what point (psa, scan, etc) you will restart and if the insurance company will allow that. In my case it was part of the plan (curative intent) and maybe I am worse off than if I had never stopped ADT. I had 15 months off and am starting back now.
if this is really for cure then there is good data that continuing antitestosterone therapy after radiation increases the odds.
Tough question. There are too many unknown factors presented. Certainly sometime is going on. It could be good; however, most likely bad. What does his Medical Oncologist say?
Back to your question, can you stop all ADT? I did in 2010 after a six month chemotherapy with ADT clinical trial in 2004. I have Mets to T3 and L2 with were completely resolved - replaced by new bone growth. I spent 6 1/2 years on either Lupron or Eligard when my research Professor MO convinced me to stop,
Professor had me start testosterone replacement in 2011 when T never came back. If I were to stop replacement therapy, my testosterone level drops to 23.
Admittedly I am an exception and have been most fortunate. At 76, life is good.
Incidentally, it was my research Professor Radiation Oncologist who sent me to my MO in 2004 when after primary treatment of Brachytherapy and IMRT and PSA rose to 30.2 within a year and scans revealed metastatic spinal lesions.
I think you can tell that I have lived in the world of Research and Academia seeking out those who are the “top of their game”. You will find these people at major medical schools. There are posts on this site that mentions their name. Depending on which part of the Country you live in; Tall Allen could be a resource.
I wish your husband good luck in killing the little bastards.
Gourd Dancer
I would think PSA <0.1 before talking "cure".
I agree, undetectable even better
But even that you would want your T at a normal level before concluding so. ADT has a lengthy tail causing Testosterone to be lowered for some time. Or can, for some individuals.
Staying on ADT after radiation is the standard today. When I had my 40 doses of radiation in 2010, one did not go on ADT until it was determined that the radiation did not cure you. In my case, that took 3 years and I have been on Lupron ever since (9 years).
Since he is on ADT plus, I personally would not have my RO, or any RO, tell me what is not their job. I initially went to get a second opinion after the clinic associated with the urologist/surgeon passed me on to radiology. My PCa had definitely escaped the margin of my prostate that was removed.
They promptly told me I should go on radiation and ADT. I felt like I was getting the used car salesman treatment and I then went to the best Washington state radiology center (at UW) and got a second opinion with a MO oncologist at the SCCA center now part of Fred Hutch. The radiologist did recommend radiation. The MO recommended ADT.
I believe that I made the right decision about getting second opinions. I trusted the new radiologists and the new MO much more. Whether I made the right decision not to pursue radiation nor ADT will never be known. I had concerns about the side effects of both. For radiation it would have required the entire pelvic floor and north to the bladder and intestines behind. I was worried about the side effect of ADT would have on my life long depression, which in fact, it had. A major impact.
Bottom line - get second opinions for both radiology and oncologist - separate docs and may be clinics.
Here is what I have found. If nothing else I will never go back to all ADT without TET supplementation; it appears that its not necessary to go to ZERO TET for either AS or treatment protocols. TNX
healthunlocked.com/active-s...
Also, if he has not thought of it he should start to look at his ED...dont wait too long. Here is my history. I did not think about ED at all and was purely focused on living, treating and killing this cancer. I regret not paying more attention. ADT will damage his erectile boby and function, so time is important...I know, its the last thing men think of until they realize they may live, then options are more limited and the damage is done...TNX
I would appreciate it if you could give me your help and advice!
Oncologist told my Stepdad there is nothing else he can do for him.
What should I expect at the end?
Brother's numbers since ADT plus Orchiectomey since diagnosed in February
Can psa fluctuate while on adt?
