Latest update: I got the results from my PSMA Pet Scan yesterday, and it was ALL CLEAR!
No evidence of metastatic disease.
Very relieved to see this finding but also realize we are nowhere near done, but now we have the data to take action. I'm trying to study and decide RP vs. Radiation. I have a number of appointments in the next two weeks with both RO's and Urologists to discuss treatment options. I'm 66, very physically active, and realize now is the best time to try and beat this sucker.
Questions I have:
With a PSMA pet scan as being clear, do I need ADT therapy? I believe the standard of care is 2 years with radiation with high risk PCa. PSMA Pet scans are new, and not sure if there is clinical evidence, but with a clear scan, perhaps ADT therapy should be reviewed. Does anyone have any experience with this?
My initial research seems to favor Radiation for high-risk (G9) Pca but again, if PSMA is clear if the glance is removed, would that be the end of it? or would it be safe to have 3-6 months of ADT to be sure
Finally, my treatment is not decided on yet nor scheduled. It could be 2-3 months before treatment begins. How do and ensure cancer does not spread in the meantime? As of September 28th, I'm all clear outside of the gland. How can I maintain that integrity until I get treated? This shows my total ignorance on cancer progression.etc. I've modified my diet.e.tc What other things can I do to slow it down. Should I go on ADT prior to treatment.
Any guidance would be greatly appreciated. This has been a rollercoaster emotionally to say the least but I really am grateful to have all of your help and experience.
Sincerely,
Mark
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Initially, after diagnosis, I favored RT for the same reasons that you do yourself. Switched to RP when realized that there is no cure for PCa, only stalling it until one dies from something else. Hence, the more stalling options, the better. I got 2.5 years before consequent treatment which, in my view, was a decent risk to reward ratio. Currently, maneuvering Bicalutamide against cancerous cells have already got almost a year of stalling, hoping that I will milk it as long as possible. I know that salvage RT will be the next step. I was diagnosed at 69 and 2-3 years per treatment option will hopefully get me to my 80s. But, if you read my posts you will understand that I am not the type of patient abiding to: "Find a good doc and do as he/she says".
In 2020 I was asking the same questions that you are asking. I was high risk G7 with 11 of 12 cores positive - N0M0. Very similar to yours. I chose radiation + 24 mo adt for two reasons.
1) I did not like the SEs of RP. When my doctor told me 28% chance of permanent incontinence and 100% probability of ED I was ready to run out the door. Your URO will likely present RP as a walk in the park and an obvious best choice of treatment.
2) I chose RT + 24 mo adt. When I learned that the chance of cure and OS (Overall Survival) rate was nearly the same as RP I chose RT because of the reduced SEs (Side Effects). I am very happy with the response that I got from RT. My psa went from 33 to <.1. I have no regrets. I would choose that treatment again.
One thing that you need to consider is the presence of micro-mets. Micro-mets are cancer cells that are circulating in your system that cannot be detected with any tests or scans. RT destroys the tumor in your prostate. ADT starves any mirco-mets in your system.
The problem with RP less adjuvant therapy is that micro-mets are free to grow until they have advanced to where they can be detected. IMHO RT + ADT is a much more comprehensive approach to treating high risk PCA than RP alone.
Wishing you total healing and many years of health!
Exactly. The ADT can be started now, so hopefully any circulating PCa cells are starved. ADT also shrinks the tumors making them easier to target, and the weakened tumors are more easily destroyed by the radiation.
I can’t advise what you should do, I can only relate my own experience, thought processes etc.
I was diagnosed with a PSA of 87, Gleason score of 3 + 4 with tertiary grade 5. Also I had seminal vesicles involvement that is localised spread of cancer.
Given that I was considered very high risk (for recurrence) and that surgery in my case couldn’t be curative, I chose external beam radiation plus 3 years of ADT.
Since radiation (ADT commenced some months prior) my PSA reached undetectable and has remained there ever since. I had my last ADT shot in February this year.
What I can suggest to you is to learn as much as you can about all of the options available to you before you make an informed decision. I found it very helpful to write down the Pros and Cons (as I perceived them to be) of each option so that I could clearly see what I was signing up for. Unsurprisingly I found the urologist favoured surgery (even though I would have required further treatment) and the radiation oncologist preferred his own field.
Given that I wasn’t stage 4 meaning that I had a shot at a durable remission, possibly even a cure, I decided to go for it, i.e. accept the undoubted unpleasantness of as much treatment to try and achieve the best possible outcome.
I didn’t like the prospect of the side effects of
Surgery
Radiation
ADT
But I wanted to get my chance at the best shot now knowing I probably had only one chance of a cure or at least a durable remission.
I’m not aware of radiation without ADT for high risk prostate cancer as the micro metastasis which can’t be seen even on the latest available imaging is what causes recurrence of cancer if left untreated or if under treated.
I was fortunate to receive radiation to the prostate and the pelvic lymph nodes which was controversial then but standard of care now (to irradiate any clumps of cancer cells too small to be seen in the lymph nodes, which is often their first port of call in spreading outside the pelvic area).
I wish you well on your journey with this disease. There are many on here who can help with questions etc.
Unfortunately there are no easy options with high risk prostate cancer, no shortcuts, no soft landings. There is hope however, my own experience shows that, my radiation oncologist was surprised that I still have an undetectable PSA. He admitted that he was expecting to have to lay out my next treatment options when we spoke in August. It’s cancer, I was very high risk, it may come back but for now I’m alive and living.
Prior to my RP at the end of April all my scans were clear (including a PSMA scan two weeks before surgery). PSA was 72, Gleason 4+3.
After surgery margins were clear and lymph nodes were clear. Everything looked good.
But after surgery I had persistent PSA and a subsequent PSMA scan identified two pelvic lymph nodes and one hilar (chest) node. Biopsy of the hilar node was clear. Have now started hormone therapy with chemo and radio to follow.
In my case even though my pre surgery scans were clear I still had cancer in my lymph nodes. Presumably this was already there but just too small to show on the scans. I also had a false positive in the hilar node. So the PSMA scans are good but not infallible and my experience would suggest not to alter the ADT protocols on the basis of a single clear PSMA scan.
my situation similar to OP. 66 yo, very active. PSA 6.5, Gleason 4+5, limited to prostate. Given side effects of RP and folks often end up with radiation and ADT anyway, I went with 18 mins of ADT, beam radiation, and brachy. By far best outcomes for my aggressive type of cancer. One more Lupron to go - feeling good. Off to east coast climbing trip.
hi. My situation was similar. Gleason 9 but a small amount, no indication it was outside by the scans and psa under 10. It was a difficult decision. After ALOT of consultation (7 docs) I chose a trial at NIH in DC where they give you 6 months of intensive ADT to get rid of any escaped micromets that didn’t show up on scans followed by a nerve sparing robotic prostatectomy to get rid of the motherload. Very happy with the results. The biopsy on the removed prostate showed all the cancer was gone! 2 and a half years later psa still undetectable! T fully recovered. No issue with incontenance. Some ED but manageable. Life is back to normal. If your on the west coast, U San Diego has a similar trial. Happy to provide more detail if you are interested.
By the way, I also had a delayed start to treatment and was worried. NIH Doc prescribed bicalutimide (a mild adt drug with little side effects) to keep things under control for 2 months until start of treatment. You could ask for this. It doesn’t interfere w treatment and is relatively easy on the system .
yes. Started the intensive adt 6 months before surgery. Intensive adt was adt (goserelin) plus enzelutimide (xtandi) plus abiraterone (zytiga) plus prednisone. My trial didn’t continue intensive adt after surgery but I believe there are some trials now that do that too. although the longer you do adt it reduces the chance that T will fully recover and intensive adt is no walk in the park and I was glad it was only 6 months. One nice thing about the NIH trial was that they also did pet and mri scans half way through the six months to see how it was working. If there was little impact, I might have dropped out and gone for radiation. As it happens, there was a large impact (prostate seemed to be free of cancer after 3 months) so I continued.
Please don’t think this is just plain adt. They did trials of 6 months of just adt before surgery and it wasn’t enough to make a difference. This new approach takes the stronger second generation testosterone blockers that are usually reserved for a later stage and uses them upfront to really knock down the cancer.
Do I understand that right? You had plain ADT+Enzalutamide+Abiraterone plus Prednisone in the same time? All of them together?
Can Xtandi+Zytiga plus Prednisone in the same time give a better results then Xtandi alone (with the simple ADT)? And how much difference it makes when you have Xtandi and Zytiga together in the same time?
yes. My trial had all at the same time. The NIH reasoning is that they do different things. ADT stops the main source of Testosterone, but some small amount of Testosterone is still made locally by the glands and the prostate itself that the cancer can feed on. Zytiga stops this small amount of locally produced T. Xtandi works differently. It pretends to be T and locks up the T receptors in the cancer cells so they can’t feed on any T that is still there. A bit like stuffing someone’s mouth with a rag. The idea is that the triplet combo has a better chance of starving the cancer cells than any one alone.
Now, what do the early results of the various trials say? It is too soon to say. It may be that only zytiga or xtandi alone when combined with ADT could be enough. Or not. Various combos are being tested, including adding 6 months after surgery, to see what works best. Another second gen drug, Daralutimide, is also being tested in some trials.
I believe I took the enzalutimide and prednisone in the morning and abiraterone in the late evening. If I recall right it is because abiraterone needs to be taken on an empty stomach at a time that is several hours before and after food.
I chose radiation in a similar situation because70% of people who chose RP end up on radiation. You have plenty of time to learn about your situation and your choices. Check my profile for details, would be happy to talk with you about my choices.
didn't see this earlier. started lupron three months before protons and then had the low dose brachy a month after the protons ended. lupron for a total of 18 months ending this December.
What is the minimum requirements starting lupron before proton therapy? (You started lupron 3 months earlier. Was that 3 months a minimum requirement starting lupron before proton therapy?)
I belive longer is maybe better in order to shrink more the prostate and the tumor therefore resulting in less radiation exposure of the normal tissue as the target is smaller?
esperandrich wrote -- " ... Also, everybody is different so the right *answer* is the one you decide on based on the info you review including what your docs say. "
In 2015 I was an avid bicyclist when this pothole in my life's road trip appeared at almost 65yo. MY answer for a PSA of 14 and 5+5 right half of prostate with 3+3 in left was immediate castration instead of ADT then the hemi-cryoablation of right half instead of radiation, chemo, surgery, brachy ... and then had IRE in left half .... BUT I also had an unapproved Immunotherapy Injection in-situ some 7 months after the right side cryo. One month after the in-situ and 8 months after the cryo I began biweekly Testosterone injections.
I've dealt with some speed bumps since diagnosis with simply waiting to see what pops up in the future.
I was in almost the same exact situation, and it's a difficult decision. Someone could make a fortune if they could write an app to make the RP vs. RT decision for people based on their preferences, backgrounds, expectations, etc. I was worried about incontinence from RP, and since ADT and radiation often get paired with RP, I figured I would just go that route anyway rather than RP. Plus removing your prostate doesn't guarantee a cancer-free future either. The side effects from ADT and radiation aren't particularly pleasant, but it is what it is. I started ADT as soon as the CT and bone scans came back negative, then 2 months later started 25 Cyberknife radiation treatments, followed by brachytherapy shortly thereafter. After 13 months of ADT I stopped getting the shots, and so far my PSA has remained under .1 after 8 months of no ADT. Also so far no incontinence from the radiation, but my prostate is non-functional.
Sorry you are in this position that most of us have already dealt with, but good luck with your decision! 😕
Everyone says its slow moving and your more likely to die with PCa versus from it. But I had zero patience so I pushed very hard during the pandemic to have a RP even at personal costs cuz I had no insurance and was 6 months from USA Medicare (Gov't Health Care).
I went thru the whole process of MRI's, full body scan etc etc at Johns Hopkins here, one of the most respected institutions. My MRI diagnosed me with 5+5 by a world renown expert. So they ripped it out and found it didn't metastasized anywhere. But just like a PSMA Pet Scan this means nothing. There tests are not detailed or accurate enough.
Having said that I just went 26 months PCa free but will watch very closely for another 10 months. My great Doc said after my RP, congrats and said I had a 50/50 chance of being cancer free going forward. My after affects have been minor and I am very active, healthy, and quick to recover with minor after effects. If you go the RP route get someone who has done thousands!
So I stand at the ready for after treatment (radiation) but hopefully I am one of the ones who wont need follow on treatment.
So would have I have been better off taking all those drugs and having an 86% chance of bine cancer free after that ordeal, I don't know. Hindsight vision is always 20/20. I am just thankful there are many options now for us and that in any case our chance of surviving are excellent!
This past week I met with two ROs and another Urologist to discuss my DX and treatment plans. I decided to go with SBRT + ADT. I believe this is the right course of action. I've started an 18-month ADT treatment and will start the planning activities for the SBRT treatment, which hopefully be complete by the end of the year. Unfortunately, I need to get a colonoscopy this year, and I either need to get it done ASAP or wait 18 months after the SBRT treatments. I definitely don't want to delay SBRT, but I need this colon screening as well. Hopefully, we can resolve this ASAP.
I realize I'm only starting this journey, but I believe that I'm pointed in the right direction. Thanks to all of you for helping me.
p.s. One other note - My PSA was taken right before the ADT shot and it was 6.7 which is pretty much identical to my PSA in April of 2022, so I'm assuming that there was minimal change over the last 6 months. It will not cause any "pause" in my actions but just a data point.
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