Looking for one case or one study - Advanced Prostate...

Advanced Prostate Cancer

20,967 members26,122 posts

Looking for one case or one study

Ahk1 profile image
Ahk1
32 Replies

I am looking for one case or one study to suggest doing targeted radiation therapy WITHOUT ADT to treat a met that has been found using a sensitive pet scan like 18F or PSMA in a recurrence ( psa .5) after RP&SRT which has ANY positive outcome like ( delayed the start of ADT, cured, better survival benefits, etc..).

I am scheduled to do a 18F pet scan at NIH next week and I am questioning the benefits of it in the setting mentioned above.

I have to make a lot of travel arrangements for it and I am not sure how helpful in the long run it would be.

Most patients do the scan, find a met or two, start ADT and treat it with targeted therapy then the psa goes down and they think it’s the radiation that did it but in my uneducated feelings , it’s the ADT that did it and then later the psa starts to rise again.

This is the reason why I am looking for any data to support this

Thanks all for your help

Written by
Ahk1 profile image
Ahk1
To view profiles and participate in discussions please or .
Read more about...
32 Replies
GP24 profile image
GP24

I had CyberKnife radiation to my lymph node mets. The RO recommended no ADT, I guess he wanted to see how his radiation worked. After a year the PSMA PET/CT showed new mets which I got radiated again. This time I do adjuvant ADT with Casodex to gain a longer time without new mets.

This is a study you are looking for:

ascopubs.org/doi/full/10.12...

There were a few patients in the control group who add a strong PSA decline without any treatment. This "spoiled" the trial results and so the trial showed just a small benefit for radiating the mets. The follow-up trial to this one adds six months of ADT to the radiation or LND.

All you can hope for is that removal of the mets plus ADT works better than ADT alone. E.g. see this trial:

astro.org/News-and-Publicat...

Ahk1 profile image
Ahk1 in reply to GP24

Thanks very much Gp24,

I am not a doctor but my feelings from all my readings of other patients experiences is that the ADT who did the trick and not the radiation. The radiation might have killed a few cells here or there but the ADT who actually made the big benefit. I am not advocating for ADT, I had refused it until this minute even when I did my SRT. I guess it’s time for me to start it at end of this month and Nevermind chasing the cancer with this F18 pet scan at this time in my treatment path.

GP24 profile image
GP24 in reply to Ahk1

My personal opinion is that it makes sense to treat metastases. I think these harbor the biggest part of the remaining tumor cells and even may harbor already resistant cells. So if you treat these, you address a large portion of your tumor cells and even remove part of your resistant cells. I rather have ADT take care of the remaining tumor cells then, instead of leaving the complete job to ADT. This is how I see it.

Ahk1 profile image
Ahk1 in reply to GP24

To some degree, I agree with you but I am very afraid of more toxicity because of the additional radiation that is why I am trying to convince myself to stay away from it. Very hard decision

Schwah profile image
Schwah in reply to Ahk1

I did it to my three Mets along with adt and Zytega. The radiation was a breeze with zero side affect. My Mo, the radiologist I used and another Radiolgist at ucla app believe in the abscopal affect. Please don’t exactly understand it but I think the theory is the radiation spurs your immune system to eat up the dead radiated PC cells which in turn go after other micromets. If someone else here can explain it better please do.

Schwah

in reply to Schwah

Thanks

I have had my 4 bone mets radiated. On Cassodex only. On you constantly on Lupron and zytiga?

Schwah profile image
Schwah in reply to

I have been for about 16 months now. Down to .01 PSA. Planning on a “vacation” at month 18 or 21

Break60 profile image
Break60 in reply to Ahk1

Imho there’s a hell of a lot more toxicity from ADT than SBRT!! I’ve had tons of RT (see my profile) probably more than most everyone :

2014: IMRT 68.2 grays to prostate bed

2015: IMRT 75 grays to all pelvic lymph nodes

2017: SBRT 30 grays to right femur

2018: SBRT 60 grays ( 30 grays each) to right scapula and left third rib

No recurrence in any of these areas but I’ve also used ADT along with RT and ADT caused SEs not RT.

Bob

in reply to Break60

Hi Bob:

Did the mets go away?

Are you on ADT?

Thanks

Break60 profile image
Break60 in reply to

Tceinvestments

Yes I went back on intermittent ADT each time I had RT to mets. Subsequent scans when PSA increased after stopping ADT found the mets hit with RT were no longer visible. See my profile.

So my conclusion is that RT killed the specific mets hit with RT but ADT kept progression of other mets at bay until I stopped ADT. I have Gleason 9 cancer but I’ve had no more than two mets visible at a time so it’s aggressive PCa but low volume AKA

“ oligometastatic” .

in reply to Break60

Thanks so much Break 60.

I so appreciate hearing other stories.

Break60 profile image
Break60 in reply to

You’re welcome but it’s just one story and not necessarily applicable to your situation. There’s no proof that SBRT to mets prolongs life. It just kills the visible mets but the invisible ones (and there are millions) are still there. But in the case of pelvic lymph nodes, when just two iliac nodes were imaged , I zapped ALL pelvic lymph nodes just in case and have had no recurrence anywhere in pelvic lymph nodes .

One can’t very well apply RT to every bone in your body when you get mets in one or two bones!

Moespy profile image
Moespy

I had PSMA in late December at NIH and they found expression in 1 pelvic node and 2 other small spots in the same area. I plan on having these spots treated with SBRT in conjunction with ADT. I am trying for a cure and this will not happen without the ADT. In theory the SBRT will kill what can be seen and the ADT will clean up the micrometastasis that cannot be seen.

I tried very hard to convince myself not to add ADT but without it the cancer will continue to metastasis and most importantly will spread outside of the local pelvic area.

Plan is to start ADT 2 months prior to ADT and then continue on ADT for 2 years. Hoping to then be cancer free. Cure is a longshot but if it does not work I can't imagine wishing I had not taken this approach. I can however see myself regretting not using ADT if the cancer comes back in a distant location.

The logic of not using ADT went out the window for me once I consider the micrometastasis. SBRT will miss them the same way IBRT missed them after my first BCR.

GP24 profile image
GP24 in reply to Moespy

I try to slow the tumor progression, I do not think there is cure. Just a few thoughts:

a recurrence after salvage radiation is often defined as a PSA value above 2.0 ng/ml and rising. If you take that definition, you do not have a recurrence yet. On the other hand, you can see your recurrence in the PSMA PET/CT.

You do not really need ADT before SBRT, because you do not need to shrink your mets before radiation. After SBRT I would just do 18 months of ADT. The Nabid study showed that this is "enough". No benefit for longer ADT.

Not believing in cure, I just do six months of ADT to avoid the side effects.

Moespy profile image
Moespy in reply to GP24

I like playing this game of dissapointment with myself. I thought I would be cured after RP and then again aftet IBRT, so now I am going to go ahead and disappointe myself again with this cure. Lol!

I will be interesting to see what my RO recommends when I am able to meet with him regarding the results of the PSMA Scan. Had needle biopsy a week ago Monday and still waiting for result. Once I have that verification I can meet with RO.

I will definitely discuss your recommendation as well what I have written here for treatment and will of course listen to his assessment.

I really appreciate and thank you for the comment, reference and information.

Jim

charlesmeyers1964 profile image
charlesmeyers1964 in reply to GP24

there is no cure no matter the terminology of the treatment or the treatment. u take treatments until they don't work then move on. at one point u have ran out of treatments then u try trials until they don't work then u die. me i'm on my 11 year without top notch treatments that i have no idea the spelling of the treatment nor type of it. it works until it doesn't.

charlie

Tall_Allen profile image
Tall_Allen

Dr Ost did a pilot study, using delay in ADT as the outcome:

pcnrv.blogspot.com/2017/12/...

I point out the problems:

• He used detection of 3 or more mets as the point where the SBRT-treated men had to start ADT, whereas only 1 additional met was required for ADT in the untreated control group - a much lower bar.

• Even with the lower bar, there was no statistically significant difference in ADT-free survival with 95% confidence. He pre-specified that he was willing to accept only 80% confidence because he was committed to doing an expanded phase 3 trial anyway. Using the lower confidence limit and the lower bar, the difference was 8 months delay in the start of ADT.

I saw another very small (n=15) uncontrolled trial that suffered from an even more grievous conceptual error. They compared outcomes to expectations based on PSADT.

europeanurology.com/article...

Their fatal error is this: Treatment of oligomets with SBRT undoubtedly controls local progression and greatly reduces PSA because most of serum PSA comes from those mets that are large enough for imaging to detect. However, they used PSA progression as their endpoint - a self-fulfilling prophecy. Treating PSA is not the same as treating the cancer.

GP24 profile image
GP24 in reply to Tall_Allen

If you radiate your mets you treat part of your cancer. I think this will be the bigger part of your tumor burden since it is visible with imaging. I assume, based on several small studies, that this will be beneficial and do not have the time to wait for data that will finally prove this.

Tall_Allen profile image
Tall_Allen in reply to GP24

It is a mistake to think that the cancer you can see is a larger part of your cancer burden than the cancer you can't see. It is a bigger part of your tumor burden because the definition of a tumor is a large enough clump of cancer cells to see. Cancer that has been seen in the bone has to be systemic and exists in reservoirs everywhere. One has to treat what one can't see, using systemic treatments. Whether metastasis-directed therapy has any benefit has never been shown, even in small studies, but if it is safe to do so and doesn't preclude systemic therapy - why not try it?

Here's one way to think about it:

healthunlocked.com/advanced...

Ahk1 profile image
Ahk1 in reply to Tall_Allen

May be that is why Dr. Morris didn’t show any interest when I talked to him about oligometastatic or may be I misunderstood what he says and suggested me to start ADT in August/2018 and I never did. Now, I think I have to listen to him and start without trying to chase the Mets with pet scans?

Moespy profile image
Moespy in reply to Tall_Allen

3.5 years ago my fear of ADT side effects drove my decision to not include ADT with my IMRT sessions. I regret that decision now but did not have the data or confidence to include ADT at that time.

I used this same apprehension to justify the thought that whack-a-mole (SBRT without ADT) would delay progression. Thinking of the micrometastases circulating through my pelvic lymph system has me looking through the fear to a systemic treatment that includes SBRT and ADT.

Hirsch profile image
Hirsch in reply to Moespy

Some men have minor to negligible side effects from adt...try it.

Ahk1 profile image
Ahk1 in reply to Hirsch

Thanks, Hirch.

I am just concerned with resistance setting in earlier

407ca profile image
407ca

AHK1

I am in the process of diong radiation to mets as I write this. My mets were discovered by a psma pet scan. It is only due to having that scan that I am able to treat the mets. I have never had ADT.

A brief history...

Primary treatment in 2012 using external radiation, no ADT. Rising PSA discovered in 2018 which led to bone,ct,mri, and Axumin PET scan. Prostate lesions were evident.

I found a clinical trial in Europe that was trying a new HIFU method for treating recurrent cancer. I went there and was given the PSMA PET scan. It found the distant mets that we are treating now (in the US,using the European PSMA pet scan). It is only due to this scan that focal treatment became an option . The PSMA is not yet approved in the US.

Only yesterday, during my post treatment interview, my radiologist was showing a student,and myself,the difference between the psma and axumin scans. Clearly the PSMA scan was more sensitive, at least in my case.

After completing radiation of the distant mets here in the US,I will go back to Europe to do the HIFU to the prostate lesions as they cannot be radiated a second time.

This may or may not be a cure, hopefully so but likely not. I will be satisfied with a postponement of castration in any form.

All the best.

Break60 profile image
Break60

I’ve read that sbrt to bone mets has been used to delay ADT for something like two years. I believe that sbrt does indeed stop the met(s) that it’s applied to but others are always in the system and eventually grow large enough to be imaged.

I can only offer as proof the fact that I’ve had RT to mets three times in the last four years and none have returned although new ones appeared elsewhere.

The unfortunate fact is , as TA has pointed out, that where there’s one met there’s more you can’t see and Systemic tx is necessary.

Ahk1 profile image
Ahk1

THANK you all for your response. I truly appreciate your help sharing your experiences. I have been going through VERY tough times and being very hesitant to make an informed decision. I today have decided to not chase the Mets and go for IADT and if at any time in the future any Mets can be seen, I can always use targeted therapy for it and all these fansy pet/ct scans will certainly be available everywhere. I hope this is the right decision but definitely not sure. Thanks again

Claud68 profile image
Claud68

Please excuse my bad English. My husband has a Gleason 9 (4+5) and had a total prostatectomy in December 2018. A few weeks later, the PSA rised from 2,16 to 2,55 in 10 days, so it was clear, he has mets. He had a Ga- PSMA on the 28th of January and they found 6 lymphnods. My husband doesn´t want ADT, and he will benefit from a new treatment in Vienna (Austria) :the 177Lu-PSMA.

Claud68 profile image
Claud68

It is very expensive but he needs only two or three injections every four weeks and then the mets - even the microscopic ones, will disappear. The patients who want to make this therapy are all doctors and they know , of course, that will be an efficient treatment. i will tell you the results. The first injection will be on the 27th of February. Maybe this could also help some of you .

Ahk1 profile image
Ahk1 in reply to Claud68

Thank you very much, Claud68. We will be waiting for your updates

Claud68 profile image
Claud68 in reply to Ahk1

Hi AHK1, here is the first update after the Lu177-PSMA treatment in Vienna two weeks ago:

Claud68 profile image
Claud68

Two weeks after the first injection of Lu177-PSMA in Austria on March 6th (one week later than expected), my husband has no unpleasant remaining side effects at all. He needs only a little more sleep or a little nap in the afternoon. And his blood tests are very good, even better as a month before the treatment with Lu177-PSMA ( i.e the blood tests two and a half months after the prostatectomy).

As expected, his PSA rised in only five weeks from 2,55 to 4,40 because of the dying cancer-cells which are freeing now their remaining PSA. So we are really happy to have chosen this way instead of a short-lived hormone-therapy (ADT) for a G9, together with a classic radiotherapy on the six detected lymphnode-mets.

The next injection will take place on April 4th and we hope that it will be the last one.

A Ga-PSMA PetScan will then show several weeks later, in May, if there are no remaining mets. And we'll also see if the PSA dropped completely down. We hope this will be the case .

I'll let you know and keep you informed because it can give hope to all of you who are looking for alternative treatments as we did!

Ahk1 profile image
Ahk1 in reply to Claud68

Thank you very much for the update and wishing you a great success

You may also like...

Looks like just one bone met. Radiation or not?

For a quick recap, I was treated with seeds and external beam in 2006. PSA dropped slowly over a few

Decision time – looking for opinions/advice please

node met from 14mm to 21mm. My PSA is still dropping, currently at 0.21. My MO ordered a PSMA...

Distant Lymph node treatment options?

9 - 4+5 / pT3bN1M1), PSA 198 with Pet CT PSMA F18, MR, Bone Scan. No bone mets but multiple pelvic...

Dads case, psa climbing on zoladex

time for brca? What about a PSMA scan? I’m asking for targeted therapies at this stage like Lu-177,...

Is surgery, radiation or Lu-177 therapy appropriate for my case?

to 10 as of 3/18/2010 On 3/16/2020, I did a Ga68 PSMA PET scan at UCLA and the report stated that...