Notification

Error

Diagnosed de novo metastatic hormone-sensitive: My experience with early 177Lu-PSMA

Email this conversation Print this conversation
User
Posted 18 Jul 2026 at 15:27

Hello everyone,

I wanted to share a brief update on my journey in the hope it might help others looking into advanced staging and early theranostics.

A couple of years ago, I had a highly suspicious PI-RADS 5 lesion on an MRI, but a targeted biopsy came back completely negative. My local doctors told me not to worry, but my PSA kept rising. Trusting the data trend, I pushed for a private 18F-PSMA PET scan. It completely changed my staging, revealing a dominant metastasis in my pelvic bone before the cancer had breached the prostate capsule.

After doing extensive research as a scientist, I chose to look outside standard protocols. I traveled to a specialist theranostics clinic in Germany to receive Lutetium-177 PSMA radioligand therapy early, while my disease was still hormone-sensitive. We also ran a genomic liquid biopsy and found I carry a somatic FANCA mutation, which likely made the cancer highly sensitive to the radiation.

After just two cycles of Lutetium alongside an anti-androgen, my PSA became completely undetectable (<0.01) and my latest follow-up PSMA-PET scans show a complete molecular response—the bone metastasis has completely disappeared. I'm currently dealing with the standard intense fatigue from the hormone blockade, and my oncologist and I are discussing safely de-escalating treatment soon to get my quality of life back.

I'm currently co-authoring a formal medical case report on this protocol with my treating professor in Germany. If anyone is navigating a false-negative biopsy, dealing with hormone-sensitive metastatic disease, or considering traveling for early radioligand therapy, I’d be very glad to share what I've learned about the process.

User
Posted 18 Jul 2026 at 15:27

Hello everyone,

I wanted to share a brief update on my journey in the hope it might help others looking into advanced staging and early theranostics.

A couple of years ago, I had a highly suspicious PI-RADS 5 lesion on an MRI, but a targeted biopsy came back completely negative. My local doctors told me not to worry, but my PSA kept rising. Trusting the data trend, I pushed for a private 18F-PSMA PET scan. It completely changed my staging, revealing a dominant metastasis in my pelvic bone before the cancer had breached the prostate capsule.

After doing extensive research as a scientist, I chose to look outside standard protocols. I traveled to a specialist theranostics clinic in Germany to receive Lutetium-177 PSMA radioligand therapy early, while my disease was still hormone-sensitive. We also ran a genomic liquid biopsy and found I carry a somatic FANCA mutation, which likely made the cancer highly sensitive to the radiation.

After just two cycles of Lutetium alongside an anti-androgen, my PSA became completely undetectable (<0.01) and my latest follow-up PSMA-PET scans show a complete molecular response—the bone metastasis has completely disappeared. I'm currently dealing with the standard intense fatigue from the hormone blockade, and my oncologist and I are discussing safely de-escalating treatment soon to get my quality of life back.

I'm currently co-authoring a formal medical case report on this protocol with my treating professor in Germany. If anyone is navigating a false-negative biopsy, dealing with hormone-sensitive metastatic disease, or considering traveling for early radioligand therapy, I’d be very glad to share what I've learned about the process.

User
Posted 13 Sep 2026 at 19:33

Hello Al Tony

i live in France -  there is a state health system  -  but the route I took is so off piste that I paid for the majority myself.  And it is not the cheapest of treatments.   I am now under a French oncologist -  so I can get the medication paid for by the French system.  The route is not straightforward -  for example a PSMA PET scan in switzerland you need a prescription from some doctor -  they do not care who -  being swiss they hand you bill as you exit the PET scan room.

In Germany I am basically self referral and that has worked -  but again I pay for everything.  I am now trying to cut the ADT since I have profound tiredness and just continue with the enzalutamide -  I had a difficult discussion with the French oncologist but managed to prevail.  I will see what happens in the coming months.

One aspect that I did not properly appreciate was a blood biopsy to look for mutations of the tumour...  this showed up a mutation that maybe explains the good response to the 177Lu therapy (but maybe not)

I have had a very successful 177Lu treatment -  but we are all different and our tumours are individual   -  nothing can be generalised.

 

Good luck to everyone fighting this disease  

Crispin

Edited by member 14 Sep 2026 at 16:48  | Reason: Not specified

Show Most Thanked Posts
User
Posted 18 Jul 2026 at 16:07

Originally Posted by: Online Community Member
After just two cycles of Lutetium alongside an anti-androgen, my PSA became completely undetectable (<0.01) and my latest follow-up PSMA-PET scans show a complete molecular response—the bone metastasis has completely disappeared. I'm currently dealing with the standard intense fatigue from the hormone blockade, and my oncologist and I are discussing safely de-escalating treatment soon to get my quality of life back.

Hello Crispin

I'm not a scientist, but I'm rejoicing in your good news. I hope that the treatment can be adjusted to improve your quality of life.

User
Posted 29 Jul 2026 at 23:00
Great update thanks
User
Posted 30 Jul 2026 at 06:24
Thank you so much for sharing Crispin. Hoping for the best for you. Do the doctors say if the FANCA mutation also sensitize to Olaparib? Hope you never need it but that it s an option if you do later on.
User
Posted 30 Jul 2026 at 06:41

if the FANCA mutation also sensitize to Olaparib?

Yes -  this is an option that can be used in the future if needed...

 

User
Posted 13 Sep 2026 at 11:06

Hello Crispin,

thankyou so much for that post.

I have been looking into Lutetium 177 therapy as an early intervention having had surgery that was a failure from the outset and have had salvage RT recently but its too early to say if it is working as yet.

Its unlikely I will be able to access this at all on the NHS in the UK and even getting it privately might be difficult so I am very interested in your experience and will follow it closely.

Is a medical referral neccessary or can one self refer?

Can you let me know which centre you attended so I can look into it further please?

Thanks again.

Al

 

 

 

 

User
Posted 13 Sep 2026 at 12:55

This sounds interesting, and I think the future of Lutetium 177 is likely to be up-front.

Which anti-androgen are you on?
Are you on any LHRH/GnRH ADT medications or ARPI medications?

When coming off LHRH/GnRH ADT medications, I always recommend having your Testosterone checked with each PSA test, because you can't make sense of PSA readings unless you know where your Testosterone is. Using anti-androgens alone boosts Testosterone anyway which might make this more difficult to track, but probably still worth trying.

Do keep us informed, and best wishes.

User
Posted 13 Sep 2026 at 15:30

Crispin,

thankyou so much for the information you sent which I will follow up on.

I am not allowed to reply by PM as I am too new and may be allowed to do so once I have more posts on this site.

Your help is much appreciated.

Al Tony

User
Posted 13 Sep 2026 at 19:33

Hello Al Tony

i live in France -  there is a state health system  -  but the route I took is so off piste that I paid for the majority myself.  And it is not the cheapest of treatments.   I am now under a French oncologist -  so I can get the medication paid for by the French system.  The route is not straightforward -  for example a PSMA PET scan in switzerland you need a prescription from some doctor -  they do not care who -  being swiss they hand you bill as you exit the PET scan room.

In Germany I am basically self referral and that has worked -  but again I pay for everything.  I am now trying to cut the ADT since I have profound tiredness and just continue with the enzalutamide -  I had a difficult discussion with the French oncologist but managed to prevail.  I will see what happens in the coming months.

One aspect that I did not properly appreciate was a blood biopsy to look for mutations of the tumour...  this showed up a mutation that maybe explains the good response to the 177Lu therapy (but maybe not)

I have had a very successful 177Lu treatment -  but we are all different and our tumours are individual   -  nothing can be generalised.

 

Good luck to everyone fighting this disease  

Crispin

Edited by member 14 Sep 2026 at 16:48  | Reason: Not specified

User
Posted 14 Sep 2026 at 08:00

Originally Posted by: Online Community Member
I am now trying to cut the ADT since I have profound tiredness and just continue with the enzalutamide - I had a difficult discussion with the French oncologist but managed to prevail. I will see what happens in the coming months.

There has been a trial of using just Enzalutamide and it worked well. I wish that could be prescribed in the UK, but rules are that it can only be prescribed (on the NHS at least) with an LHRH ADT medication. For elderly frail metastatic patients, i have on a number of occasions suggested they ask their oncologist about using just Bicalutamide, because it has fewer side effects, it's bone strengthening rather than bone thinning, and with other comorbidities, they are not looking for 10 year cancer control. However, Bicalutamide can last too short a time before it stops working, and Enzalutamide alone would be better if available. I'd love to see a similar trial with Darolutamide which might be better still as being a large molecule, it can't get through the blood/brain barrier and hence has fewer side effects.

User
Posted 14 Sep 2026 at 08:08

Hello Andy

Getting enzalutamide prescribed without an ADT in France took some effort.  I believe that these are guidelines rather than rules ...  but which oncologist is going to open themselves up by not following the guidelines. 

I would prefer Daralutamide since as you say it does not get into the brain...  but I failed with that ...

Anyway the route forward is not clear -  we should just push ahead and reporting what happens to a forum such as this will allow information to spread.

Good luck to everyone

Crispin

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2026 Prostate Cancer UK