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PSA rise but no metastasis

MiRob profile image
32 Replies

A friend of mine had treatment for oligo metastatic disease and has been placed on ADT treatment for 2 years afterwards before he started a ADT pause. (Supported by his medical team)

He has been off the ADT for a little over a year now and his PSA has steadily increased to around 4,0. (He still has his prostate)

The issue is that no new metastasis shows up on the scans nor do the old bone lesions show any signs of recurring PC. He do not suffer from any of the medical conditions that could cause elevated PSA.

(He also had several PSMA pet scans during the last year all showed no signs of PC activity)

What could be the cause? His medical team have no answers of the cause.

His doctors want to put him back on ADT now but he is in doubt if its an idea to wait for visual signs on scans of recurring PC.

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MiRob
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32 Replies
Tall_Allen profile image
Tall_Allen

Just because you can't see it on imaging, doesn't mean there is nothing there.

MiRob profile image
MiRob in reply toTall_Allen

True TA. But he is in doubt if it’s an idea to wait for visual signs on scans of recurring PC to find out if this/these spots could be treated with radiation therapy before going back on ADT. Your thoughts? Thank you

Seasid profile image
Seasid in reply toMiRob

Just don't wait until you see the cancer. Start ADT.

It is a bad idea to wait for the cancer to show you and spread. How did you come up with this idea? Just curious.

MiRob profile image
MiRob in reply toSeasid

The idea was use the “open window” before being placed on ADT to remove any few PC spots found if possible. (Oligo metastatic belief. And only if max 2-3 spots show up) Some at The Mayo Clinic share the same beliefs.

Seasid profile image
Seasid in reply toMiRob

It is a bad idea. I would rather go back to ADT and maybe later have a new ADT Holliday. Believe me this was discussed here multiple times.

To wait for the cancer to show up on the scans in order to radiate it is a bad idea. You should actually be happy that nothing shows up and go back to ADT and maybe later have a holiday again.

MiRob profile image
MiRob in reply toSeasid

Thank you will tell my friend.

Still_in_shock profile image
Still_in_shock in reply toSeasid

Bad idea?

I have the #1 Uro/Onco at UCLA (Dr Rettig) tell me that nearly 3 years of Neoadjuvant and adjuvant ADT (Lupron and Abi) with WPRT radiation in between is enough after BCR.

Pulled me off, and told me if PSA comes up, I get a PSAM/PET and they'll radiate any spots that come up.

I agreed, Ive had enough of psychological and metabolic effects, heart problems from ADT.

So do I go with online discussions? Or a Dr that studies PCa for a living?

Seasid profile image
Seasid in reply toStill_in_shock

I understand your thinking. I was also said by my medical oncologist that if my PSA starts to rise I will get the PSMA pet scan (he actually said pet scan) and we will radiate the spot.

I agree with TA if it is safe to radiate the metastasis why not, but I personally after my prostate SBRT irradiation rather try to escalate the system treatment.

My current MO would agree with you my old MO wouldn't but I personally think that until I feel fine without radiation or operation I will probably try to avoid it. Therefore I don't know but you are facing this decision therefore consultant multiple doctors.

I can say that with the SBRT irradiation of my prostate I possibly have now to the radiation resistant cancer in my prostate but I am still not sure in full consequences. Maybe it is a plus maybe it is a minus.

The plus could be that we are saving up drugs for the future treatment. The minus is that I am facing the side effects of the radiation.

Every treatment has potential problems and advantages. I maybe feel safer when I add a system treatment because PC is a systemic disease.

I believe nobody really knows and we are just experimenting on ourselves.

You know best your situation therefore you should decide for yourself.

Radiation is also not within its own risk.

Best of luck

Seasid profile image
Seasid in reply toSeasid

This is from the AI.:

I didn't check it but it is always interesting to see what the AI said.

Navigating prostate cancer treatment decisions involves balancing efficacy, side effects, and quality of life. Here’s a structured approach to your situation:

### 1. **Trust Your Specialist, but Stay Informed**

- **Dr. Rettig’s Expertise**: As a leading uro-oncologist at UCLA, his recommendation aligns with current evidence and personalized care. His plan reflects modern approaches:

- **ADT Duration**: For high-risk cases, 18–36 months of ADT combined with radiation is often standard. Stopping at ~3 years may balance long-term control with minimizing toxicity.

- **Advanced Imaging**: PSMA PET scans allow early detection of recurrence, enabling targeted treatment (e.g., metastasis-directed radiation) rather than indefinite ADT.

- **Guideline Alignment**: The National Comprehensive Cancer Network (NCCN) supports intermittent ADT or stopping therapy in select patients to reduce side effects, especially when recurrence can be managed with salvage therapies.

### 2. **Addressing Your Concerns**

- **Quality of Life**: ADT’s psychological/metabolic effects and cardiac risks are valid reasons to pause treatment. Your doctor is prioritizing your well-being alongside cancer control.

- **Recurrence Plan**: The strategy to act only *if* PSA rises (with imaging and targeted therapy) is proactive and avoids overtreatment. Studies (e.g., STOMP, ORIOLE trials) show promising outcomes with metastasis-directed therapy for oligorecurrent disease.

### 3. **Online Discussions vs. Expert Guidance**

- **Online Variability**: Forums often highlight extreme cases or outdated practices. Treatment plans are highly individualized, and anecdotes may not apply to your case.

- **Evidence-Based Care**: Dr. Rettig’s approach is likely grounded in the latest data. For example, the EMBARK trial (2023) supports intermittent ADT in certain scenarios to reduce side effects without compromising survival.

### 4. **Next Steps**

- **Clarify Monitoring**: Ensure a clear PSA-testing schedule (e.g., every 3–6 months) and confirm PSMA PET access if needed.

- **Cardiac Monitoring**: Address heart risks with a cardiologist; lifestyle changes (diet, exercise) may mitigate metabolic effects.

- **Second Opinion**: If doubts persist, consult another specialist (e.g., at MD Anderson, MSKCC) to validate the plan. This can ease anxiety and reinforce confidence.

### 5. **Key Takeaway**

Your doctor’s plan reflects a nuanced, patient-centered approach. Stopping ADT does not mean “giving up”—it’s a strategic pivot to prioritize quality of life while remaining vigilant. Trust in your care team, but advocate for regular follow-ups and open dialogue about any changes in your health.

DeepSeek said

Seasid profile image
Seasid in reply toSeasid

I was diagnosed as de Novo polymetastatic pc and the doctors wanted me on intermittent ADT injections but I refused that patient centric approach and I am still alive after almost 7 years. I decided for myself.

Seasid profile image
Seasid in reply toSeasid

I am on ADT for 6.5 years now and I am just happy that I am still alive.

Tall_Allen profile image
Tall_Allen in reply toMiRob

That's why I think Kwon harms patients.

Bestdays profile image
Bestdays in reply toTall_Allen

What is Kwon?

Murk profile image
Murk in reply toBestdays

Maybe he was referencing Dr. Kwon and High-intensity focused ultrasound for the treatment of prostate cancer??

Bestdays profile image
Bestdays in reply toMurk

Thank you, that makes sense.

Xavier10 profile image
Xavier10 in reply toMurk

no, he is referring to something else. Kwon likes to use the Choline scan, even today. Not sure why, when there is something a hell of a lot better. But he does wait for scans to pick it up. I think he figures the Choline scan picks things up quicker. But it is also more inaccurate

Mgtd profile image
Mgtd in reply toMiRob

Is he being treated at Mayo?

MiRob profile image
MiRob in reply toMgtd

No he is being treated in Denmark and Finland. But Mayo is considered one of the best places for the treatment of PC.

Oeje14 profile image
Oeje14 in reply toMgtd

I want to get the MRI there much more accurate. Looking into it but when I email them they don’t get back to me.

Tall_Allen profile image
Tall_Allen in reply toMiRob

I agree 💯!

Seasid profile image
Seasid

Radiation is also not fun. It is better to avoid it. It has side effects plus something can always go wrong.

MiRob profile image
MiRob in reply toSeasid

True. I myself have had it twice to a PC metastasis in the bladder.

Seasid profile image
Seasid in reply toMiRob

My strategy is to delay radiation therefore I am on ADT. Actually I had prostate radiation but to the radiation most resistant strain survived and now I am Bicalutamide and re-irradiation of the prostate is either not possible or it is very toxic. I am happy as it is now. I definitely don't want to stop Bicalutamide and reradiate my prostate if I can avoid it.

NanoMRI profile image
NanoMRI

I learned this disease grows at very low PSA values and spreads ahead of PSA and radiological progression. After having had four PSMA PET CT over seven years I wonder if my remaining cancer is PSMA avid; or is it that I do my imaging before 0.1? I rely on several comparative imaging methods and second radiological opinions - no singular imaging method and no singular radiology opinion. Also, I utilize liquid blood biopsy testing for a third leg of investigation.

Seasid profile image
Seasid in reply toNanoMRI

You should get FDG pet scan at some point if you wish to exclude PSMA negative cancer. But that is hopefully not yet your problem.

Seasid profile image
Seasid in reply toSeasid

You may wish to read the following post about scans:

healthunlocked.com/advanced...

I found it useful.

If I wish to see if my cancer is really alive (my PSA is 2.3 on degarelix ADT injections and Bicalutamide.) I should get FDG pet scan.

MiRob profile image
MiRob in reply toSeasid

Thank you for the link 🙏🏻

NanoMRI profile image
NanoMRI in reply toSeasid

many opinions of course. As I commented I do comparative imaging. To date not FDG for prostate cancer; just did one for my melanoma but it is different. Based on my efforts and consultations I would likely chose Choline over FDG - yes I am aware of what some say. Also in contradiction, I get imaging at very low PSA values because I am not willing to let cancer grow in size (and volume) to where darn near any imaging might work. But then, I walk a different path which to date is serving me very well. All the best to all of us looking for this beast to determine treatment strategy.

MiRob profile image
MiRob in reply toSeasid

You are correct. My friend also had some NAF PET scans along with the PSMA PET scans. Nothing showed up on these either.

NanoMRI profile image
NanoMRI in reply toMiRob

I find liquid blood biopsy testing - looking for circulating signs - very informative. These can present ahead of PSA and imaging. I've had three to date - first two NED. Third, surprisingly and fortunately, provided a heads-up on very unexpected metastatic melanoma; giving me a true curable opportunity.

Xavier10 profile image
Xavier10

Could always be the prostate doing something it's supposed to do. I don't have any answers for you. PSA is not the be all and end all of PCa.

Flapr profile image
Flapr

I had laser ablation in 2018 and my PSA started to go up. All the MRI were negative but the PSA pet scan show it. The Biopsy was positive and had SBRT. My PSA for now is low (.58)

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