Locally advanced and advanced prostate cancer, staging, treatments, best practice and anything good to know

I will start things off by suggesting you read my profile. My husband is advanced metastatic so has been through a range of treatments. In common with you we try and hit the cancer hard and fast, mainly because of the aggressive nature of it. I was very reluctant to post a profile for a long time but in the end decided to do it to try and demonstrate that treatments are available even when you get a really poor initial diagnosis and prognosis. I know you have asked for experience with locally advanced but if there is anything in our experience that you want more information on then just ask.

Hi !

Always happy to see you starting of with a good and interesting response and like I’ve said earlier, I’m firm believer to go all in with treatments.

In Sweden I’m not really sure that’s the mentalitet but then of course prostate cancer management is primarily prostatectomy and it’s extremly different in Sweden when it comes to Radiation treatment.

I have a friend that several years ago did prostatectomy, had a recurrence and was told that either you can do HDT or we can radiate you…. Hopefully that’s not the message you are given in the whole of Sweden.

Thanks Anyway and gives me hope when you say that the aggressive approach is considered because that’s my totally personal flavour as well.

Best wishes - Ulf

I don't know whether you have heard of Dr Mark Scholz but he has produced a whole range of videos which can be thought provoking. Have a look at this one.

https://youtu.be/ygZNfQhrrYc?si=GXXMBcIcoJfVtWC5

PRCI I think is very good. Content is often great and I like the good doctor  This clip is very interesting from my perspective. But I think what is really interesting is that some metastatic PC may already be curable but of course it’s to early to tell of course.

Even he says that early is better, more can be better but you need a good judgement and to really be able to read the data correctly.

This clip also confirms to me that with new technologies it becomes even more unclear the staging of locally advanced, avdvanced, high risk, very high risk and etc.

Hi Ulf

I have recently joined this forum. Main reason was to hear opinions from.others and learn from their experiences.

I habe been diagnosed with Prostate Cancer in early 2023.

Psma scan showed it was confined to the prostate

No local.or distant metastases.

Underwent radical prostectomy. Was put on surveillance but no adjuvant radiation or ADT was given

On hindsight my onco team feels it ahud have been given.

Anyways in mid 2023 my scan showed 2 small iliac lymph nodes with tumors.

Then i was given radiation for 6 weeks in october 2023.

Scans in april 2024 showed all clear.

To be noted that despite RP and radiation my psa never fell to undetectable levels. The nadir was 0.03 in feb 2024 and since then is steadily creeping up. Still at decimal.levels but the psa doubling time is working out to 3 months on an avg. So yes its aggressive.

Recent scans showed small tumor in the same spot where radiation was given. Rt iliac lymph node.

So.now my onco will be starting ADT as monotherapy of GNRH agonist/ antagonist or opt for combined tberapy.

I have read about all the current medicines tbeir mechanisms of action etc, and all these meds have varying side effects ranging from fatigue, wt gain, osteoporosis, cardiac long QT syndrome, breast enlargement ,liver enzyme elevation,low Hb, low WBC, seizures, hot flashes etc etc.

I am meeting my onco on 27th sept and am well prepared to hold an exhauative discussion on treatment paln and the pros and cons.

My own pref would be to start with mono therapy of gnrh antagonists, observe psa and if required to start second tberapy of androgen receptor blockers like enzalutamide, or darolutamide.

But finally we have to go by what the onco feels is best for me.

Yes one more thing, i also consulted a onco surgeon and he was of the opinion that i should for dissection of the iliac nodes since its spread only upto their and once removed my psa may fall. Coz thats the only active subcentimetric tumor.

I will share further updates. Stay strong. God bless you.

Hi Warrior68

You have had a journey yourself I must say and really doesn’t sound fun when they are doing ’whack a mole’ in order to try to control the cancer so, all my thoughts to you.

Question, after they did you first Pet Scan and saw the LN, was it never on the table with first ADT and then salvage radiation? Is it possible for you to have more radiation to the pelvis? Added comment: I read again that in hindsight they should have put you on ADT but your still waiting for dialouge and descision.

Like you say, there are lots systemic therapy treatments in the toolbox to get the cancer under control and in remission.

Could be interesting to hear what ONCO would say to you being treated Lutetium 177 to really try to hunt down your LNs. I mean, it seems they show up on Pet scans so they have PSMA expression.

Yes, lets keep us updated and fingers and toes crossed for a good respons

Best wishes - Ulf

Hi Ulifhub.

Good morning it's great to meet you today I do hope that things are going ok with you??

I'm currently on HT tablets and injections and I have been since 2023. This has brought my PSA down to single figures.

Unfortunately though my PSA has increased over the past 3 tests so I have been told that the cancer is now in all of my pelvis.

I have recently under gone RT on the hot spot in my pelvis and this seems to have calmed down my chronic bone pain and long may it last.

I have got my next blood test (PSA) this Friday and I will be seeing my consultant next Tuesday so hopefully things will have calmed down!!!

I do hope that this helps???

Prostate Worrier.

Hi Prostate Worrier !

Very nice to hear from and I’m as well as can be espected waiting to take my next 3-month PSA test. Hopefully it stays low.

Seems like you’ve had your rough journey but you seem to respond well to ADT and hopefully they can do some adjustments to the treatment to try to put in the undetectable area. If I understand it correctly it’s only in the prostate they can see PC on the scans. No possibility to give HDR Brachy or External beam to try to kill of the cancer in the prostate?

Keeping my fingers and toes crossed that your consultation goes well and your PSA keeps in check. Lets keep each other updated.

best wishes - Ulf

Hi Ulifhub.

Many thanks for your reply, sadly my cancer has escaped from the prostate meaning I am now "Treatable but not Curable"

Yes the Radiotherapy seems to have had a good reaction so far so it will be great to see wether it has made any difference to my PSA numbers???

Yes I hope that everything goes well for you as well.

Please please let me know how things go if you don't mind???

Prostate Worrier .

Hi !

Yes, kick the beast as much as possible and even if it’s not curable you may have many good years areas of you and, who knows, progress in treatments are really excellent and if I understand you correct you have not tested radio isotopes like Lutetium 177 and others that are currently in trials and have really good responds.

We’ll keep each other updated.

Best wishes - Ulf