PSMA scan report is in : (((

It takes 2-3 weeks for Orgovyx to drop the testosterone down to minimal levels so side effects are still TBD. I was lucky and had none other than having to fight the loss of muscle and bone. I was not on an ARSI but from what I know you should push for it because it will make the ADT more effective without adding side effects (others actually on Nubeqa can add some real info). Despite what show on the PSMA scan there is a good chance that there are other smaller spots that did not light up due to the low PSA. However, most of those are probably in the local area so will be hit with the planned radiation. Wish you and your husband a good course of treatment.

..lots of men have had more and wider spread mets..the ADT will stop the cancer growth and the radiation can zap all known spots..and since you had pet scan, now its all on the table...so take heart and I imagine in 3 months there will be a much more positive outlook ! best of luck to you !

Thanks Jim for your input and encouraging words - it is much appreciated.
Thanks also for well wishing 💗.
Unfortunately it is Friday, so the fight for correct treatment will continue Monday and onward.
We will also try to make app. for second opinion at UCLA with Zoom consultations. Local UC lost all credibility for me ... From the beginning my husband's case was not treated with any urgency regardless of the Decipher and pathology reports. I had to fight even for this PSMA and MRI and his rising uPSA was also regarded as probably "nothing" (???). For high risk patients sRT protocol should START at less than 0.2 , and according to some papers even at 0.1.
ADT - yes, at 2 weeks testosterone should be very, very low and than we will see how he feels. We will order PSA and testosterone test at 2 weeks ourselves, as we did most of the uPSA tests so far. If we waited for doctors orders - this BCR would be missed at this super early stage. 😤

@xahnegrey40

Thank you for comforting words @xahnegrey40 💖- you said what I really needed to hear in this moment ... I will start imagining nice walks in September 🍁. I really hope that the wheel of fortune will finally start to turn for us in positive direction already 🙏 . Thanks also for wishing us luck : ))), we will need it, that is for sure.

Sorry to hear they ignored what you asked them to do originally. Hopefully, you can get this treated appropriately. Salvage radiation plus Zapping whatever else they found, that is beyond the salvage radiation area. Maybe the biopsy will eliminate the need to do that. I understand your frustration. At least they agreed to do the PET scan. Hopefully the radiation can bring his PSA back down a lot.

@jeffmarc

Thanks Jeff for the encouragement and your valuable input 💗 and for your understanding.

It's been veeery loooong year for us with constant battles with the system and endless frustration 😞 , I am so exhausted. I just praise the Lord for finding this forum and all of you here since otherwise who knows what would have happened if I did not now what to look for or what to ask for ???

Yes, hopefully RT will cause unrecoverable damage to PC cells 🙏 and very, very long remission. 🧿

@jeffmarc

\\Sorry to hear they ignored what you asked them to do originally

Jeff, what exactly did they ignore?

@denis76
They ignored our request to take some lymph nodes out during prostatectomy. It is actually standard procedure - surgeons take some nodes out to examine them for cancer mets. One of my husband's nodes was faintly glowing on PSMA scan and we insisted that node be extracted and examined but surgeon did not do it ! I suppose he was in a hurry to finish surgery since he was having evening fight to DC. When I asked if any nodes were sampled he told me over phone (after surgery) that he did not take any out since they all "looked normal".

I guess he has "PSMA avid " vision *sigh

Hi surf...you and Mr. surf hang in there. Training a doctor to listen to a layman is like training a cat. First, you have to train them to get over themselves. Only then can you get them to listen.

FWIW, in my case, I did not notice any effects from Orgovyx until about a month in. That's when hot flashes and joint stiffness/pain kicked in. Mild to wild and then backing off the more I got used to it. Something to keep in mind. Although I'm still dealing with various mets and PSMA uptake, my lymph system showed clear on my last scan. Previous scan showed PSMA uptake from chest to pelvis on too many nodes to count, so there's that. ADT did its job there as I'm sure it will for hubby. Radiation will handle the rest. Stay strong and give the docs hell. You guys got this! 👍👍👍

@surftohealth88 That is just plain wrong! Your husband’s case SCREAMED aggressive and they didn’t take out at least one node bilaterally??
WTF are these people thinking??
No wonder you’re angry - so far this entire ‘team’ is definitely NOT the starting line up.
This became a self taught, full time job for you when it did not have to be. And unfortunately it’s only going to get worse for everyone, since mediocrity is the order of the day in most hospitals in this country.
Well, Surf, stay sharp, stay involved and keep on them. “ The squeaky wheel gets all the grease” is the best motto when dealing with dumbasses who just don’t get it - or just don’t care. Best,
Phil