My husband is 56 years old. His PC is a gleason 9, he had RP on 3/16/20, SVI, 9/43 positive lymph nodes. PSA pre surgery was 5.3, 6 weeks after surgery 1.4 second one taken 10 days later was 1.7. Repeat bone scan and ct scan clear. Had Ga-PSMA scan in May at MSK. It showed only one lower para-aortic node ( .8 x .4 cm) suv 4.7 increasing from 3.7. Current treatment plan (recommended by MO and tumor board) is at least 2 years of ADT (Lupron injection) combined with Apalutamide. After three months on drug therapy treat pelvis bed and lymph nodes with radiation. Does this sound like the best plan? Given that just one node lit up hoping the proverbial horse might still be in the barn. So still hoping for a curative approach combined with a treatment. We are still waiting on results from genetic testing. Also a second question...wondering if PSA might not be a great indicator for him as it didn’t seem to match his aggressive cancer from the beginning. Knowing his PSA from diagnosis was not high would that effect PSMA scan results? Give us false hope? (Meaning much more cancer than showed up) However, he did emit some PSA as it did not go undetectable after RP. Any advice or recommendations would be greatly appreciated.
After RP had a PSA of 1.7. Went for a... - Advanced Prostate...
After RP had a PSA of 1.7. Went for a ga-PSMA scan wondering what’s next?
That sounds like a great plan! I hope they get the last of it - all you can do is try.
While genomic testing is worth doing, it usually shows nothing useful. IHC can show you how PSA-avid and PSMA-avid the metastases sampled are.
Thank you! We will ask about the IHC staining test. Appreciate hearing his treatment is a “great plan”. Just having a plan has helped the anxiety tremendously.
First things first. Wait for the 3 months PSA results due in 10 days. Depending on the rate of rise schedule RT as further down the road as sensible. 5-6 months between RP and RT is not the best that it can happen to him. He can start ADT promptly. His plan is too SoC, while his PSA numbers aren't. This makes me very sceptical.
Thank you for your reply. I so appreciate everyone willing to share their experience!
My info has it that the average LN excision in the US is bellow 10. Here in Europe, it is almost double i.e. less than 20. Climbing to the whereabouts of 30 has it classified as "extended" and only very experienced and talented surgeons (experience by itself is not enough) can undertake such a task. Up until now I had heard of someone with 35 LN removed. Your husband's 43 is an all-time high for me. I am sure this didn't happen by seer luck. So, his drs saw he was a special case and the 9 LN found affected proved them right.
And after all this, the proposed treatment is a photo-copy of the 6 years old guidelines.
I am an engineer and can parallel the above as a bolt in inches and a metric nut. They just don't fit together.
Thank you for replying... we are quite new to all this information and new to diagnosis so not sure I am following you exactly. We understood his cancer to be aggressive (Gleason 9, grade 5 stage IV t3b,n1,ma) and thinking his treatment plan to be equally aggressive. The doctors felt he needed to be systemically treated (ADT plus Apalutamide) because they believe there is cancer we don’t see even on the PSMA scan and because he was low volume chose Apalutamide over other options. Also because we do see a node on the scan also treat locally/ regionally. One without the other would seem like we would be missing treating some of the cancer. Prior to surgery my husband had the opportunity to be part of a phase 3 clinical trial where one arm received ADT and Apalutamide for 6mos then RP, followed by 6 more months of drug therapy. With the other arm given ADT and a placebo. He chose to not do the trial because we still hoped for surgery to be a curative treatment. Ironically he is virtually at the same spot if he would have done the trial. So I don’t think it is the SOC from 6 years ago. But certainly feel like we have only scraped the surface on all the information available and we so very much appreciate all of the experience and wisdom you all offer on this site. If you would elaborate on your thinking I would so appreciate it.
Your husband is not an ordinary case. I am a GS9-pT3b and walked into surgery with PSA 8.6 which was regarded low for my stage. You can find many cases here with pre-surgery PSA of 10-20 and post-surgery 0.5 -1.0 designated as failed. Compare these numbers with your husband's. He didn't just failed RP, he failed BIG. Sorry for being so bold but wanted to pass the message loudly. He needs a more personalized treatment, not kicking the can down the road. I don't know what this may be, I can only sense the incompatibility. Sorry again for my boldness. Best of luck to you both.
Thank you... “bold”is very much appreciated! I understand now where you are coming from, his low PSA vs his aggressive cancer. I have asked this question to just about every one we have come in contact with. The best we have received so far is “PSA may not be a great indicator for him”. I will continue to pursue from this aspect. Tall Allen suggested ICH to test the tumor to see if it is “PSA avid”... we will pursue this as well. Thank you for taking the time to reply.
Two roads to follow. 1--radiation trail, 2 chemo trail. We all have this decision to make and later we will wonder if we chose the right way. I chose chemo after prostatectomy and so far so good. Not good candidate for radiation according to the drs I have seen.
Similar journey for my husband. PSA 19 before rp done 3/31/20. Gleason 9, t3b, post was 4.8! Had psma scan thank God only shows pelvic lymph node. Started lupron and zytiga today. Probably going to get radiation dont know when. Good luck to us!
Yes... good luck to you and your husband. Did he have any lymph nodes taken during surgery?
If 43 lymph nodes have been removed during surgery there are not much left to radiate. Also, the recommended radiation area for ROs covers only part of the area where lymph nodes are often detected with a PSMA PET/CT. Therefore I would not radiate the pelvis bed but just the visible lymph node with SBRT radiation to avoid the side effects of pelvis area radiation which may be futile in this case.
Here is a study looking at the results of two years of ADT after surgery:ncbi.nlm.nih.gov/pmc/articl...
I think, because there are no bone mets, Apalutamide is not required. You could save the cost for that if this is an issue for you.
Yes it is an excellent plan indeed. Just treating the one identified node with targeted radiation (SBRT) and not doing the entire pelvic lymph node field would likely be a mistake. Treating identified oligometastatic pelvic nodes identified on PSMA PET scans without treating the whole field has a failure (new mets appearing elsewhere) in approximately 2/3 of patients. So you proposed plan has much better prospects for better outcome.
Thank you for your reply. We are early on in his PC diagnosis and sometimes feel like we are already throwing darts at a moving target. Thankful that he is still healthy and able to hopefully tolerate this aggressive plan. Best of luck to you. Appreciate all of you here sharing your wisdom.
Hi - I think your Tx plan is spot on and you must have a very good medical team. When you say radiation “to prostate bed and lymph nodes” I take that to mean whole pelvic, correct?
Can't treat what we can't see
Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow 
Progressed to bones...advice welcome!
The shadows of my spine...
