I Just updated my profile and am G-9 with PNI, IDC and lymphovascular invasion. Check 2 mutation as well but Decipher at .41.
RP Dr V Patel march 2020 (T3b, negative margins and negative lymph nodes) and PSA undetectable until Sept 2023. Started at 0.021 and now Feb 22nd 2024 at 0.052. Seeing Dr Grass at Moffitt and Dr SANTOSH YAJNIK at Medical College of WI who just came over from Univ of Chicago. Based on quick rise and pathology Dr Yajnik recommends PSMA F18 scan and MRI for baseline only since there is a 95% chance nothing will show and start next week with ADT (6 months) and follow up with radiation 39 sessions in March/April.
He prefers to be this aggressive because he feels I am still in cure stage. Waiting on RO from Moffitt for opinion.
Is he being too aggressive or???
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Peppertree602
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There are others more knowledgeable on this forum, but to me it sounds very conservative....I would have thought with Gleason 9 that they would be recommending longer ADT.
Thank you for reply and link. Any advantages to certain equipment or methods or? View Ray is now operational I heard and it seems Moffitt has one. Your thoughts on getting radiation at Moffitt by Dr George Grass or in WI at Medical College of WI. We spend 85% of our time in Sarasota and Moffitt is 90 minute drive vs flying back to Milwaukee (we have home there as well) and doing 8 weeks there. How critical is the skill level of RO in mapping?
Similar case here, yet, I followed the off beaten path of self directed adaptive Bicalutamide. Later I found out that Moffitt, under the lead of Dr Gatenby, is the only institution that has first hand experience on adaptive PCa treatments.
In my experiences less aggressive gives this beast time and obscurity. Aggressive in my case was to get baseline imaging with Professor Barentsz, Radbond UMC, at usPSA 0.10 with Ga68 and Ferrotran nanoMRI. The nanoMRI identified suspicious pelvic nodes. My next aggressive move, to defer/delay ADT as long as possible, was salvage extended pelvic lymph node dissection; which confirmed mets at paraaortic nodes and yielded a nadir of <0.010 . That was six years ago. Seen slow rise in usPSA, last two years holding 0.03X range, no ADT. In 2022 when my usPSA crept into 0.03X I had both Ga68 and Pylarify PSMAs. They were clear, as mostly expected, and IMO valuable as I remain focused on not giving this beast time and obscurity. Hope this helps. All the best!
I have read some of your other posts with questions about testing, when to treat, and the various relies. Several fine docs I have consulted with, including MOs, were 'surprised' with the volume of cancer removed by (uncommon) my salvage extended pelvic lymph node surgery at 0.11. I do ask how many of their patients have had salvage ePLND - the answer is always none. Also, I test as often as monthly, and find this frequency useful. My focus is to not let this beast get out ahead of me. Six years ago I realized <0.010 after the ePLND, no ADT. Last week, 'still just' 0.03X range. So in hindsight, I did not have to test over the past six years. Maybe just once, say last week, and there I would be 0.03X. Some would say 'undetectable', some would say noise. Maybe - ? But then I can say with my imaging done in 2022, at 0.03X, I am very certain this best is not overtaking me and I can continue to safely delay ADT, and thereby likely push out CR.
I had my ePLND procedure, with frozen section biopsy of common iliacs first to determine the extent of the lymph node removal, at OLV Hospital, Aalst Belgium, with Professor Alex Mottrie. A long way from my base in Texas, but then the Ferrotran nanoMRI was done at Radboud UMC, Nijmegen, Netherlands. (At that time I had a part time residence in France, so not so far ;). I consulted with a number of docs and centers in the US, including 'top tier'. All recommended ADT and some chemo too, and were not favorable towards the ePLND. With suspicious pelvic nodes and as best as could be determined NED in bones and organs, I went for full removal of remaining identified tumor burdens. As for approval, my US insurance at that time would have covered the procedure in the US, but not abroad. Both the imaging and ePLND were self-pay, but as I learned while residing in England and France, health care costs are considerably lower there. My imaging and surgery costs were less than round trip first class airfare from Houston to London or Paris. I am very familiar with the criticisms of my third treatment selection, but here I am, six years next week, holding usPSA 0.03X last two years, and believing I still do not need ADT/chemo. Am I right in my choices - I am comfortable saying I do not know but I am grateful for my otherwise excellent health and fitness. All the best to all of us fighting this beast!
Thanks for this info. Sites like this can give us much help, but ultimately we are each responsible for finding our own way through this minefield. I am glad to hear of your success in finding your way and will hope it continues for you. To be in your position at this point in time without ever having had ADT or chemo seems pretty remarkable.
Ya, seems remarkable. I am certainly grateful. I said no to ADT/chemo at the time of my salvage RT, seven years ago, usPSA 0.11, because I first wanted evidence of disease in bones and or organs. (I can discuss this was a wrong decision). After the unsuccessful salvage RT I still wanted evidence of disease in bones/organs so I traveled to Europe for Ga68 combined with nanoMRI. As there was no evidence I again said no to ADT/chemo. It occurs to me than men begin ADT/chemo with NED in bones/organs, and quite possibly cancer remains confined to pelvic region. I do understand the opinions that delaying ADT/chemo does not delay CR, and may in fact trigger it sooner. But, I have chosen my path and remain confident and grateful, for as you say, the position I am in today. All the best to all of us fighting this beast!
Some what similar hx. Robotic RP and pelvic lymph node dissection 7/2019 (only two lymph nodes removed). Gleason 9 (4+5) Mixed acinar with extensive ductal features. T3a N0MO with 2 ECE no SV involvement. Margins negative. Color genetic testing + for NBN gene mutation only. Decipher score .82 PSA <.1 for 9 mos, .1 for 30 mos. PSA jumped to .21 on 12/3/21. PSA unchange at .21 Feb 22 , then decreased to .18 3/28/22 and .15 5/18/22. Gallium 68 PSMA scan done 5/18/22 was negative. Met with R.O. one week after scan and he was “o.k.” with holding off on salvage radiation as long as psa stable/dropping. We did discuss the spport trial. 7/22/22 PSA increased to .17. Started salvage radiation 8/17/22 to prostate bed and pelvic bed and received hypofractioned dosing for 20 sessions. Began lupron (4mo) 2 days prior to start of salvage radiation. Along with lupron taking casodex 50mg/day and avodart (dustasteride) .5mg/day. Took casodex for 4 mos, may extend dustasteride for ? 2 years. So far PSA remains (<.02) and testosterone has been recovered for almost one year.
I have a call today with Dr Kilari my onco there and I will ask. Previous RO Dr Lawton retired and she was the sister of a good friend and I will reach out to her
My urologist who is a personal friend recommended the BioProtect but it seems Dr Yajnik at Froedtert prefers not to do it was a bit confused and will ask my Moffitt RO Dr Grass about it.
SpaceOAR I thought was if you still had a prostate or?
My logic was to have as much radiation in the shortest number of sessions. Fewer times for errand radiation to the wrong spot. Used to fly at higher altitudes and around nuke weapons. Always wondered about getting zapped with some radiation. Just sharing my experiences as we all know our cancers are our own.
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