I’m on here for my husband as some of you may know.
RP was july 2020. 3+4=7 psa 11.4.
Age 53.
No further treatment and psa post op was 0.03
Pathology report showed EPE.
Fast forward 18 months to 2022 when psa began to rise-
Jan 0.05, Feb 0.07, March 0.09, April 0.11
I know all the ……….it’s still classed undetectable and I know it’s not considered advanced yet but it will be that’s why we insisted on monthly bloods soon as first rise started.
I read everything you guys write every day and as a very successful retailer I must admit some of the info is hard to understand but I do try and will continue to gain knowledge.
Surgeon referred us to Prof Brian ONeill radiation oncologist at Mater private hospital Dublin, his plan within the next 2 wks is to start Dave on 33 radiation sessions, daily tablet bilacutamide for 6 months & one single injection which is called PROST on the written note which I assume is prostvac.
Bone scan, CT Pet scan clear and just waiting to do MRI, soon as that’s done treatment will begin,
Dave is just incredible to so many and to just be Debbie Downer for a minute I knew I’d be staying on this site long term when surgeon phoned me moments after surgery & mentioned EPE.
So I want to thank the guys who have allowed me stay here, helped make our decisions, made me think outside soc, made me laugh & made me cry.
One guy I must mention who became my friend that I miss GREATJOHN.
I’m in it for the long haul guys and need you.
Advice & guidance will be greatly accepted along the way. ☘️
Thanks a bunch
Vic
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dublin1717
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Thanks treedown You must be coming up to your next 6 month check of your psa or have you done it? How are you doing and do you have many side effects to the radiation you received?
I will take a test in late May early June for my June MO visit. I ended Lupron last Sept and Abi in Oct. I am doing well, thanks for asking.Of course every ache and pain I feel I attribute to the C or the R in my mind. My MO said if the pain remains in one spot for more than a week to contact him. Haven't needed to yet.
Have to agree with you about Great John. Never met him face to face, but knew him here for years. We (at least most of us) are going down the same trip with humps and bumps and a final down hill slide we just can't stop. With the labs you have, the cancer is just reminding you it is still there. Mine did that for about 3 years before it kicked up again. Zapped it back down. Back it came again. Working with Xofigo now and into my 6th year with aPca. G-9/10, stage 4, grade 5 and still here. Miss my "walks in the garden while the dew is still on the roses" with Great John. He fought a good fight and with Richards and Sparky's help kept positive till the end was knocking at his door.
Sorry you have to be here, but glad we can help any little bit we can. Feel free to lean on anyone of us who can prop you up through the tough times.
PSA up 90% last month and 288% this month.... yep, climbing fast again...Other than that my last blood test results were the best in a couple of years, go figure.
Hi Dublin 1717. I'm in Cork. I'm sorry your dad's psa is rising. Can you look into lutetium 177? They offer it in Charitée university Berlin. You could try to contact a specialist called Vincent Khoo in the Marsden also for a consultation regarding your dad's suitability for this. There is a radioactive isotope called actinium 225 being trialled in Heidelburg university that looks very promising. This is for the future but I personally research everything everywhere. I really stalk and contact everyone everywhere to find out what is available, where and how can we access it. There are then overseas clinics offering combination therapies.... If you want to pm me i'll talk you through all i've learned about. I've personally contacted some who've done incredibly with treatments from them. Best of luck.
I had the same thing happen after my RP. What you have is something called Persistent PSA. Take a look at that term and read up on it. It took me a year here in the United States to figure out where my PSA rise came from. Scans didn't show anything. Yet I've virtually started at a barely detectable PSA rate after surgery to almost 2 in a little over a year. I was part of the United States trial of PSMA GA68 scans. The metastasis was found in my lungs only. No other metastasis in my body or lymph nodes just my lungs. When that was "found"treatments for began immediately. The breakdown of my PSA is in my history. Hopefully this might help? Best to you both on this journey..
We are not waiting for psa to get any higher, my personal opinion is that by the time cancer is detected on a scan it has likely already went to the next spot. Hoping your psa remains as low as it is and thank you for the message.,I’ll keep u posted.
Good morning, I have similar situation 2.5 years undetectable after surgery in October 2019, 3+4, + margins(3+3 at margin) & EPE. I've been doing PSA tests every 3-months and met w/ Radiation Oncologist after surgery. The earlier the better on hitting it with radiation (prostate bed/lymph nodes) ealy salvage radiation is comperable to adjuvant radiation. Something may show now on a PMSA pet, but why wait? Early salvage has 70% cure rate.
Yes I have to agree. When are you starting radiation. Did you have a psma yet? What is your currrnt psa? Assuming this will be your route too. Thank you for the reply.
I have not started radiation as it is still undetectable PSA <0.01 - now 2.5 years since removal, I did have a PSMA Pet that showed nothing they only did it because of an increase in PSA which turned out to be lab error.
Pet/ct & bone scans clear which we expected. Being told psma f-18 which is available in Dublin will show nothing, what should I do Justfor, insist on it or travel abroad for a more sensitive one???
Going back two years ago, at your first post, I gave you my estimates on the detection rate at some PSA values and an undisclosed PSADT. Hate to brag now, but my PSADT estimate didn't prove unrealistic.
PSA note: In my case the 0.1 to 0.15 PSA range has been bumpy. From 0.08 I went to 0.11 -0.15 and then started declining down to 0.12 where from it started climbing again. Don't expect miracles but the range between 0.1 and 0.2 is a notorious one.
PSMA PET/CT: There are two 18F radio tracers approved in Europe (only one in North America). Either of them is more sensitive than the 68Ga one at low PSAs. The best for spotting a recurrence after RP is PSMA-1007 although there is hype that it provides false positives. It doesn't mask the bladder, a frequent place for recurrence. Your best expectation will be to detect nothing.
Take what is available in Dublin 2-4 weeks after starting Bicalutamide as the latter is purported to augment PSMA excretion.
If memory serves, no lymph node were excised during RP. Correct?
This makes LN recurrence your no1 suspect. Your best shot is to travel to The Netherlands and spend 4k Euros for a very sensitive MRI using Fe nanoparticles. We have the example of a gentleman from London who took the two and on PSMA the LN showed up, but not conclusively, when on nanoMRI (one name by which is known) it was doubtless. His PSA at the time was 0.15, if not mistaken.
Geez I looked at the picture and all I though about was "Paddy's Pig".....Irish through and through...... Pretend you're in a pub...and that will keep you both in the fighting mood to kill those bloody fookers......God Bless....
It seems to me he's doing pretty good. I would not rush into radio but try the least invasive and simplest method for controlling PSA such as Bicalutamide and see if it stabilises his PSA and brings down his testosterone, 😎 DD.
This is what currently I am doing and its a bit more important a consideration for Dublin's husband as he is much younger then I. This, for the incidence of secondary cancers due to the radiation a decade down the line is not zero. I haven't found an exact number for this as usually ROs evade a straight answer quoting generalities like "very low" or "insignificant" etc. For a person like me in his early 70s a decade later brings him on the peak of the life expectancy curve, consequently, something else will knock his door earlier. But for someone in his early 50s?
On another note, Bicalutamide does not bring down Testosterone, that's the good thing about it. On the contrary, it raises tT by blocking its consumption making the biological control loop to try to overcome the blockage by flooding more of it. My tT increased some 30-50% after I started Bicalutamide and this at a very low quantity.
It is the highest and a bit controversial projection that I have run across. Highest, as only single digit % numbers I had in the back of my head. Controversial, as probabilities get higher with time, so I anticipated an "after" instead of a "within". Anyway, I took good notice of it. The fact that your RO gave you a specific reply should be counted as a plus sign for him/her.
Thanks for always responding. I’m finding today a rough day.
Dave just will not step outside the box.
Glad I have the diversion of reading everything you guys post, of which half goes over my head (When you all get scientific) but it takes me away from my own problems.
Regarding salvage radiation, the top Radiation Oncologists know, earlier the better but the definition of "early" may vary. If I recall, "undetectable" is considered 0.04 or lower. So really really early could be two successive PSA levels > 0.04. I believe biochemical recurrence is considered at 0.2. So my guess is early salvage RT these days may be somewhere between 0.05-0.2? (Doing it below 0.05 would then be termed ADJUVANT RT and that is not recommended as people at that level could have already been cured.) Below 0.5 the PSMA PET Scan and Nano MRI have a high chance of not detecting all possible targets. Supposedly, the best is to use both.
I'm not there yet, but if it were me I would get Early SBRT Salvage Therapy, preferably the latest realtime MRI Guided (known as Viewray MRIdian, or in Europe, Unity Elekta may be more widely available) combined with 6-12 months ADT before there is anything on the scans to target, probably as soon as PSA > 0.1 which is right where you are at. I think the low sensitivity of the scans at <= 0.2 PSA makes them possibly pointless, except to make the medical facility a lot of money, but I'm no Radiotherapy Oncologist. This is based on reading and consulting with two Radiotherapy Oncologists (one of them Dr. Amar Kishan at UCLA considered a world expert on the matter.) Maybe there's a chance the recurrence is truly spot localized and the scan finds it even with PSA <= 2. Just some ideas to look into.
You may want to use this nomogram at Sloan Kettering, to get a general idea on how the outlook might differ depending on your values and using different values for the second question (your most recent PSA). But I think the thing this nomogram points out also is it was developed before anyone was considering salvage RT at a PSA lower than 0.2, hence one of the questions is how long did it take to get to a 0.2? You can't answer that until you get to a 0.2!! It's still interesting to plug in your numbers. Although for people my age in their mid 50's, 7-year outcome isn't that impressive when you should otherwise have in the ballpark of 25 years of life left.
Hi I'm Debbie from England.. My husband had an RP in April 2020(the start of lockdown)(he was 61) ..psa was 12.5 .Gleason 3+4..Psa started to climb slowly about s year ago..We were advised to wait until it was visible on PSMA scanner (had to go to Windsor as scan not available in our area.).1 met on pelvis and micro one on lower rib.psa 0.5...Felt like the end of the world.. anyway met great MO who is doing SABR to 2 areas in a about 4 weeks followed by ADT thereafter and careful monitoring/scans..to keep track of exactly what's going on....Both a bit overwhelmed but trying to be positive..I wish you both luck.D.x
Just caught up on your posts Debbie. Dave starting 33 sessions of full pelvic Rad next wk, plus lupron and bicalutamide. For 6 months. I can hardly believe it’s happening but it is. Psa now at 0.15
Now I need to work on what our guys on here suggest he should take of supplements.
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