Newly diagnosed Gleason 9

[OppositePlatypus9910]

Hi all,

I recently had my prostate taken out and got upgraded to Gleason 9, T3b, seminal vessel and extra prosthetic extension with positive margins but no lymph nodes. I am 56, very fit, and will get my first post operative PSA in September. My pre-op was 9.5.

I know a lot of people on this forum have a lot more to worry about, but I was hoping some of you may guide me in what to expect further and how to mitigate this disease. I keep reading that my prognosis is positive and treatable but not curable? I have come to expect a longer road, but is this a lifelong road? Is BCR a forgone conclusion? Also would like to know my options on further treatment … Adjuvant radiation with ADT has been mentioned.

Thank you in advance for any words of wisdom and similar experiences you may have had.

[street-air]

while the positive margins are not great news I do not believe it is incurable while it remains not metastatic. Hell, sometimes early metastatic has seen durable remission for as long as counts as functionally cured, like ten years. Have they discussed adt and radiation to prostate bed given the margin situation? If after such a salvage, your post radiation psa goes to quiescent and near zero you could consider, two years later, coming off adt to see if its all been knocked out. Its certainly possible after all what would be the point of salvage if there was no possibility of getting it all.

[OppositePlatypus9910 in reply to street-air]

Interesting, so it so possible that ADT and Adjuvant radiation to the prostate bed could possibly knock it out? Or are you suggesting ADT with future salvage? Thanks.

[street-air in reply to OppositePlatypus9910]

they probably want to wait for 6 week psa but with positive margins it will likely not be undetectable at that point you should he discussing salvage options. You can call that adjuvant if you like but its salvage as the margin status tells you it is not really an attempt to add a second treatment on top of rp with no extra evidence. And the logical salvage is adt then after a short delay prostate bed radiation and continue adt for a year at least. I am out of my depth here but they might want to discuss hitting more than the bed (lymphs). Since there is a positive margin your surgeon should he handing you over to oncology and radiology already and not sitting on his hands hoping for a 6 week undetectable reading..

[OppositePlatypus9910 in reply to street-air]

Got it. My surgeon is uro oncologist and he told me he would get me in touch with radiology. I see him again right after my fist PSA in the first week of Sept. My RALP was July 26, but they insist I need to heal for 3-4 months first.

[Elbers123]

too early to throw in the towel. I am far from the most versed here but I know in the last few years an embark study helped a lot of guys in your spot. Plus the ssport study where they hit the bed and the nodes and initiate adt early has improved results for many. Find up to date team at a major cancer center. Keep asking this group for options. You’re not in this alone.

[OppositePlatypus9910 in reply to Elbers123]

Thank you I will. I expect them to start me on ADT asap

[Tall_Allen]

Usually, patients can wait 3 months for the first PSA test, but your adverse pathology dictates adjuvant radiation. You may want to start ADT for about 7 months before radiation to give tissues time to heal.

prostatecancer.news/2021/10...

[OppositePlatypus9910 in reply to Tall_Allen]

Thank you. My first PSA test will be in 5.5 weeks. I see the surgeon exactly 6 weeks after RALP, so I feel they have moved fast enough. I do feel they could start me on ADT immediately so I will ask when I see the surgeon. I do have a question for you Tall_Allen, as you seem to be extremely knowledgable on this subject.. Assuming I do the ADT and subsequent adjuvant radiation, is there really a possibility that it can recurr subsequently? Say, In a few years? I am hoping for a cure, but am not sure if there is in my case. Thank you in advance..

[Tall_Allen in reply to OppositePlatypus9910]

The goal is cure. The Tilki study showed that 10-year all cause mortality was only 14% for those who had adjuvant radiation, but 28% for those who waited for PSA before radiation.

[OppositePlatypus9910 in reply to Tall_Allen]

Thank you! This helps. In my case it seems the odds are even better as I had no lymph node involvement. I will certainly bring this up with my doctor

[NanoMRI]

Won't claim wisdom but certainly words of experience and lessons. For so many of us this is a long haul endeavor. Making it more difficult is all the disparities we face.

Nearly ten years ago I was diagnosed at an otherwise healthy, fit and active 57. I chose to rely on <0.010 as best indicator post RP and dispel the use of 'undetectable', and 0.1 and 0.2 for recurrence. Post RP this disease does not come back, it was there lurking. Even if your first PSA is <0.010, IMO bimonthly testing for a few years to not give this best time and obscurity.

As to no lymph node involvement, the cancer pathway is not straight forward, so this does mean it is not in other lymph nodes. IMO if your PSA is above 0.01 I would be looking to have PSMA imaging and liquid blood biopsy testing.

Based on PSA half-life of 2-3 days, you could test in 20-30ish days post RP (you did not give us an RP date). My first result was 0.050 and we knew cancer remained.

My intent since my RP nearly nine years ago is to, if it comes to it, to defer ADT and the likelihood of CR for as long as possible. I am post RP, salvage RT and salvage extended pelvic lymph node surgery.

Hope this helps. All the best!

[OppositePlatypus9910 in reply to NanoMRI]

Thank you. My RP date was 7/26/2024

[Justfor_]

Only 13 years older when I had my RP in 2019. The rest more or less the same. Take a look at my bio for an off the SoC cookbook course.

[Rickmartin1948]

There is definitelly alot you can do curable or not, but you definitelly want to see an oncologist before you move on. In my experience they see the bigger picture, and there is so much you can do that you need to know which are your options before moving on.

Nowadays curable or not is an estimate since current science still does not have a full grasp on PC, but you have to get ready for the fight, keep very fit, jog resistance whatever you do, tennis is good, and watch your weight if you start ADT, better right off the bat. Good luck and have faith in God and in yourself.

Keep an eye on the doctors since each specialist has its own agenda and they can be limited in scope. If you find a doc that can say " I don't know" don's let him go!!

[j-o-h-n]

Review old posts from our members.....(H.U. History)

Please update your bio - info is voluntary.

Good Luck, Good Health and Good Humor.

j-o-h-n

[tn12]

How are you doing? Your story is very similar to my husband's. What was your post RP PSA?