prostrate cancer growth

[despurato]

Everywhere I read it seems everyone says PC is slow growing so you can take time to decide treatment. Mine was discovered through annual psa testing with standard bloodwork. I went from 2.4 to 7.6 in 12 months. I decided on RP after biopsy and PMSA scan which showed it contained with seminal vesicles invasion. That was in June 2023. After pathology report and decipher test I ended up a G9 and .94 decipher. First psa came back .34 so straight to ADT and am 6 away from finishing 37 EBRT treatments. I guess my question is. How did I end up like this in such a short timeframe? Hoping for NED after all this but I sure don’t feel real warm and fuzzy about it at this point.

[mrscruffy]

Not all versions are slow growing, I went from RP in June of 2016 to metastatic in July. ADT slowed growth so I am good now

[despurato in reply to mrscruffy]

What length of ADT and what kind? I’m on Orgovyx for six months and have 53 days left. Hoping that’s all.

[mrscruffy in reply to despurato]

Lupron/Zytiga for 7 years and 8 months. Just added Lynparza to the mix because I am BRCA2 positive

[Derf4223]

Please put your case details and age etc in your HU bio.

As for PCA, it comes in 2 flavors -- slow indolent and metastatic. The latter is very dangerous since it all depends on where the mets occur. Brain, lungs, liver, colon are not good at all. Spine is also not good but not as fast growing.

[despurato in reply to Derf4223]

I just updated BIO. According to PMSA Mets were in pelvic floor. I am also being treated for non muscle invasive bladder cancer which they don’t seem to worried about. The big fish is the pC cancer. After posting this I am wondering should I let a medical oncologist take over the PC treatment or just stick with the urologist for bladder treatments.

[Derf4223 in reply to despurato]

From what you added to your HU bio, no one here can give you any directional advice. GL

[Tall_Allen]

When you were diagnosed as high risk, and with SVI, you should have been told that you have an aggressive kind of PCa that probably will not be cured by RP.

[Radars in reply to Tall_Allen]

I was dx in 2014 t3b no mo seminal vessicles involved, finished treatment in 2016 rt/ht,half way through earth oncologist said he was going for cure,I am on 6monthly psa checks, 0.04 at the moment. Is mine aggressive.

[MSTI in reply to Radars]

Diagnosed 2015, t3b, 7 limph nodes negative, seminal vessicles invaded, PNI vast, no mets, gleason 4+3.RP, adjuvant RT the same year. BCR started on 2020, doubling time four years. Asked MO if my slow DT is frequent case and he sad that slow DT is more rule than exception in his practice.

Watching and waiting....

[Radars in reply to MSTI]

just have to keep going and hope for the best, it's right what they say everyone is different in how they respond to treatment, my testosterone has never recovered and now I have severe osteoporosis, I have had 1 infusion of zoledronic acid infusion, one thing leads to another

[Chillichikn]

hey despurato, really sorry to hear about this. I guess everybody’s experience is different. Personally, I think there are a lot of variables to an individual’s experience and journey with cancer; any type of cancer. It’s just horrible, we all respond and react to treatments differently. Some cancers are just way more aggressively than others and also, it depends where they are; some of the locations are just so much more susceptible to those aggressive cancers than other areas as well. Again mate, I’m really sorry you’re going through this. This is a space where we are all all here for you ok 👍

[Tigger2022]

You sound a lot like my husband, although he was Gleason 8. But his Decipher was 0.94, and had SVI and a PSA detectable post-op. He started ADT meds and did radiation, but he is on Orgovyx along with Abiraterone & Prednisone for two years. With your PC, 6 months of Orgovyx alone is a big risk — from my reading here, that’s not likely to be enough, I’m sorry to say. Do you have a medical oncologist? Please don’t let your urologist decide your treatment with a G9.

[Grandpa4]

I would say the at you prostate cancer does not produce much PSA. That is similar to mine. Mine was diagnosed with PSA of only 2.9. Your doubling time tells you that your doubling time is 9 months or so (guess). That is pretty slow. PSA is just not a good screening test.

[AlvinSD]

I’d definitely get a Medical Oncologist that focuses on prostate and GU cancers on your team. You need more than just a Urologist managing this with a GS9 and bladder cancer.

[SteveTheJ]

You obviously have not read "everywhere". Last man I heard say his doctor told him prostate cancer is slow-growing (I believe Dave was in his 70s) died from it in 2022. Make sound decisions based on the best medical evidence you can find and give yourself the best chance for longterm survival.

[NanoMRI]

How do all of us end up like this? I came to learn this disease is treated as a chronic illness, that the rising annual death rate is considered acceptable, as is the number of men on ADT. Despite my years of self-directed PSA and DRE screening in my 40’s and 50’s, I missed out on early detection; the case for most of us. My RP nadir was 0.050. With the guidelines for ‘biochemical recurrence' set at 0.2 post RP, time slipped by before I also tried salvage RT, 'early' at 0.10, shooting blind, hoping my cancer was contained within the pelvic bed. It was not. Six years back one version of “SOC” that was offered to me was ADT, chemo, the STEAMPEDE trial. I said no. I remain grateful I am still able to put off ADT.

[Cooolone]

Slow growing doesn't mean non-spreading...

SVI is NOT contained!

I had all the adverse features, but still was called 'Intermediate' risk... ECE, SVI, PNI, IDC-p... But nodes clean, even through w recurrences (or persistence), chemo, etc.

7.6 is still not HIGH... But it is what it is. You can ready whatever you want about everyone else everywhere else... But YOU and YOUR Cancer is not theirs... We are all DIFFERENT and so is our Cancer. However similar it may be, it is still distinctly different from the guy next to you. Keep that in mind, always!

Best Regards

[despurato]

I think after all the replies here I might need to be looking for a urologist oncologist. I am starting my last week of radiation therapy tomorrow and really respect my radiation oncologist. Maybe she can offer me some direction. Even after a year of dealing with this it is still confusing on what to do. I have never cared much for my urology practice but they are pretty much the only show in town. I have a follow up on the 13th and I’m sure it will be to schedule a cystoscope and start back with the BCG if it is working and the prostrate will be a waiting game now to see if it will remain NED after stopping ADT. Of course I’m just speculating.

[Pattycakepgh in reply to despurato]

My sweetheart's cancer was diagnosed by a urologist after he experienced heavy bleeding when urinating. After the Uro Dr did a cystoscopy and found cancer, which was biopsied he was diagnosed with Gleason 9 prostate cancer, the Uro Dr referred him to a oncologic radiologist. We opted for a second opinion at a major cancer center here, and decided to have the oncologist who specialized in prostate cancer take over as managing his treatment plan. We kept the Urologist who worked as part of the team and we needed to see them several times to assist with urinary issues that developed on and off. But the medical oncologist was who we saw for to implement needed treatments - which was Eligard injections, Zytiga medication and then chemo when needed. I would encourage you to see a medical oncologist who will work with your Urologist when needed.

[NanoMRI in reply to despurato]

My direction after each of my four treatments first relied upon the usPSA nadir that was achieved. Before and after each treatment I gave careful thought to what my next new direction would be whether my hoped for nadir of <0.010 (no ADT) was realized, or not. My treatments to date include RP (nadir 0.050), salvage RT (nadir 0.075) and salvage lymph node surgery (nadir <0.010). As planned, for after my ePLND, with <0.010 nadir realized, I began one year only on bicalutamide. My next direction was frequent testing until if and when my usPSA rose to 0.03 - which it did. Next was imaging and continued frequent testing to if and when 0.050 is realized; then I will take next new direction. (I have been holding 0.03X range for past two years). I hope this helps. All the best!

[turkeyjoe1]

Get a medical oncologist. Don't play with fire being a Gleason 9. Drive if you have to. I went to a small town urologist and checked with a big town cancer hospital. Back up what they say.

[tsim]

Were you working with a urologist initially?

[despurato in reply to tsim]

Yes I have been with the same urologist for everything so far. But I’m thinking maybe my radiation oncologist might can help me with a recommendation and a referral.

[tsim in reply to despurato]

I figured as much. You need to put the uro on the back burner, you can return if you ever have a plumbing problem. You have prostate cancer, you should find the best radiologic and/or medical oncologist possible. I realize this is water under the bridge, but in my opinion mainly because of your high risk grade and Gleason 9 you should have never been advised to have an RP

[Stevecavill]

I would say it’s likely it didn’t happen quickly., it was detected late. What was your psa before the reading of 2.4?

[despurato in reply to Stevecavill]

So I went back on my portal and in 2021 it was 1.8 so two years later it 2.4. I really don’t know if that would trigger an alarm.

[j-o-h-n]

Greetings, Why don't you post your location and ask our member if they could recommend a good Medical Oncologist in your area.............. No cost - it's free...

youtube.com/watch?v=aelpqWE...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n

[despurato in reply to j-o-h-n]

Thanks for the tune. Exactly where my username came from. I just couldn’t spell it right to have it. I’m actually about 15 miles South of Myrtle Beach SC in a little coastal town called Murrells Inlet. I did find one at MUSC which is 2 hours from me. But if anyone has any suggestions I would love to hear them.

[j-o-h-n in reply to despurato]

Start a new post with your question(s).....regarding a M.O. (on dry land that is), Quant town.... Now, if you were born and raised in the south I think you might enjoy this:

What's the different between a Yankee and a damned Yankee?

A Yankee visits,,,,,, a Damned Yankee stays.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[despurato in reply to j-o-h-n]

Oh totally understand. Plenty of those damned Yankees here. But I don’t blame them one bit. Don’t know why it took so long. We had this little piece of paradise to ourselves for most of my life. I will try a new post and see what happens.

[CAMPSOUPS in reply to j-o-h-n]

On one of my visits to Florida I saw a bumper sticker on a young girls car:

"When I get old I'm going to move North and drive slow"

[despurato in reply to CAMPSOUPS]

Yeah for sure they drive a little more aggressively than I’m used to. And always in a hurry. I don’t get it. Just leave a little sooner.

[j-o-h-n in reply to CAMPSOUPS]

Spot on..........

Good Luck, Good Health and Good Humor.

j-o-h-n

[GumpaD28 in reply to j-o-h-n]

Like the old saying j-o-h-n, Some bring joy by coming here. Others bring joy by leaving. ✌

[j-o-h-n in reply to GumpaD28]

I like that.... thanks......... I'll mention that to my ex-wife..........

Good Luck, Good Health and Good Humor.

j-o-h-n

[GumpaD28 in reply to j-o-h-n]

I had a wife one time also. But then her old man came and got her. Thank God. Hehe

[j-o-h-n in reply to GumpaD28]

Competition!!!.......... I love it.......I can handle the pun’-ishment.......

Good Luck, Good Health and Good Humor.

j-o-h-n

[GumpaD28 in reply to j-o-h-n]

Not at all brother. You love humor and so do I. Just figured throw 1 or 2 quips that you can use down the road. I'll do that now and again. Life without humor or music would be pretty dull. Only way I keep what's left of my sanity ✌

[j-o-h-n in reply to GumpaD28]

john: Gumpa, This is the fourth time we've had complains about you acting strange this week, do you know what that means?

Gumpa: It's Wednesday?

Good Luck, Good Health and Good Humor.

j-o-h-n

[GumpaD28 in reply to j-o-h-n]

Today is Wednesday. Let em complain we all need to vent. Hey anyways my daughter had a baby boy yesterday. Glad it wasn't a full grown boy...✌

[j-o-h-n in reply to GumpaD28]

Yep, Hump day....

Baby!!! If so, congrats to your daughter and to her beau.......Gramps, give out cigars with a blue wrapper........for doing absolutely nothing. But may he have your humor and spirit and live till he's 101.....

Good Luck, Good Health and Good Humor.

j-o-h-n

[GumpaD28 in reply to j-o-h-n]

I hope he does and does have to go thru what we are. And Thank you ✌

[despurato in reply to j-o-h-n]

Thanks my friend. I got off my keister and got myself a highly recommended MO. Next Tuesday first appointment.

[j-o-h-n in reply to despurato]

Way to go.... despurato.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[despurato]

Thanks to this site I have an appointment with a MO that specializes in GU at Hollings Cancer Center in Charleston SC at Medical University Of South Carolina next week the day after radiation ends! Probably where I should’ve been through the whole journey.