Why don’t they remove the prostate with margins, seminal vessels etc
Why do Medical Ocologist insist on leaving a tumor burdened prostate intact and some don’t even recommend debulking or radiation?
Isn’t that the only way to try to go for a cure?
Regardless of bone Mets
any studies on this?
Dear DeLeMere. They try . This is a convoluted not fully understood disease still . There is No cure ,we are told for #4 .. some have survived decades ..The big money for a Uro is in surgery .. And often they fail to get it all . Imho ..In my case I was 53 yrs old and non -op . I had No distant tumors TG, but pc tumors blocking bladder and urethra. “ The horse was out of the barn” ..Idid imrt ,Lupron and another like zytiga . Debulking is a myth . Especially once metastatic ,meaning out of the prostate . Personally I think way too many poor chaps get the surgery then find it’s out and still need to do chemo or radiation . Then the surgery was a waste . My opinion only . I don’t feel I missed anything . So even with out surgery I went under the radar 7 yrs . I did an orchiectomy in 2017 dropping the lupron shots . Most all of my depletion issues now are from no Testostetone . I’m now 61.. Thanks for advocating ! ✌️
advocating? Or stirring the pot? Lmao
I do think orchiectomy is better than the damage these hormone injections and pills do.
However, the adrenal glands still produce so it’s constant monitoring for the same end.
Do you take anything for the adrenal glands producing? If you do not mind me asking
I like your sense of humor,! By advocating I was thinking you’re searching to help another ? I did take Tak-700 a now defunct test adt drug . It halted the T from the adrenals . I stopped it six months ago . After more than seven years on . 😎✌️
Yes I am so called researching this most destructive cancer, Sevens years that’s excellent, maybe I’m onto something with orchiectomy, a better option I think, than the hormones that seem to do a ton of damage
I made that decision back then . Shots for life or an orch . So far so good but with this terminal dx there are no promises made …The longer that I can stay clear the closer to a said inevitable return .. one point , is to live in the moment . Good luck in researching this ! ✌️
Lu hows it going after ending the TAK? All good?
Thanks for asking ..It’s going good so far . I was weening off of it slowly my last year on it . No t for seven yrs . That won’t return without injecting. ? Im on no pharma .. first time since dx. Hoping I’m not poking the devil pc himself . That a hole! 🤨
Thats great maybe your 7 years as opposed to my 2 will be magic. Not sure what my next test will bring but I may hit 2 based on my last. But, been off meds for over a year so no idea what to expect, seems like I will know pretty soon though. Wishing your wildests dreams comes true.
I’m very sorry ,I did not mean to brag . son of a gun ….still tree not down . Pc is all some type of twisted crapshoot ..my dearly departed mom told me upon dx “ you’re paying for your sins now “ She would know . Irish catholic she was…my wildest dream is for us to both to enjoy everyday under the sun . This pc tick up can drive one bonkers . Throw some more spaghetti at it . Someone said “ we’re all in the gutter, but some of us are looking at the stars” that’s me , my head in the sand…I’m hoping and praying that you will stop this MF again . Stay strong dude! 💪
I am so not looking forward to another session under the knife! i'll stick with the pills and shots for a while, and see how I'm fairing later on.
Hi DeLeMere. I had an orchiectomy in 2021. My T wandered around a bit in the teens then dropped to below 5, where it has been ever since. Took nothing for adrenal T and it does not seem to be an issue.
Here’s one for the ball less .Of which I am one also . Here is to living unique with 3T …Good luck Sir! 👏👏👏😂
I agree with you. Too many men have the surgery then radiation and ADT.Then the are found to have local mets followed by further mets.
Prostate Cancer is still a bit of a craps game. Each facility/doctor has their own preference on treatments and when.
Advances are happening often and offer hope but this Cancer is insidious unlike a few others like the Testicular Cancer I had when 27. Made it 40 years until the Prostate attacked.
Much to learn and many to treat.
I’m sorry Teacherdude! That’s a rough road … I chopped the boys in 2017 at 55. These darned hormonally fed #4 ‘s never really go away completely do they? They’re always awaiting to eat us up in the end .. mine has been hidden for seven years now . But we know there is No cure ..Like Olivia Newton John ,her BC hid for 22 yrs then came back in force . Poor lady . She did much for BC . Pc is like a crap shoot or like pinning the tail on the donkey ,blindfolded. The docs throw spaghetti against the wall to see what sticks . If anyone had figured out this insidious disease we wouldn’t have 17000 members here searching for Hope! ✌️
Sadly, it doesn't work at all like you imagine. Think of metastases like morels sprouting under an oak tree. They are only the most visible part of an extensive network. The only time that debulking the prostate with radiation (they do treat the seminal vesicles and a margin around the prostate) slows down the spreading, but does not cure, is when less then 4 metastases are visible on a bone scan/CT. That's because some of the early spread is from cells in the prostate, but then mets spread to other metastases.
No one is sure if there is any benefit to zapping bone metastases if there are only a few of them. Again, few believe that will cure the patient, but there is a hope it may slow down the spread if combined with systemic therapy. If the bone metastases are in safe places, why not?
so with less than 3 Mets radiation is better than radical prostatectomy? Radiation is better than removing the mothership of tumor burden?
Radiation has been tested specifically for that purpose, which you can read about here:
prostatecancer.news/2018/09...
There is a clinical trial to see if prostatectomy can do as good a job as radiation. My guess is that probably it can, but the side effects may be more onerous. Meanwhile, radiation is the standard of care for that situation. It can be done in just 5 treatments (SBRT).
We appreciate the explanations
Would you share the clinical trial?
It's at MD Anderson if you're interested.
I was diagnosed in 2014 with PSA of 5.2, Gleason 7 (4+3) in 6 of 12 samples, no metastases found. I had Brachy and EBRT and PSA was undetectable until 2019. With PSA of 4, 1 metastasis was found on my left ilium (pelvis). 1 heavy hit of EBRT and PSA went down to 0.2 until 2021, when it rose to 0.8. Bone/CT scan found 1 metastasis on L1 (spine). 6 months of Orgovyx and 5 EBRT treatments and my PSA has been <0.1 for 15 months now. All areas treated with radiation have remained clear.
That is a condensed version of my journey. We'll see what the future holds.
Good Luck to you DeLeMere
My husband had spot radiation to his spine met. He had multiple bone mets at diagnosis. Hips, spine, pelvic bone... No radiation or surgery then. Immediate ADT and taxotere. PSA has continued to decline very slowly in the last 5 years since diagnosis. 677 to 25 after 6 rounds chemo plus ADT at start...then slow decline since. He went on Zytiga + Pred after chemo and kept ADT. Has been on that for 5 years. Currently PSA 1.4- has never risen except maybe a .1 or so rise once in a while but right back to declining.
Scans in 2019 and 2020 showed no evidence of active disease. However- his yearly scan in Dec of 2021 showed a previous spine met brighter so he had a once and done very strong zap of radiation to that bone. Luckily met was at the spinous process so safe to give the very high dose. Even radiation tech was confused at dose of zap and had to call radiation oncologist to confirm. It worked to make met less bright on scan March 2022. He'll have new scans March 2023.
I agree that only one zap is necessary if it is strong enough
I was diagnosed with 10 out of 10 positive cores on biopsy, then PSMA PET scan showing some spread to pelvic lymph nodes and possibly perineural invasion on one side. I went in expecting radical prostatectomy followed by radiation, and was surprised that they recommended ADT and EBRT only. Their rationale was largely due to side effects -- they said why do surgery and endure its side effects, then radiation and another set of side effects? So far I'm 3 months into ADT (Eligard and abiraterone), then will start RT at 6 months.
hi.
this was one off my questions.
there is a trial I wanted to go on.
my cancer nurse and ocologist both reluctant and put me of and pushed me to start chemo.
You may be able join trial.....
its called ATLANTA.
its for metastatic prostate cancer
basically you get the standard care for metastatic (ADT, CHEMO) but......
Roughly speaking, the trial either cuts out prostate, freezes, cooks, or has some radioactive seeds injected into prostate.
my understanding is, it removes the control center , the trigger, the communication, the link to the escaped and metastases........
dont think they think it's cure, but my thinking is,. It's more curative and proactive than sitting looking and feeling my right breast growing and seeinghow much my nuts have shrunk....
This is only my interpretation of what I've looked at and sure there's other members with better ways of interpreting the ATLANTA trial.
My hope was to get mine stabbed and froze....
I beleive with my situation it had the least side effects, good chance to disrupt even slow the disease.
theres criteria to be met, but if your early diagnosis, you've not had chemo yet and your up for it, ask your care providers....
I was initially expecting ADT + surgery + add on radiation for my GS9. I was really surprised when the urologist said “no surgery for you” after letting me know about the lymph node mets and the one small pelvic bone met. I thought (considering my age and great health otherwise) they would want to remove the prostate. The urologist did a very poor job explaining why (well, really, that’s being kind…he really didn’t explain it at all) on our brief phone call.
It wasn’t until I went to see the radiation oncologist that I got a good explanation and he reviewed my scans and discussed it with me that I understood.
He basically said, even if they would do surgery I’d have to deal with all those side effects (which would likely be worse because they would have to take more out to try and get clean margins) plus (due to the high Gleason score), I’d need ADT and radiation anyway. So, we discussed the STAMPEDE trial and (based on feedback from my second opinions as well as the great people here), we decided on triplet therapy then later radiation to the prostate.
It was a shock when my head was already spinning due to the cancer diagnosis to hear no surgery but I feel much better about it now. Also, looking back, I really don’t trust the urologists I was working with and (even if they would do surgery) I’d not have wanted them cutting on me anyway.
So, my last chemo is this Monday. I’m continuing on with my Eligard 3 month injections and darolutamide. I’ll be getting planning CT scans mid-November then radiation starts early December. He is definitely going to irradiate the prostate / SVs but may do some adjacent lymph nodes and the one bone met as well. We are going to discuss the final radiation plan after the CT scan.
Pls read my bio first. When DXed in 11/2017 my tumor was too big to taking it out. Started Lupron and chemo and tumor shrank. So we decided to taking it out to „reduce tumor load“. Later I did RT. As of Friday my PSA was undetectable under Lupron. Did the surgery help? I don’t know. But sitting here in good condition convinced me, that I did the right move.
I read it, may I ask, any lymph node or bone metastases when you were first diagnosed?
Only pelvic lymph nodes in 11/2017 until today.
I had my prostate and several nodes radiated or “debulked” back in 2014, shortly after I was dx with metastatic cancer that had spread to my bones in several areas of my body. It was done at the advice of an excellent radiology oncologist. It made sense not to leave the main tumor, after all they debulk the main tumor in so many other cancers.
A year or so later, when I became a patient of Snuffy Myers he told me it was one of the best things I could have done, eliminating the mother ship.
Ed
Hi read through these post, so may I ask, you did not have your prostate removed?
No, oncologist felt there was less risk using radiation, I had entire prostate radiated along with several affected nodes.
Ed
Is a very good question, and a lot of it comes down to personal preference... And many patients when diagnosed, hear they have cancer, want the most expedient method to remove it, and believe that is to CUT it out. And sometimes that is a decision that can have lasting consequence
Again, everyone is different, but I will relate my path, my decision and why I made it at the time.
We have all been at that place, newly diagnosed, flooded with the bombardment of emotions, stages of denial, thoughts of our frailty, what comes next, what choice is best, what to do, where to do it, who, how, what's gonna happen, how do I beat this thing, etc., etc. So my quick research as soon as I was diagnosed found that getting to a Major Cancer Center and one rated in Excellence was the best chance for the best results (cure). And I was fortunate to be very near one fo the top rated PCa facilities in the U.S., so off I went... But I wasn't sure what path would best work for me. So I set up consultations with multiple oncologist there. I read and read, NCCN, got a few books, I dove deep in the weeds and wanted to be armed with some knowledge and information when I sat with these learned doctors who would have a lot to do with my future (health) soon. All my previous tests and scans were forwarded. Original Urologist who suggested surgery as the best option but was cavalier when questioned about side effects wasn' too happy when informed I was moving on.
So anyways, upon reaching my COE, I began to meet with my first Urological Oncology Surgeon, great guy, great discussion but I already began to understand that my diagnosis was a bit more than something so simple my original doctor had made the impression of. Although fairly low PSA, I had basically all of the adverse features that there are, including Intraductal... ECE, SVI, PNI, G4+3 in 90% of the core sample in 6 out of 12. But no spread, local or otherwise.
I met with surgeon #1 but his focus was not "just" on PCa. So I respectfully requested to know how many RP he performed and how often. He was honest and accepted my hesitation to accept him because I discussed if I was going to have surgery, I wanted someone who "only" performed RP. He set me up with consult #3 and happened to be the Chief of Urological Surgery (Oncology). In between, I met with a Top Radiation oncologist there as well. But he was as bad as my first urologist... Very pushy, very cavalier... His big sell was Fire, Ice, then Steel... Promoted 2-3 years of ADT during and post treatment, with a quick look at my files and a DRE, said I was T3b (more on that later)... But honestly, he didn't have a good answer for the question of surgery post radiation and was too pushy for me. He scared the hell out of me too with the ADT. Was too quick and seemed uninterested to take the time to explain or answer questions
In the mean time, I began some self discovery from information I was finding regarding staging, intermediate oadbanced diagnosis. The long term results, ie, OS and also side effects from various therapies. So I also made some appointments with Alternative Medicine Oncologist and a Sex Health Oncologist to discuss diet, lifestyle and also how to mitigate side effects (sexual, continence) from any of those possible treatments.
I was fast forming my own conclusions and what I wanted...
I then met #3 and can tell you, it was a different experience than what I had so far. First thing was we met and sat, and after a brief introduction of each other, he began to recite and review my tests, scans, diagnosis and then asked after seeing all and who I have seen, what he might be able to do for me otherwise? I was very impressed to say the least, here was a guy that knew all my data/stuff without opening a folder or looking at a computer screen. He also wasn't pushing anything, we discussed surgery and MY case and how it applied to me. He was honest and forthcoming, noting that with my diagnosis, regardless of therapy chosen, my case predicted with high degree that recurrence wasn't an "if" but a "when"...
I also discussed with him why surgery was difficult post radiation and he explained it in detail...
Around that time I had used nomograms and found other data that lent to the "debulking" method via surgery. Also the difference between surgery and radiation as first line therapy and recurrence, etc. Data (then) showed that radiation was favored in the first 10years and surgery slightly edge radiation post 10yrs. I was 54 at the time and looking long term, the debulking resonated with what I was looking for... And at some moment while sitting with #3, the light went off, I decided that surgery would be my path! It was like a gorilla got knocked off my shoulders! I felt I had been set free! I walked out of his office almost skipping!!!
Unfortunately, I was persistent PSA post RP, my PCa was more developed than scans or images could show, +margins in pathology, etc. So went on to pretty much immediate Salvage RT with ADT... But that said, I will attest to my satisfaction regardless of the PCa because the SKILL of the team, THE SKILL of my surgeon, allowed me to recover pretty much to 98% of my pre treatment function, both sexual and continence. Same goes for post RT, post Chemo... So there's that. But back to the original RO, who wasn't my RO for Salvage Therapy by the way. He was probably correct in his diagnosis, and correct too that in hindsight, would have offered me a better chance at cure by today's statistics. But we just didn't hit it off, I don't don't get good vibes from him at all. So it is what it is... But the T3b was spot on, lol!
So anyways, we will never know what path might have worked best, other than the one I had taken. Do I have regret? Nope, not one! I have faith in my team and believe they are in my corner. I will continue though to Wade deeply into the weeds and keep my team on their toes, challenging them with cutting edge data and questions as to why this or that, etc., and why not this or that... Like BAT and others.
How'd it go... The movie... "Life is like a box of chocolates, you never know what you're gonna get" ... And so is cancer and it's treatment!
Bottom line from this long winded post is... Educate yourself, advocate for your care, and don't look back! Just make the decision that makes you happy and keep walking head held high, don't over think it or try to second guess, it does no good and doesn't change things. Live life and love all you can, don't waste time dwelling in the darkness of what if. And always remember to breathe!
So to answer your question, they DO remove the Prostate, even in the face of compelling data to the contrary. You just need to educate (yourself) and advocate for it.
Best Regards
Interesting discussion thanks for posting. 👍
Hi DeLeMere, I was diagnosed in 2014 as stage 4 with extensive bone mets. Went on ADT which shrunk my prostate and cleared it of cancer. I had it until the atrophy started to constrict my urinating so had a TURP (roto-rooter) and so what was left is now gone. But according to both DRE and CT, my prostate was completely clear of tumors for years before they took it out so I could pee.
So, that could be the reason. Also, my brother-in-law went the early intervention with surgery route and was miserable for about 10 years before he passed. I'm 8 years in and feel great now that I'm off all the drugs (my PSA was never low enough for an ADT vacation). PSA is rising and perhaps Pluvicto is in my future. So I think I got the better Quality of Life, even though we both got the Standard of Care.
I'm 73, living alone (well, I have rented a room so I have a housemate but I have to take care of the house). Which reminds me I have to get going, gotta skim coat the front steps on a nice sunny day so they're ready for ice and snow. And I have to get the new circuit to an outlet for the snowblower done, too. Yeah, stage 4 is a bitch, but I just don't have time for it!
f18 pms a pet/ct scan shows 2cm tumor in prostate with no Mets Witt nubequa without Lupron failing. May be castrate resistant as I been on l
Kidney Stones after ADT
Standard of Care for prostate cancer from one country to another 
Thanks to Prostate Cancer, I ________
PROSTATE CA : EXERCISE IS SUPER IMPORTANT 
