I keep going back and forth between various treatment options.
In the next week or so, I’m having appointments with a surgeon (tomorrow) and a radiation oncologist (February 6). Basic story: cancer on left side of prostate and in my pelvic lymph nodes (“hyper avid lymph node in the left external iliac chain measuring 1.6 x 1.1 cm with an SUV max of 23.6”). Gleason 9 in lymph node, 7 in prostate. Blah, blah, blah.
Currently on Orgovyx .
I’m feeling pressured into surgery - they’re using terms like “a potential cure,” which raises irrational hopes. But then they’ll probably have to do radiation anyway.
I’m terrified about side effects (especially incontinence) associated with surgery. It come down to quality of life questions. I also don’t want to inflict this recovery on my wife, or grown daughter. My mom died of lung cancer (over 1 1/2 painful years) and I don’t want that for my loved ones. I also don’t want to do one treatment, followed by another.
But enough about my fears.
What I’d like to hear is stories about successful treatment of Gleason 9 PC with either choice. I know everyone’s cancer experiences are different, but just trying to get some perspective.
I’d also like some suggestions about what to ask the surgeon and the radiation oncologist.
Thanks in advance.
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Jpburns
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Why don't you have medical oncologist? "When all you have is a hammer, pretty soon everything begins to look like a nail", what? Once cancer has metastasized, it's now a "system-wide" biochemical problem - the purview of the MO. Fortunately you have caught it early! Stats are good! And there may be a role for surgery or radiation - but the MO will provide a big-picture context.
BTW, Orgovyx aka Relugolix is the best, in my opinion.
Consider radiation to the prostate plus whole pelvis radiation with a boost to the positive pelvic glands and 3 years ADT plus 2 years of abiraterone, based in the results of the Stampede trial.
I think that if there is any chance of cure it is with whole pelvic radiation.
I've found that many surgeons are "hot dogs" who believe they can cure anything. Radiation after surgery has much worse side effects than radiation done as primary therapy. There are many pelvic lymph nodes where cancer may be hiding, and I doubt that even the most adept surgeon can find them. OTOH, radiation kills the cancer in ALL the pelvic lymph nodes. Plus, they boost the dose to the prostate and the known cancerous lymph nodes.
The only question I'd have is what hormone therapy and for what duration is necessary along with the radiation. The SOC is two years of abiraterone and 3 years of ADT. The following clinical trial uses Decipher scores to help decide. Consider enrolling:
humm, I have seen 11 urologist in last nine years, small practices to nationally recognized centers including abroad. Not one was a "hot dog". I have consulted seven medical radiation oncologist in this time, also including nationally recognized centers and abroad - one I can see calling a "hot dog" - Scholtz (I remain grateful I did not follow his recommendations).
The urologists I've seen are all surgeons. Nothing to do with luck. Your blatant biased against surgeons is not of service to all. As you seem to have a prominent voice here, perhaps my surgical successes will offer balance based on actual experiences and outcomes.
I've met many more surgeons than you have, and have no bias. Most men diagnosed with PCa never get beyond the first surgeon they meet with, and "just cut it out" is a common first response when one hears the word "cancer." I encourage patients to talk to a variety of doctors, and to take their time. The initial panic reaction often passes.
well, by now with all your experience, one would think you would have a fine list or surgeons. And it is quite a leap to say 'most men'. You are biased - just own it!
I do know some very good surgeons. I have worked with scores of patients, have you? Your attempt to put me into your little imaginary box has no basis in fact, as most of your comments I've seen you post here. Idk why you are trolling me, but it is common among men who feel inadequate for some reason.
oh my, I am responding to you; you have stated multiple derogatory judgements of me and my treatment paths. And now you diagnose me as feeling inadequate and attempting to put you into my little imaginary box. I can assure you I am most confident, no feelings of inadequacy, and certainly not intimidated by your tactics. Sadly it seems we cannot have a discussion of my diagnostic and treatment paths - you certainly have shown. no curiosity nor asked any questions on my posts - you simply are judgmental and negative. In my advocacy efforts I will push back when it seems necessary - as I feel it is with some of your comments and statements; certainly not all as I do agree with other comments of yours.
Guys, guys… I think our time can be spent better than sniping at one another. Take a breath. Back off. If you can’t say something useful, just step away from the computer.
Please don't let anyone pressure you into anything. Not any surgeon, no one. And this comes from a guy who had a very successful RP well over five years ago. Just take your time and make your own best decision when you're ready.
Glad you brought that up, I finally put some information in my profile. I was G 3+4 and all indications were that it was confined to prostate. My uPSA's have been <.006 for well over five years. Hence, it looks good but I still have PSA anxiety every time before I get my results.
My husband has a similar situation; Gleason 9 with spread to a pelvic lymph node. Surgeon at Sloan Kettering kept telling him he was an excellent candidate for surgery. Then we met with medical and radiation oncologist and both of them asked the same question. Can the doctor get to the pelvic lymph node? When I asked the MO what he thought, he said if it already spread to the lymph node and he can’t potentially remove everything, then surgery is NOT the way to go. We got on a 3 way call with surgeon and MO, and the surgeon then finally admitted that he could not get the node, and said, but you could do the radiation and ADT after so I said why would you do both? I told him that makes no sense, to which he could not answer. In my opinion, surgeons need to keep business going since a lot of men are opting for radiation and hormone therapy. Radiation has gotten a lot better and more precise now with 3D imaging.
If you can come into terms with the idea that there is NO single treatment and forget for a 64 y,o, GS 9, then you may get (much later) the rewarding feeling of a best under the circumstances decision. I was in your position 5 years ago 69 y.o. GS 8.
Hi JP, I’m almost 3 years into my G9 Journey. Please see my Bio. Off all treatment since June 2023. We are in wait and see mode as T recovers. The ADT was tough at time but I am happy with the treatment path I chose.
I was a Gleason 9, did surgery and so far (after 3.5 years) still undetectable BUT I took an unconventional route by combining surgery with 6 months of “intensive” ADT AND I did not have prior detection in my lymph node. And If it is in one lymph node, it is most likely in others.
Bottom line. In your situation, I would forget surgery. I would do whole pelvic radiation plus brachy plus 2-3 years ADT. It has already fled the barn. I would want to hit it hard. Not an easy course but I would tough it out. And hopefully after the course of ADT potentially be cured.
I was just a 4+3, but mine indeed spread to the para-aortic lymph nodes. Sharing my successful treatment of G 7 with RP, salvage RT and salvage lymph node surgery, and no ADT (which was and remains a major objective of mine). To your question of what to ask surgeons and radiation oncologists - my selection of RP was based on investigative findings with two mpMRIs. It was clear to the multi-disciplinary docs I consulted with that tumor location did not provide sufficient margins for successful radiation nor focal treatment of the prostate gland without likely serious side effects. All concurred RP was my best chance to minimize side effects and reduce tumor burden - my primary objective. If I could do it all over today, I would have one of the currently available PSMA PETS and better Ferrotran non particle MRI and then taking of common iliac nodes before the RP, with an immediate frozen biopsy. If cancer was found, as it was in my case, the lymph node dissection would reach as far as possible; mine went to the para-aortic nodes. (This was the procedure in my ePLND). Again, I did not want the side effects of ADT and chemo, and I did not have confidence full pelvic radiation would achieve my objective of tumor burden removal with minimal side effects. There are others in this group who speak harshly against surgery and very favorably of full pelvic radiation, and ADT, so your should get a good cross section of opinions; and hopefully experiences. I hope this helps. All the best!
Have you reviewed all the You Tube Videos from the Prostate Cancer Research Institute with Dr. Schultz? Excellent, excellent info, wish I would of known about the videos before my Radical Prosectomy Surgery 5 1/2 years ago. Had Bio chemical re occurrence 3 years after surgery, so got radiation and hormone treatment, finished 1 year ago, so far, undectable.
Everyone responds differently, but for me, so far, all the side affects were very manageable, just gritted my teeth and got thru them.
Hot flashes were the main annoyance.
I had Gleason of 9, not clear margins after surgery, family history in 3 out of 4 male relatives.
Review, research all the info you can, Pray or meditate on it, and make your best decision.
Thinking and Praying for positive outcomes for you!
(the info below indicates that RP is a bad path for high risk of recurrence guys)
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
I decided to skip surgery and go directly to radiation (proton) for my G4+5, I finished treatment on 8-2017. My last psa was undetectable. My age now, 82.
My husband went into surgery Gleason 7 came out Gleason 9. He did 6 months of ADT and radiation to prostate after surgery. He should have consulted MO and done the ADT longer. It has metastasized to lymph nodes and bones. Right now he is on triplet therapy and doing well. Incontinence is a very real possibility with surgery. My husband has dealt with it four 4 years. He wears depends 24/7. He would never had surgery if he knew this would happen. Good luck to you!
I also am a G 9. I felt that pressure also. It sucks! TAKE YOUR TIME AND LEARN. I chose whole pelvic radiation and prostate, 44 treatments. I am on month 17 of lupron. PSA 3 months after treatments is .01
Did you have an MRI prior to your initial prostate biopsy? If so, did the MRI show a suspicion for a malignant lymph node. and then , along with your prostate, the suspicious lymph node was also biopsied? I ask, because this is the 1st time I can recall that a man here has mentioned a Gleason score for a lymph node? Your prostate biopsy was Gleason 7. Did they also have a PSMA PET along with the prostate biopsy, and the lymph node was biopsied as a result of a suspicious lymph node? My perception has been that an avid lymph node would would be considered metastatic PCa, and no biopsy of the node is done? Hoping to learn something from you on this !
Also, while the cancerous lymph node reduces the probability of "cure", there is definitely the possibility of cure! Or at least long-term period of stability with perhaps some ADT...after initial whole pelvic RT as others have discussed. with surgery, you would probably want to add pelvic RT.
It sucks, there is no question about that...and I see you have already had your share of medical problems!!!
MRI: There is an 8 mm short axis left external iliac node - PI-RADS 5 - Very High
Biopsy: 14 samples - 12 cancerous -2 were Gleason 9 (not iliac, which was not sampled. I was confused with PSMA, seen below. )
PSMA: There is intense avidity involving the posterior prostate corresponding to the nodules identified on prior prostate MRI measuring up to an SUVof 11.2.
There is a hyper avid lymph node in the left external iliac chain measuring 1.6 x 1.1 cm with an SUV max of 23.6.
Reread TA and Ricky posts. We have all been down this road. Your goals are really very simple. Learn as much as you can. After that make a decision. DO NOT LOOK BACK! You need to keep moving forward. Prior decisions can not be undone.
I would echo Tango65's "Consider radiation to the prostate plus whole pelvis radiation with a boost to the positive pelvic glands and 3 years ADT..."
Surgery would get the prostate and the one node. But a PSMA PET scan might detect cancer in more nodes, and it is likely there is as yet undetectable cancer cells in still more nodes. So surgery alone is not the answer, and can have ED and urinary side effects.
You have been on the ADT Orovix. Consider "doublet therapy" with the addition of an androgen receptor inhibitor (ARI), either Erleada (apalutamide) or Xtandi (enzalutamide). The even better "triplet" therapy adds a chemo agent, but is not effective if you have been on ADT for more than a couple of months, or suitable if not very fit.
In 2021, I had IMRT to prostate, which recurred and spread to a lymph node. Then had IMRT to whole pelvis with boost to that node. About 3 years too late, I have just now begun ADT with Orgovix, plus going to add an ARI for "doublet". Neither the radiation nor the Orgovix has caused any side effects. At age 81 now, I had ED and bladder urgency before the cancer.
Mine is stage 4 and I got my prostate removed anyway. No incontinence but it can happen. there are other potential side effects too. IMHO, make your choice based on what gives you the best longterm chance for survival and based none at all on your fears and misapprehensions.
My G9 PSA 20.6 perennial invasion prostate cancer was diagnosed in 2015.Saw the surgeon who did he might be able to get it all but couldn't do surgery if I had radiation first. Next week met with the Chief of Radiation Oncology and she told me, in my specific situation, that the results long term for either choice was the same. She then added that I would need radiation after surgery and then said "Bullshit, I have seen him do surgery after radiation!". She didn't hesitate in her saying these.
jo-h-n probably has it right. Pick out of a hat.. it seems like that, but look at the posts here and see what's been reported as a success and what guys regret the treatment they did.
I'm G10, I rang the bell, had the slides read three times. Local path gave it a 4-5 (9), MSK path gave it 5-4 (9) and Dr. Epstein at John Hopkins gave it 5-5, ring the bell for 10!
I pretty much made up my own treatment plan after reading a lot of papers, talking a bit to TA, looking at what others had done and their results and shopping hospitals/radiation-centers/and MD's. I had a mix - local urologist to give me the Lupron shots. Radiation oncologist at a local hospital university cancer center (brand new facility when I was there with the newest and brightest..) and then a very well regarded medical oncologist/professor/researcher at a NY university hospital.
I drove the bus, with directions from my MO. The plan was simple, ADT for 8 weeks before radiation started, then whole pelvic radiation followed by a prostate boost (done on the latest machine, with real-time imaging, 45 treatments, 83Gy.) And a total of 24 months of ADT.
I stayed on ADT for a total of 18 months (a study showed 18 "wasn't inferior to 24 months). During that time my PSA was unmeasurable. I also was on finasteride for hot flashes (which halves the PSA). Testosterone was almost unreadable.
Came off ADT and after about 3 months, T started rising, as did PSA - to around 0.11. Came off the finasteride and the PSA did what I expected - doubled to around 0.2 to 0.22. It's been at 0.2+/- for more than 24 months (I think close to 30 months) except the last read went down to 0.15, I think a result of going on Repatha for hyperlipidemia (my MO has the same read on it.. and again recent papers have shown some link between high cholesterol and PCa. What the link is hasn't been determined.)
So there'ya go. When I was diagnosed there was no sign of spread except a "possible perineural invasion" - this was on only one biopsy read, and is I believe legal language (ass saving) meaning we don't want to be sued if it's spread. A more upsetting term would be "probable perineurial invasion" - a big difference between possible and probable. And the reads from Johns Hopkins and MSK never mentioned it.
Recent papers have demonstrated a close relationship to how soon the patient's PSA drops after radiation (mine did immediately) and how long it stays at a very low level (mine has been since radiation) with freedom from recurrences. IE - long remissions (sometimes called "cure" but I never say I'm cured...) Those studies show my progress to be excellent, with an actual chance of very long-term remission (probably outliving me..)
So there'ya go. You asked about successful treatments with G9, I feel mine was with G10.
Take that for whatever value it has - everyone is different. I'm just telling you my story.
interesting reading responses to your post, Jp. I’m supposed to decide in 10 days what I’m going to do. My PCa has escaped to one nearby lymph node, so surgery is not a sure thing. There’s nothing routine about surgery no matter what the docs say. (Just ask our defense secretary.) I’m preparing myself to accept IMRT along with ADT, but with the ADT much curtailed (6 mos total). Doubt my MO will go for that. But thought of the SEs that medical castration invites is not appealing. It scares the hell out of me as well. I will likely be pondering the whole affair up to the point when they push the button.
This is all great information, y’all. Sorry I haven’t thanked you all individually. Just a little … distracted. Y’know. But know that I really appreciate everyone and their willingness to share their experiences.
Btw, I am now heavily leaning towards radiation over surgery, unless the radiation oncologist scares me off. Meet with him next Tuesday.
Ask him to quote figures regarding second cancer occurrences 10 and 15 years post irradiation. At 64 you will walk along these timelines. Don't take as an answer vague evasive responses like "very low" or "in the xx years of my practice haven't seen one".
We visited the radiation oncologist today at Winship. After lots of research and lots of coin-flipping (joking on this part…) I’ve decided to go with radiation (photon, not proton).
Get my CT-SIM on the 19th, and start 5 weeks of treatments on March 4th.
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