I got to lupron for about 4 months my Gleason score was 9 my PSA was 69s down to 2.75 now from the lupron injections should I consider getting my prostate removed would it help me long term I have two Mets in my lymph glands one of my 10th rib and one in my pelvis
Should I have prostate removed - Advanced Prostate...
Should I have prostate removed
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Startanew
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A recent trial showed that radiation of the prostate had no effect on survival in men like you who had 4 or more mets. I expect the same would be true for prostatectomy. Here are some other options:
pcnrv.blogspot.com/2017/06/...
And, while the effect on survival may be minimal, the side effects could be really bad.
In my case, the costs involved, the time and effort spent, the side effects and the opportunity cost of not moving to some other treatment are also factors. Therefore, trying to get the treatment right is of great importance.
I haven't discussed it with my oncologist but I'm with you if you take away the mothership maybe the satellites will fail afterwards or be more controllable
I agree with Nalakrats....take out the Mother Ship and the lymph nodes... I would get on zytiga and prednisone with your Lupron right away--before surgery
onclive.com/publications/on...
Here is what Dr Yu said in this article on OncLive
onclive.com/web-exclusives/...
"However], trials are ongoing, and some of them are also looking at eradicating the primary lesion of the prostate. Theoretically, there's a rationale for this, because the primary will shed lesions—micrometastases—that will set down and create more metastases. Ablating those [metastases] at a lower-volume disease state might be ideal. With that being said, there are studies reading out [that are evaluating] ablation of the primary prostate lesion of a patient with metastatic disease."
I was PT3A post robotic prostatectomy--7 months later I was stage 4, D2--1 lesion on my R clavicle--I got on Lupron, zytiga, and prednisone within 10 days.....a month later I had stereotactic radiation to my met when PSA was undetectable...f/u next month with RO...
You could qualify for stereotactic radiation clinical trial for oligometastatic disease--page 4 below:
cancer.gov/about-cancer/tre...
I believe when the opportunity presents itself, bludgeon the beast...hit it hard early..
Welcome to the forum by the way...Many knowledgeable posters----call me Fish....it is better than what others call me...LOL... remember, you are not alone...you feel overwhelmed.....ask questions --learn...and fight......
Best of luck....
Fish
others call me "Chum"? (no p)
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/21/2019 1:43 PM EST
I thought you called me Chump? Or was it Chummley from Tennessee Tuxedo??
Have a great day, my brother...
Fish
If you should find someone to do the surgery, you might also consider the possibility of it's adding urinary incontinence on top all future future systemic treatments and side effects that you may experience for the rest of your life as a Stage IV prostate cancer patient. It might happen. It might not. But it could.
Extremely good point, ctarleton. Surgery leads to definite urinary incontinence. The only question is for how long ?? For life ?? For a few months ??
Incontinence? I had my prostate removed along with 36 lymph nodes 7 years ago.
I had to wear a "pad" for 1-2 weeks (can't remember that far back) but do NOT suffer from incontinence. There are rare occasions when I have a real big laugh that I MIGHT accidentally squeeze out a few drops, but this happens very rarely to me (less than once a month- and is such a small amount that I don't need to change my under-ware).
I had a very experienced surgeon and was fortunate. Incontinence is a concern and may occur, but not in all cases, and not in mine.
You still HAD to wear a pad for 1-2 weeks ?? What is that if not incontinence ??
For most people, that 1-2 weeks is a minimum of 3 months. Often it is longer. With a few, it is semi-permanent.
Call it what you wish. Those were MY facts. You can call it incontinence. I call having to wear a pad to protect against a little leakage for a 2 week period an extremely minor inconvenience that I assume most people with PC would be more than willing to put up with. Truly- I am surprised at your response. Regardless- whatever decision you make, I wish you the best.
Soooo, you were INCONTINENT for two weeks. And, that is hardly the norm. The norm is more like three months. And, there are people who are incontinent for 6 months, a year and even more.
Please forgive the opening to my earlier response.
Yes- I guess I was incontinent for a week and maybe 2.
But-I never thought of having to wear a pad for a week or maybe 2 for a possible small amount of leakage as INCONTINENCE-
I just thought of it as a minor inconvenience that I had to deal with while I recovered from a 12 inch cut to my abdomen to remove not only my prostate but 36 lymph nodes to. I was at home lying on my couch for a week or 2,
and having to wear a pad during that period of time was no big deal. I never really considered myself to be incontinent.
But- I see that I was wrong.
Regardless- I was simply trying to provide the inquirer of my experience so that he could weigh it and realize that the "incontinence" doesn't ALWAYS have to last a long time nor be extensive. I chose to have my prostate removed when doing so was basically unheard of for someone with metastatic disease. I did so knowing I might end up being incontinent for a long period of time and possibly for life. But- I also knew that result wasn't true for everybody. I wanted to do everything I could to extend my life and felt that risk was worth taking. I am glad I had the surgery and wouldn't consider the incontinence I had to be anything but, at most a minor inconvenience. Of course, there are risks and for others, the result can be worse.
You are missing one thing----inadvertently, perhaps. That, your incontinence of 2 weeks is really not the average. When the incontinence stretches to 3/6/12 months or longer, it gets to be a real pain. You were fortunate that in your case the incontinence lasted only for a short while. Perhaps, a good surgeon. Perhaps, just good luck. Whatever. Something everyone undergoing RP should keep in mind. Apart from the other risks, of course. Over and out.
You have prostate cancer metastasis, meaning the it has left the prostate - so, RP is no longer curable. Have you read many here that had RP, then having PSA rise and go on ADT treatment?
You need to "do your own research", and then talk with Urologist, Oncologist and Radiologist, get all perspectives. For example, nuking the whole pelvic area, again, you have to know enough for yourself and no one else.
Whatever you choose, it's paramount that you write down concerns and options and have the doc respond.
tallguy2• in reply to
I agree. With Gleason 9 and mets already identified that train has left the station. Do some homework before getting the RP. Incontinence and impotence may or may not happen with the RP. I must say that, without knowledge of Mets I would have done proton therapy in 2012. Since startanew knows he has mets it’s likely time for ADT and abiraterone or possibly chemo; Radiation therapy is worth discussing, even though you are outside the “less than 4” criterion listed by knowledgeable others. Nail it aggressively with Gleason 9.
This is a review of this subject published in 2018:
ncbi.nlm.nih.gov/pmc/articl...
There is a clinical trial, perhaps you could qualify:
This is the prelimary report of one of the prospective trials (Lomp trial)
Is it possible for you to consult with a PC specialist? They really know best..
whatsinaname• in reply to
Some of them do, some of them don't. Sadly, its not a slam dunk 
• in reply towhatsinaname
I’m sure you’re right..just like anything, good ones ,bad ones and humans all. I had a good pc specialist , even he ,told me a few things wrong. Only time will tell . Mine told me that this type of remission that I’ve now been in for 3 and 1/2 years ,normally last about four years . And because I’m doing so well maybe we can extend it 5-6-? Who knows and by then some new things will,come up . Some probably deserve wealth and praise while others might deserve a caning.. Anyone with a degree in medicine deserves respect from me. I know little , it appears. You are right . All generalizations are wrong , including this one.
I went with RP and got rid of it and all my pain. Then ADT until after chemo. Mine was clear on all scans before surgery, but surgeon found a mess in side. Cleared out all he could but all hot margins and all veinous and neural bundles out of area were Gleason 9/10. Big spiderweb with no target for radiation without major damage. Hard fight now on Xtandi and in remission, so even when they say "what a mess, maybe 12-18 mo they can be way off. Take it out.
If you have metastasis, why undergo an invasive operation that will not cure you, which has a lot of side effects on it's own?
The docs all soft peddle that you are not unlikely to have to start wearing diapers. Go to a few support group meetings and talk face to face with 10 patients about how accurately they were informed about just this one side effect.
Localized treatment makes sense if you have metastasis near your spine or something critical, but you do not.
Excellent reply, cesanon. The URINARY INCONTINENCE suffered by men as a result of surgery is not a small matter.
therd is no studies that removing ones prostrate will give u all that much down the road just follow the docs advice
charlie
• in reply tocharlesmeyers1964
I tend to agree.
Hi and sorry you have to ask this question. My very best buddy is G9. He had a PSMA PET scan and cancer is in seminal vesicles and neck of bladder. Removal of prostate was not an option because cancer outside of capsule. Get knowledgeable as quickly as you are able to. Removal side effects can be devastating. Ask around. Trust your gut. All the very best to you and your loved ones.
I have not, until now, sided with Allen or Nal - but this time I go with Nal's advice. There is growing evidence that aggressive multi-mode treatment (as long as there are good surgical margins) can be effective. If you were to take such an approach you should consider having all pelvic lymph nodes removed before zapping the bone mets, pelvic area and prostate bed after RP. This is the path I have taken and my PSA is, at least for the moment, undetectable. All the very best with your treatment. I guess my key advice is to distill all the good advice you get here and then consult your medical team and take the final decision yourself. You have to become the most knowledgeable person about your disease. No doctor can do this for you. Cheers. Harry
• in reply toHarry_B
Great advice Harry to distill and consult your team .
I had gleason 9 with one lymph node involved and had the robotically assisted prostatectomy. I then did chemo with Lupron and still got bone met in one leg and one tumor near my bladder but I would still go the old fashioned way again with a bit of robotic help. Just be sure your surgeon is a specialist doing this procedure (like over 1500 prostatectomies under their belt). This can make the difference between incontinence, sexual function, etc. You should discuss what the strategy is before surgury so you know what may be the oucome.
I think the mother ship analogy is a good one. Removing one major source for cancer cells has to be helpful. The final outcome is pretty much a done deal but the pace and progression of the disease can be slowed.
Good health and peace to you.
In the UK they will not remove the prostate if it is advanced PCa even privately. I tried as I agree with Nalakrats about the mother ship theory.
I was possible NED after 10 initial chemo sessions but they would not remove it. 9 months later I had spinal compression multiple bone mets so where did they come from?
The answer is probably the lymph node system which seems to transport it like a secret army.
I am now on radium223 and I think next options will be act225 or lu177 but both seem to be private and expensive. Maybe full THC cannabis oil is my best option.
Good luck
Have you done genomic testing which I think should be done on all 9's? I had RP. I endorse the mother load theory. I wear pads but incontinence is minimal. ED is a problem but I'm alive. As others have said, you must seek out a doc that has done lots of surgeries.
Everybody is different. I have many, many mets, but my biopsy had 5 cancer free cores of 6 in the left side of my prostate. The cancer is almost entirely in the right half which is not enlarged. It's pretty obvious to me that removing my prostate would get rid of less than half of my cancer, while still being a shock to the system and introducing side effects.
At some point the mothership theory breaks down, and it doesn't help to worry about the prostate. For people like me, it's better to focus on a possible remission with all my parts intact 
What you say makes sense to me, tom67inMA. Cheers !!
It’s a tough decision for you are your Medical Oncologist. A real pro...... all of us would do something different. What ever decision you and your Pro come up with, then it is the right decision for you. Just make sure that your Pro is on top of his game,
Me? I’d radiated the prostate and then go to work on the problem..... systemic disease. And, that means, chemotherapy. Mop up with any of the new silver bullets if needed. I would rather attack than defend, but that is my mentality......
Gourd Dancer
• in reply to
I suppose HIFU might be an alternative to radiation.
henukit• in reply to
Hey, gourd_dancer, was your tumor unresectable, that's why you went with RT or any other reasons?
• in reply tohenukit
No, not at all henukit. My Urologist wanted to schedule me for surgery. My research results showed about 92% success with surgery or Brachytherapy. I also talked to about 50 people who had one or the other. I went to a Radiation Oncologist who at the time had done over 2500 procedures. He recommended that I also have a short course of external radiation. In this case, he recommended his Air Force best friend. So after the 118 Palladium Seeds, I had 25 sessions of IRMT. Wouldn’t you know that I feel in the 8% group. As my Medical Oncologist said later, “ it mattered not what primary treatment you had, it was too late. Micro-mestastatic cells had already escaped prior to primary diagnosis.
GD
rp is usually not a choice once you have mets
anecdotally,even with clear margins with rp done with no evidence of mets..people get recurrence of the cancer..you know that surgery is not without complications..
rt with multiple mets seems to be no guarantee of increased overall survival..
how about systemic approach with adt and abiraterone?
Greetings to the floating Titanic.... surrounded by ice bergs. Would you be kind enough to tell us your age? location? treatment center? doctors(s) names(s) and specialties? If you don't wish to tell us.... your name will be stricken from the assigned lifeboat list... BTW your info helps us help you...
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/21/2019 1:52 PM EST
Told you we were on a hell ship, man... Didn't know it was the Titanic... Where are those life boats again??
Fish
Ask your Oncologist if it would help in your fight against this crummy disease. I had it done at the first round of PC. I'm now in my third bout with it with a Gleason score of 9 and I am sorry I did.
My experience with the radical prostatectomy left me with a shorter penis and incontinence. Every time I have to use a urinal instead of sitting on a toilet I end up wetting my pants.
I'm sorry if I'm too graphic but that's life as I know it. Take a good look at it before you leap I wish you well on your journey
I know this may be a nuisance but when you have to urinate bring along a plastic "McKesson Male Urinal 32 oz. 1000 ml with Cover Single Patient Use CAS" with you into the toilet cubicle. Urinate in that and empty into toilet. Wash it and no more wetting your trousers.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 02/21/2019 4:41 PM EST
Thanks j-o-h-n. I see how this would be an option
my partner has a Gleeson score of 8. He is 56. Advice form all the oncologists (including one of the world experts in this area), urologists and radiologists is to have a RP - he is having this on the 5th March - robotic surgery. One of the reasons is that if he had radiotherapy and the PSA score keeps going up, he will not be able to have RP without some major complications and very few surgeon would do this. We are in Australia. Hope this helps. Good luck - my partner thought long and hard about this but has decided to have a RP to give himself the best chance possible - he is very fit. Research only reports what the funders want you to know....
Does he had an advanced prostate cancer with the Mets in the bones
Great question, Startanew. Surgery is ruled out for those with advanced prostate cancer and mets which have spread outside the prostate.
no, but he does have advanced cancer with mets in the lymph nodes surrounding the prostate as per a PET scan. Having said this PET scans only sow up mets 3mm or bigger so who knows. They are treating it as if he does have mets elsewhere just to be careful! Hence why RP, hormone treatment, radio and chemo (if the results after the RP come back that he will need this).
I agree with this approach although the trick may be in finding a surgeon (and insurance?) to get on board. The SOC (standard of care) is to give up on RP once the pesky canoes are out and about.
I was G10 with several bone and lymph node mets. Lupron for 1.5 yrs, 6 rounds of chemo (taxotere) followed by robotic RP in a clinical trial. I got my urinary function back under control in a matter of months and have had undetectable PSA for over a year since surgery. It's early yet, but so far, I'm happy I shot down the mother ship. Time will tell whether there will be any long-term advantage, but as for now, scans looking good.
Everyone is different...
Not only is everyone different, but in most cases our surgeons are also different
I figured out you're still on Lupron.That's such a burning question, isn't it? I've been pondering myself. Most of oncologists I've met said there is not data that RP benefits people like us: high Gleason, advanced, but few mets. Most of them think RT may have benefits according to a few studies.
Hi Startanew. I was diagnosed with at least two confirmed mets in femur and pelvis in February, 2017. I was also in a whole lot of pain as primary tumor was fairly substantial and likely pressing against nerves. Of course the left seminal vesicle had also been invaded. I also had a gleason score as an 8. I saw two surgeons, one at Stanford and one at UCSF. neither would operate at that point. I went on ADT and responded very well. In January of 2018, I had a radical prostatectomy. The surgeon was fantastic. He was pretty agressive, and no nerve sparing for me. He truly cleaned me out and removed, in his mind 99% of the cancer. Very fortunately for me, the urinary incontinence (while sleeping) lasted a few weeks, and I have been normal ever since. I think, and this is slightly intangible, I felt better immediately, more energy, not feeling cold as much, just stronger. Maybe it has to do with my body not having to fight that large primary tumor. My uneducated feeling is that now, with that I am doing, I am better equipped to fight what is left. My activity level is the best it has been in years, I am riding a bike again, and while still on ADT, my PSA is .006. I can't say if this is the right decision for anyone, but for me, it was very obvious, and I am so grateful to my surgeon as my life has been back ever since. I have never second guessed my decision. Best of luck!
My doctor removed my prostate, along with 36 lymph nodes (of which only 1 turned out to be "dirty" more than 6 years ago, despite the fact that I had metastatic PC. I had a Gleason score of 9 and a PSA in the mid-40s. He was a leader in the PC field and he was basically the first doc in the field of PC to remove the prostate for someone with mets. He was and still is at MSKCC in NYC.
I was his 13th patient to undergo the surgery and he was only doing it on young/healthy patients. 2 other leading docs I consulted with thought he was out of his mind. My understanding is that prostate surgery for patients with mets has become more popular since. I can't advise you on whether this is the course you should follow, but I do believe you should look into it and discuss with your docs.
I am now 7 ears post diagnosis and still responding(cross my fingers) to Lupron. I can't say whether the the surgery was helpful or not, but I was young (54 yrs) and healthy, and willing to take the risks associated with the surgery. I didn't think there was TOO much downside risk and I wanted to be as aggressive as possible.
It was a difficult surgery ( and I have had many in my life, including knee replacement ). Mine was NOT robotic, and I am not sure they could've removed the lymph nodes if it had been robotic. I am glad I had it done. Had I not had the surgery and my PC progressed, I would've always wondered if the surgery might have helped. Now, I don't have to worry about that.
Good luck with your decision and your treatment.
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