There has been a lot of controversy in the medical community about the value of performing a radical prostatectomy on a man who already has metastatic disease. Most surgeons wouldn't do it in the past but a number of studies reported that it helped.
Here's an abstract of a new study on the other side that reports that de-bulking does NOT help in the hoped for way:
This seems typical of a lot of the issues in cancer treatment. There's is evidence on both sides of an issue. You can find a specialist who will argue for one side, another who will argue for the other side, and a third who will say, "I don't know, what would you like to do?"
And of course the same is true for patients. You can find plenty of patients who will argue vociferously for or against many treatments.
It all gives me more appreciation of the guys who said, "Make your choice, but whatever you do, don't beat yourself up if it didn't work out. There is no way to know whether a different choice would have worked better and no way to go back and change your mind. Just look to the future and move on."
Alan
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AlanMeyer
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When I was diagnosed my biggest frustration was a doctor telling me "once outside of barn door there are limited options." If a doctor tells you that and you have oligometastatic or locally advanced disease, leave and find a doctor that will work with you on treating as curative.
There are men that have knocked this disease down with lymph and bone mets. You will never know unless you try. Even if not curative it is going to add years to your life. Millions of cancer cells will be eliminated. Those may be the first cells to become castrate resistant. Any major hospital that have doctors who specialize in prostate cancer will look at this possibility. The newest research is showing it offers a survival benefit and they wouldn't offer it unless they had proof to back it up.
The above article states only bone mets. I think many doctors that do not stay current on what is going on in the prostate cancer field have a misconception themselves as to how metastatic disease is treated. A previous post mentions new life expectancy data and there is no way based on current treatments the data can be correct. The guys on this site have proven that with their own data. Out with the old and in with the new, not only with life expectancy but treatment as well.
We are all individuals and what works for some will not work for others. We will be inspired by what we read on how some have came through this, we will be disheartened and saddened by others. The bottom line is if not taking a chance on a form of localized treatment you may miss out on the break you needed. There is no quality of life unless you are living.
Frustration doesn't even nearly come close to the anger, downright hatred, I have for my first Uro, and the second opinion, I got. I got the same bullshit line from the two of them, "Sorry, Mr. Kaminski, but surgery is out of the question. It would be like closing the barn doors after the horses got out". Seven years later, I finally got a hold of my biopsy report. It says, "?Adjacent lymph node questionable".
Both told me my lymph "nodes" were involved. The report specifically states, "Possible perinueral invasion in one core". Not a word about that.
Now, I'm not a god damn Urologist, by a long shot. But one thing I DO know how to do, is read. At every turn, these guys just threw shit at me, without ever reading reports from imaging I had, and literally treating me for incontinence, when my urethra was cut off by my prostate. I was SO continent, when they drained my bladder, they got two and a half liters. DO NOT GO TO DELAWARE VALLEY UROLOGY.
I wouldn't rule anything out yet. The Mayo Clinic in MN might be an option for you to look into. It all starts with a phone call and contact the Urology Department not Oncology. It may take a few months to get in so it will leave you with plenty of time for planning. They will answer your questions over the phone about insurance or whatever.
I almost gave up after the second Urologist. He basically told me I was wasting his time being there. I drove over 4 hours and the first words out of his mouth were "why are you even here?" He left me sitting with an in-turn who explained my only choice of treatment would be HT. I left there feeling like a dead man walking, next to my initial diagnosis it was the worst experience I've had in a doctors office.
I agree on Mayo MN being the place. Horst Zincke a Urologist at mayo has a paper on better survival going through with RP after cancerous lymph nodes were found, rather than not doing RP ,at least 20 years ago, before that if they found LN disease during RP, they just closed you back up, and I suppose many still do.
I find it funny how they all use the Barn door analogy, that’s exactly what the Urologist that dxed me said. It must be the title of that chapter at Urology school.
“The swords of battle are numerous , None more powerful than Humor” SJG.
Many years ago while working as a workshop manager in a large dealership, I was trying to passify a very pissed off Dr whose car had been misdiagnosed by a mechanic under my supervision. I apologized for the mistake. He said "You people are professionals, you shouldn't make mistakes"
I then said " Sir I'm sure you make mistakes, but you bury yours"!
I remember when I was first diagnosed with a very, very high PSA and 20+ mets to bones and 15-ish mets to lymph nodes, and an asymptomatic prostate that looked normal on scans. During the first year in particular, I wanted so badly for something like debulking to be potentially really life-extending, even if it may not have been curative over the long haul. Similarly, I yearned for some magic biopsy of something that might be targeted. After a while, I eventually came to think about the Quality of Life impossibility of "debulking" large parts of my spinal bones, and hips, and sacrum, too ... even if I did have my untouched prostate or any of the mets treated surgically or radiated, etc. I also faced the question of "OK, which of these many areas should we biopsy first, and when we get the results, what should we do about it?" And I considered the millions or billions of cancer cells that still could be left behind, regardless of any of those actions. Slowly, I came to a kind of personal acceptance of it, and turned more of my attention to other systemic things that I could do, and put my treatment Options energies there.
I have been lucky when it comes to the biology of my cancer, and I have survived 4 years, so far, pain free, and without major, major symptoms.
The potential erectile dysfunctional aspects of a prostate treatment might have been a toss-up, compared to the libido/shrinkage/other effects of Lupron. But there is no way I would have wanted urinary incontinence to have impacted each and every day of my life during these past 4 years that I have been able to survive, so far, and into the indefinite future.
(Still, I am aware that in the world of Ovarian cancer "debulking" of the primary source and other areas happens all the time. Debulking also happens in brain cancers. And debulking happens in lung cancers, too, particularly if it affects basic functions like breathing.)
My cancer had spread to the lymph nodes. I had to argue with my surgeon (one of the best in the world in Da Vinci surgery) initially said I was not a candidate for surgery. His argument was that the advantages of surgery do not outweigh the negatives. I disagree.
I was able to convince him with open literature articles showing an advantage with surgery if the cancer spread to the lymph nodes (but not to the bones or distant organs). One of his residents also helped me convinced him. Had surgery in April 2016 where they also removed 14 lymph nodes, one of them 100% cancer. The pathology report was what confirmed that I had Ductal cancer and not intraductal cancer. With that pathology report they decided to be more aggressive treating my cancer.
One of the hard problems in the question of whether or not to de-bulk is, Should I do it? Will it help? But even if we decide to try it, the next question that arises is, Did it actually help?
We might get the surgery and see the PSA go down, but not know whether the decrease is due to a systemic benefit, or just to the benefit of removing a mass of tumor cells in the prostate. If instead the PSA goes up, we don't know whether it went up because the treatment didn't help or if it did help but only slowed the rate of growth of the cancer. If the PSA declined immediately after the surgery and then continued to decline for months afterwards, we might have pretty good evidence that the treatment helped. But I don't know if that ever happens.
I'm not advocating any position on this. I don't know if de-bulking helps in general, if it helps in particular situations, or if it doesn't help. All I think I can say is that the evidence is still unclear. As with many other procedures we just don't know whether it helps or not.
What if early chemo managed to take care of any circulating tumor cells and cells the surgery might not have otherwise gotten. What if the only cancer left happened to be on lymph nodes that were removed in surgery or only on the prostate itself. The new era of early chemo adds to the dynamic of this question. I am 100 percent convinced I would not have a report stating no evidence of disease without the surgery that my doctor offered.
I don't know about the 100% certainty, but your argument seems reasonable to me. It sounds like your doctors were attempting to cure you, not just de-bulk your tumor load.
Actually the intent of my surgery was to de-bulk the disease and give me a possible 10 more years of life. My scans showed what they termed as "bulky" disease in my lymph nodes. My doctors told me exactly that and made no mention of curative however that is the ultimate goal doctor and patient are hoping for. My point is I don't think anyone on this site or elsewhere have gained a durable remission unless multiple treatments are used. I may be wrong but have not come across it yet. Whether radiation or surgery it seems a localized treatment is needed.
Sorry to jump in so late, Alan. I think de-bulking would be an option for guys to have if they need to have a TURP done. I had a EuroLift done as opposed to a TURP. But, if I had to do it again, de-bulking might be a good idea.
The survival benefit of de-bulking is unclear and may never be proven or disproven. There is one unquestionable benefit and that is recurrence in the prostate region with chronic effects on urination, retention, bladder obstruction, kidney failure are far less likely once the prostate is gone. This "local recurrence" is uncommon in surgically treated patients but far more common in patients without local treatment.
It's a German/Danish study & I don't know how that affected "best systemic therapy". In fact, there are a number of German papers on the subject. Very little U.S. interest, it seems, with none of the latest eleven 2017 papers being from the U.S.
"The inclusion criteria for both cohorts were identical." Not quite, since the men were not randomly assigned. Why would a man opt for avoidable surgery? A belief that aggressive therapy was essential? PCa in the family or some other factor not included in the criteria?
"Compared to recent reports, the outcomes for our control group are more favorable, indicating a potential selection bias in the previous retrospective studies." Yes, of course, the others must be biased. LOL
"So far, no significant difference in ... overall survival"
"So far"? With "median follow-up 32.7 mo", I wonder how many of the 43 cytoreductive radical prostatectomy men are actually still alive? Wouldn't "best systemic therapy" have kept most alive beyond 3 years?
Morbidity issues aside, 35% of the men who did not have surgery had "locoregional complications", versus 7%. What would be the standard treatment?
Good stuff Dan, that study is 2001 and I think a future study will be interesting with the new era of early chemo. In my case a year of ADT and 6 treatments of docetaxel pretty much wiped out the cancerous nodes before the surgery. All doctors thought my nodes were loaded and I ended up being only 1 positive. It makes me wonder how many men actually have positive scans when its scar tissue and are denied treatment.
When I was dx I was staged pt1c Gleason 9 low volume so I opted for RP as I was told that RP or RT we’re equally viable given my age (69) and good health. After RP I was stage pt3b a poor prognosis. Since then I’ve had RT to prostate bed, pelvic lymph nodes and right femur over four years. Psa is now .16. I believe that Debulking before I was metastatic may have reduced the severity of my Mets. At any rate I could be in worse condition given some of the stories I’ve read about here and elsewhere.
Triumphant story! I’ve saved it to Google Keep for inspiration. We’re glad you have a skilled surgical nurse wife. Btw, Les’s youngest sister administered the endoscopy department at Methodist H. In Mpls. She even designed the layout of the new unit. We took a tour which included a viewing of the non-sterile instruments of torture. No way am I going there. But her husband is a 10 year survivor of an encapsulated tumor behind his nose who has endoscopy at both ends regularly because his urologist says there is a relationship between the two. So far so good for them. He visits Mayo at both ends of the country, too, as they spend winters in AZ but primarily he goes to Rochester. Stay well for all of us, Nalakrats—and nurse. Mrs. S
P.S. Now you’ve got us, which is to say me, thinking about adding CLA, and I need a new prescription so he can take at least two Metformin. Never giving up.
P.P.S. I hear you saying, “Scaredy Cat.” Guilty as charged. On with the Swiss Chard lying on a tarp on the kitchen floor. I’m counting on Les’s greens and BioResponse.
Well,back in 2002 I was diagnosed with Gleason 8 and Psa of 34. I had an excellent surgeon and had a radical done. One seminal vesicle was involved. After that went on intermitent Lupron and it lasted 12 years before reoccuring. Then had radiation therapy to the prostate bed3 years ago. Currently on continuous Lupron and have a 0.01 Psa. So needless to say debulking was worthwhile to me. 15 years and counting. 😎
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