This new study apparently shows that aggressive targeted treatment for men with ogliometastatic disease will extend lives substantially. This seems counter intuitive in that if the horse is out of the barn, what good would it do to kill a few tumors when it seems likely many micro tumors would still be out there. My MO Dr Scholz and the radiologists at UCLA had theorized this and advised me to do it since there is little down size. Perhaps now others should consider this treatment in addition to their sytemic treatment of course. interestingly they now intend to try it with as many as ten mets....
Schwah
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Schwah
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Good stuff Schwah. Terminal cancer is tumor cells breaking off and landing creating new tumors and the new tumor cells break off and land and rinse wash repeat. The millions if not billions of cancer cells that are destroyed will gain a man time also eliminating cells that become castrate resistant. Depending on the individuals response to the modality of treatments administered it can also potentially cure. Seeing the medical field finally getting away from the decades old "barn door" theory when cancer is in an oligometastatic state is the hope a lot of men need. The tides are finally changing.
(1) This was a very small study. (n=99, randomized 2:1))
(2) you have to acknowledge that "oligometastatic cancer" may not be a thing. Every cancer is different. The natural history of, say, lung or pancreatic cancer, is very different from prostate cancer.
(3) There were only 16 men with prostate cancer
(4) With follow-up of only 5 years, there were probably no deaths due to prostate cancer in the treatment or the control group. So conclusions probably do not apply to prostate cancer.
(5) As for down side: 3 (5%) of men who received SBRT died directly from injuries from it. 30% suffered Grade 2 or worse side effects. This is a very high injury rate for uncertain benefit.
The only trial that will address mortality in prostate cancer patients is the CORE RCT in the UK. I wrote to the author and he said he had no further data on PC. He advised drawing no conclusions until the findings of the CORE RCT from the UK are released in 2021.I hope it shows that such treatment increases survival by 13 months in men with oligometastatic PC, but it is important that we do not pressure ROs to deliver radiation when it may be unsafe to do so.
As usual you spoil the party with darn facts lol. I was under the impression that Radiation to mets in bones (3 to 4 doses) was pretty harmless and that most of the bad side affects would be when the radiation was going to organs and other soft tissue. Is my assumption wrong ?
Nothing is spoiled and look at it as a positive. Remember we all have opinions and it's okay to form your own. This type of aggressive treatment is gaining ground and if there wasn't some substance to it the heavy hitting research facilities wouldn't be offering it. Research centers have a data base of thousands and believe me, if they weren't seeing any positive results they wouldn't be publishing peer reviewed papers on it.
That doesn't mean a guy shouldn't try what cutting edge research centers are recommending. Maybe there are no published reports or proven clinical trials but there are plenty of men that benefitted from localized aggressive treatment. There is a reason they are all getting on board with it. I know it worked for me.
How could you possibly know that they "benefitted from localized aggressive therapy" or that "it worked for me"? None of us has a crystal ball that shows an alternative reality if one hadn't had that treatment. That's why it's imperative that randomized clinical trials be done. I have said repeatedly, that I think it's OK to do it if it is safe. The problem is that desperate patients and their ROs are doing it even when it's not safe. Killing patients who easily have 15 or more years of life expectancy is not "cutting edge," it is unethical. So far, there is no evidence of survival benefit - so is it really worth one's life?
TA, I understand your thought on a safe treatment protocol. I believe most professionals in their field know the boundaries and won't offer anything that will cause more harm to the patient. I wouldn't expect anyone to do a treatment that is not safe. I actually had a radiation oncologist tell me to stay away from radiation treatments unless absolutely necessary. With any big treatment decision there is a risk involved. It is up to that individual to weigh out their own risk vs reward opinion trusting the doctor they are working with. Not all doctors are monsters and will put you in a bad situation. I have to believe there are far more good than bad. With a Stage IV diagnosis there is no time to wait for 10 year clinical trials. Major hospitals are now saying early aggressive treatment is showing a survival benefit or even cure with oligometastatic disease. They aren't just pulling this information from the air. There are no guarantees it will work however there is a chance that it will. Without doing anything it's HT for life. We are not all older men and some of us have another 30 years to go. Is it worth the risk?? Absolutely with a doctor that has your back.
In one of my live PC Support Groups, a man with oligometastatic PC asked a very well respected RO in L.A. to use SBRT on is abdominal mets and ribs near his heart. The RO refused. The man found an RO in private practice who would do it. The man said he felt debilitated afterwards (heart/lung injury? possibly). For a month, his PSA went down as one would expect. By 3 months, his PSA was higher and he had new mets detected. The "aggressive" treatment he shopped for bought him nothing and possibly hastened his demise.
If there is better information, don't you think doctors would love to share it in a peer-reviewed journal? No such info exists in any of the published literature. And what does exist is not very impressive. "Aggressive" without "safe and effective" is useless and damaging.
I knew a man that had a 286 PSA, aggressive Gleason 9 Stage IV prostate cancer and was given 3 - 5 years to live with bulky disease showing in pelvic and abdominal nodes. He heard all the doctors tell him nothing could be done other than HT because it was outside of the prostate. He chose not to lay down and listen and found a surgeon that believed otherwise and performed a radical retropubic prostatectomy, bilateral extended pelvic lymph node dissection, and retroperitoneal lymph node dissection hoping to add 10 years to the man's life. The man ended up with no major complications, <0.01 PSA and now coming off HT.
That man would be me and I would not be there unless I took the chance. There is not a doctor that knows my story that will say I would've got there without Karnes aggressive approach. I wouldn't change a thing.
You have no way of knowing what would have happened. The most recent arm of STAMPEDE trial AND in and another large clinical trial called HORRAD showed no benefit to debulking the prostate with radiation in men with lots of mets. Perhaps surgery works when radiation doesn't (I doubt it), and perhaps ePLND or whole pelvic radiation improves results (I don't doubt it if it is only in LNs). The point is, one has no way of knowing without a randomized clinical trial. I'm glad you FEEL it helped you, but RP+ePLND carries a high risk of side effects, and that is a LOT to go through if there was no survival benefit. That is what they are trying to determine now at MD Anderson.
"I have know way of knowing what would have happened" Well I'm pretty sure I know I was there and what it took me to get out of it. Of course hormone therapy can affect the mind, maybe I should've just stayed on it. Then again I'm pretty sure that only works for awhile. I wonder if all those men in every clinical trial failed miserably and none of them achieved what the hopeful outcome was. We all have to land somewhere and it's not always at the bottom. Without trying a guy will never know.
You and I had the exact same path with high Gleason and radical prostatectomy, me with bilateral seminal vesicle involvement along with nerve bundles and abdominal lymph involvement. Not to forget bone nets on my spine and ribs.
My oncologist at Mayo recommended cryoablasion to 4-5 spots on my spine and ribs and Xtandi. It worked. I have been zero PSA since with nothing lighting up on the C-11 Choline PET scan for a year and a half now.
Isn’t the sabr trial early results a pretty good indicator that it does extend lives. I know it’s small and early and not a lot of subjects but still , it sure is somewhere north of just “hope” although perhaps still south of “proven”.
Only if you believe that oligometastatic cancer is the same no matter what kind of cancer it is. I know that the metastatic behavior of, say, lung cancer, is different from prostate cancer. I've learned not to take lessons from other cancers.
Bah Humbug. Lol. Points all well taken TA. All of us will have to make our own decisions based upon the limited data out there. In making those tough decisions it always helpful to have other logical opinions such as yours. Sometimes it does make sense though to use logic to step out of the box as long as those doing so are aware of the risks. By way of example, my wife’s aggressive stage 2 HER2 positive breast cancer had a great potential to return. Her MO (Dr. Link who does nothing but breast cancer) saw how well stage 4 women at ucla were responding to Herceptin, then an experimental new drug. It wasn’t curing them but for a time it was shrinking their tumors. He knew many of the dr wives at ucla with similar circumstances to my wife were trying the herceptin. He gave my wife the opportunity to try it because he knew how many HER2 women were relapsing. Fast forward 17 years and she’s fine and since phase 3 clinical studies have shown Herceptin to reduce recurrence by some 60%. There was even a Harry conick Jr movie made about the drug bring such a huge advance. Dr. Scholz was combining early Zytega with lupron long before the studies proved it extended life some 40%. Of course there are risks to some of these unproven approaches but they are not exactly Laetrile in Tijuana. They are being proposed by responsible doctors at top notch facilities because they are seeing great results and not coming from charletons. We all have terminal cancer so many of us are willing to take calculated risks. The key is having people like yourself helping us to understand those risks. For that I thank you. Keep up the great work.
When one is told there is a good chance you’re going to die by X number of years, there are a number of paths one can invariably take - as seen by the countless numbers of different approaches in life, and on this board.
Some go hunting for the witches brew, some ask are you sure this is the right thing to do, some are convinced they can McGyver their way out of anything, and some wait for someone else’s blessing before diving into the deep end of the pool. Everyone has their own process.
In my own life, I started a business over a decade ago with less than five thousand dollars to my name and was told there was no way I would succeed. I am retired in my 40s, having literally made it to the top of my own profession on a national scale. I heard “no” so many times, that’s impossible so frequently, but my own deep sense of self and intuition kept me motivated. On one level i considered the opinions of others, but as I grew more successful, I realized the sort of magic formula to the success of my newly minted peers wasn’t necessarily talent, or luck, it was this insane and remarkable drive, tenacity and determination.
When I was diagnosed I read the book Radical Remission. It was a game changer for me. I found many parallels to the success I found professionally, and saw among others. The author made the point that of all the amazing stories of survivors out there, the one common thread among them was a common sense of zealous tenacity and determination - yes, some driven people don’t make it, but of the ones that do, very few sat around and accepted the status quo. That was their common thread.
I am inspired on this board by Schwah and others because I see that survivors spirit in them. I can tell you that Nalakrats will probably live to 100 and outlive all his doctors. I encourage everyone to read the book Love Medicine and Miracles by Dr. Siegel. There is a great anecdote about a large cohort of dx’d men who were told that they would likely lose their hair after taking a certain medication. A ridiculously large percentage of them did lose their hair - funny thing was, they were given placebo. It was a surreptitiously designed psych test on the power of one’s own mind to create outcomes.
I know that among us are many different archetypes- some of your posts make me feel like it’s raining indoors, while some others inspire me to get up and go do exercise even when zonked out from this adt, and some make me believe I can beat this thing.
I was diagnosed as oligometastatic earlier this year and I started my journey at a regional centre. I sat across from an onc who kept using the term “evidence based” as a shield whenever he was challenged to think outside the box. And as I quickly boned up on oncology I didn’t see in this person and their team any sense of confidence, I didn’t see inspiration, I saw burn out and rote replies, probably dished our daily whenever challenged by a new patient. But to be fair, the best intentions.
As I researched my disease I saw many defeatist spirits in articles 4 or 5 years ago talking about how unproven SBRT is, how it’s a “scam”, doubting Thomas pounding his drum till the end. Now SBRT is the prom queen of oncology, and rightly so.
I’ve signed up for an aggressive multimodal protocol following conversations with the leaders in this field. Few of these approaches have made phase 3 multi institutional studies, but to be honest, I really don’t care. I’ve sat across from these people and I saw genius in them, I saw inspiration, and whether I live to see my kid graduate college or not, I’m making the choice to believe I can beat this, and the power I derive from my own sense of agency I know will help me on this healing journey. I listened to Gene Kwon talk about how when he was writing papers with Nobel prize winner Jim Allison, everyone laughed at them, their work was not evidence based, and they were wasting their time. And I asked the top guys doing the most aggressive stuff to share their theories, and their data, and to explain to me why their pitch makes sense. And many of them did.
When you look at advanced cancer in most cases there is a meaty bell curve that drives the data and the research money. Sadly the bottom 10% really don’t make it very far, and they’re rarely talked about. Likewise, the top 10% make it very far- they are remarkable outliers, and they too are not very talked about. But they’re there, thousands of them, thousands and thousands of stage 4 survivors who beat the odds. And in talking to doctors and asking them, persistently, what defines a long term survivor, the same themes kept emerging- tenacity, a sense of agency, and a real belief in whatever it is the patients were doing - be it prayer, conventional western medicine, TCm, Ayurvedic medicine, chanting, or juicing.
I write this screed not to criticize those among us who are the persistent statistical sober second thought, but to encourage my brothers who come on here with that fighting spirit, sharing stories of hope and great outcomes, regardless of the size of the cohort. I see you. You inspire me. Thank you.
If this thing kills me, so be it. But for me, believing in what I’m doing, trusting my intuition, and swinging for the fences even when the odds are stacked against me, will give me a much greater sense of agency on this journey, and dignity. And that’s more important than anything evidence based.
Very good read my friend. There is a quote I recently read I think you will appreciate, I know I did...."I know of no higher fortitude than stubborness in the face of overwhelming odds" - Louis Nizer
does anyone have an opinion between a urologist and oncologist who knows the most and more effective treatment? from what i have dealt with i put the oncologist as maintenance men.
from your many comments on this site either u have had cancer for a very long time or done alot of treatments consider your many views. how old are u and how long have u had prostrate cancer?
Two days ago we had a follow up with my husbands MO at Seattle Cancer Care Alliance. At the appointment was told we should consider radiation as my husbands dx is possibly Oligometastatic with a questionable met on his tailbone, was told recent studies show this treatment is very effective.
Also on the way there we heard a news story on the radio about ‘studies’ indicate the positive impact of an organic vegetation diet for people dx with breast, colon, or prostate cancer.
Radiation, especially with the intensity of SBRT, is never harmless - although some risks can be managed. Especially worrisome is anything in the abdomen and upper thorax or near parts of the digestive tract. Even low doses of radiation targeted at certain ribs may be toxic to the heart or lungs, for example. In the SABR-COMET trial, the 3 radiation-caused deaths were caused by radiation pneumonitis, pulmonary abscess, and subdural hemorrhage after surgery to repair a SABR-related perforated gastric ulcer.
TA, In a previous post by Patrick I argued that in a younger man dealing with this disease radiation should be a last resort saved only if needed due to the toxicity. You implied it was not as harmful as surgery and I was using outdated information. You even made a point the Radiation Oncologist I talked to was not up to date on information which is actually quite amusing considering who she is. So now your making radiation sound almost like a last resort. Which is it??
WHERE the radiation is given and HOW it is given are important. Radiation to the prostate is a very different thing from radiation, say, near the heart. Look at the published data rather than what you think is true or possibly misheard in conversations. I'm sure that if you sent Dr Kuban any of those articles, she would agree. There's only one version of the facts.
when they found my new merts they called it a leason on a rib.radiation doc told me they wouldn't hit because the rib wasn't a wt bearing bone where as my previous friend had it spread to her shoulder and they immediately treated it with radiation any answers to this issue?
Good information regarding possible mets to ribs ... and thinking radiation will sap them ... but might cause worrisome radiation damage to the internal organs: more organ function problems, related pain, scaring, ulcerations, etc. I can’t get the image out of my mind of being fried on the inside from radiation, creating more problems, etc. and hell on the road to death. (Tall Allen ... always important reflections and information!)
I’m about to have sbrt to two bone mets : in left rib and right scapula. It worked on a met to femur in 2017 and hopefully will work again this time. I totally believe it’s given me more years.
Great debate men. That’s what makes this such a fabulous site. Numerous opinions and a wide variety of thought. I would never spend time on a site that merely echoed one another. If only our political debate in this country could be so respectful.
Great discussion, gentlemen! Very spirited and thought provoking. There are no absolutes that apply to all of us without exception.
My own experience...I am Stage 4,, hormone sensitive, 3 1/2 years since initial Stage 4 Dx, oligometastatic with one tumor on the R. Inferior pubic ramus confirmed by biopsy of the tumor. It showed up in 2015 as a glowing hot spot on my PET scan. About 2 years ago I asked my oncologist, Dr. Winston Tan, at the Mayo Clinic in Jax about “zapping” my one tumor. He wanted me to wait, and (one of the great things about the Mayo) while I was sitting in his office he made a same day appointment for me to discuss the issue with Dr. Katherine Tzou, a radiation oncologist at the Jax Mayo. She looked at my previous scans, and said that given the location of the tumor SBRT was “do-able,” without very low risk of serious collateral damage, but like Dr. Tan, she wanted me to give it some more time. Both of them said that sometimes these tumors resolve without the need for SBRT. They set me up for a follow-up PET scan in either 3 or 6 months (can’t recall which and too lazy to look it up). Sure enough, the hot spot had become a mere vague shadow on the scan, no longer the glowing bright “star” that was shown on earlier scans. The report referred to it as “interval resolution.” On a follow up scan done in July, 2018 it was still gone. I have had no bone pain whatsoever.
The point is, be careful and thoughtful about jumping onto the SBRT wagon. You may want to save it for later, and your tumor(s) may be in an area likely to cause serious collateral damage. That is a personal decision that only you can make with the guidance of your medical oncologist, and possibly concurrence of a radiation oncologist.
I’m not advocating any course of action for any of you, just relating my own personal experience.
I’m not sure how common it is, but it must occur often enough for both my MO and the RO to have noted it. I wouldn’t do anything either way until discussing it with your MO. I think part of it for me was re-scanning it 3-6 months after my discussion with them. You can’t just let it go. If the tumor is gone by that time, more power to you. If it still shows up as a hot spot you might want to discuss with your MO the possibility of doing SBRT. Best wishes to you! Mark
It may sound logically inconsistent, but everyone is right here. Allen makes a valid point about needing a well structured level 1 evidence before broadly prescribing the aggressive oligo treatment. And the others make a convincing argument that stage 4 patients who can tolerate the side effects can not wait 5years or more for the level 1 evidence, given all the other evidence.
As it stands right now, it is a personal decision based on all available information, for and against. I did an RP in April and feeling very well with no sign of incontinence. No glowing spots to zap. It may not improve my OS at the end, but why not if you can tolerate the side effects?
My situation is I'm Stage 4, have oligometastatic prostate cancer with mets to T3 and T4. At diagnosis my oncologist, radiation oncologist as well as my urologist did not recommend treatment to the prostate. I'm on the Zytiga/Lupron train since Dec 2017. PSA has been stable for 10 months at .7 The study completed by the Stampede trial has revived my interest as well as with my EBRT oncologist. He is ready to do it. I figure what is there to loose other then deal with the side effects of radiation to the prostate. Why wait until I become castrate resistant and start a new volley of drugs? . The ADT treatment has reduced the size of the prostate as well as shrunk T3,T4 and I think the time is right to do the prostate but I'm going to wait on the SBRT treatment to the bone. T3 is lit up and the SBRT radiation oncologist said it is likely that I will get a compression fracture after the high dose radiation. My QOL is great , watch my diet and work out 3 days a week at the gym. Anyone have thoughts?
Holy Moly.... for a second I thought your ID was ctflatliner... Whew!!! Well my experience is that I had 39 sessions of radiation of the prostate bed after a RPD and it was a breeze. Problem is years later I had collateral damage to my left urinary tract. So beware of what is being zapped.
OK, after reading all these posts, I will now weigh in.
I am have oligometastatic PC. Been through RP, 40 days of radiation, chemo and I am on ADT. Today I worked with my RO for over 1 hour, the same RO who treated me 6 years ago. We have 2 lymph nodes and one met on a vertebrae to hit, per recent PET with Axumin. Recommended by my urologic oncologist, with a statement in writing that there's no evidence prospectively that there's any benefit. My RO agreed to do this. Risk is low since these mets are outside the area irradiated 6 years ago.
Tall_Allen is correct: there are no prospective data to suggest that irradiating these areas will extend life or improve QOL. Clinical trials are underway at MSK and other locations. I cannot afford to wait five years for the results of these trials. Since the radiation is expected to do no harm, I say "full speed ahead."
I will keep my profile updated. Perhaps for many, many years.
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